VOLUME 3

AGENDA FOR RESEARCH

ON WOMEN’S HEALTH

FOR THE 21ST CENTURY

A Report of the Task Force on the

NIH Women’s Health Research Agenda 

for the 21st Century

PUBLIC TESTIMONY

Bethesda, Maryland

November 1997

NATIONAL INSTITUTES 

OF HEALTH

Office of the Director

AGENDA FOR RESEARCH

ON WOMEN’S HEALTH

FOR THE 21ST CENTURY

A Report of the Task Force on the

NIH Women’s Health Research Agenda 

for the 21st Century

NATIONAL INSTITUTES 

OF HEALTH

Office of the Director

Office of Research 

on Women’s Health

VOLUME 3

PUBLIC TESTIMONY

Bethesda, Maryland

November 1997
U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health. 

Agenda for Research on Women’s Health for the 21st Century. A Report of the Task Force on the NIH

Women’s Health Research Agenda for the 21st Century, Volume 3. Public Testimony. Bethesda, MD. 

NIH Publication No. 99-4387, 1999. 
I

n September 1991, the Office of Research on Women’s Health (ORWH) of the National Institutes of Health

convened a meeting in Hunt Valley, Maryland, to assess the state of the science and to develop an agenda 

to guide women’s health research in the coming decade. The report generated by that meeting, Report of the

National Institutes of Health: Opportunities for Research on Women’s Health, set forth the research recommendations

developed by working groups focused on the major divisions of a woman’s life span and on scientific issues, 

diseases, and conditions that affect women’s health. That report has served as the broad blueprint for women’s 

health research at the National Institutes of Health.

Now, several years later, science has continued to expand the parameters of knowledge, generating additional

questions and pursuits. New public health issues and challenges emerging in the field of women’s health have

demonstrated a need to re-examine and update the national agenda for women’s health research. To advance this

concept, ORWH began a process to identify continuing or emerging gaps in knowledge and to provide researchbased strategies that will result in improved health status for all women. This process included holding a series 

of public hearings and scientific workshops sponsored by ORWH. 

The first regional conference was hosted by the University of Pennsylvania School of Medicine and Allegheny

University of the Health Sciences in Philadelphia in September 1996. It focused on sex and gender issues and 

their impact on research in women’s health; gaps in knowledge about women’s health; and successful models 

for the recruitment, retention, re-entry, and advancement of women in biomedical careers. The second regional

meeting — hosted by the Tulane University Medical Center, Xavier University of Louisiana, and Meharry Medical

College — was held in New Orleans in June 1997. The New Orleans meeting focused on sex and gender perspectives for women’s health. The third in the series was held in Santa Fe, New Mexico, in July 1997, and was hosted

by the University of New Mexico School of Medicine and the University of Iowa College of Pharmacy. The Santa Fe

meeting focused on differences among populations of women, factors that contribute to differences in their health

status and health outcomes, and career issues for special populations of women. The final national meeting, convened in Bethesda, Maryland, in November 1997, and subtitled, “Putting It All Together, The Agenda for Research 

on Women’s Health for the 21st Century,” reviewed the deliberations and recommendations from the three regional

public hearings and scientific workshops, and developed the recommendations and priorities for updating the

women’s health research agenda. All the meetings included an opportunity for public testimony as well as 

formal scientific sessions.

The contents of this volume represent the full text of the public testimony presented at the Bethesda national

meeting. The public testimony was delivered by individuals representing themselves or organizations interested in

biomedical and behavioral research on women’s health. They included practitioners interested in women’s health;

representatives from the scientific, professional, and women’s health organizations; and women’s health advocates.

They have all participated in the process of revising and updating the agenda for women’s health research at NIH,

and many continue to provide guidance and expertise to ORWH.

Additional volumes in this series consist of scientific workshop reports, presentations by distinguished 

scientists, and public testimony presented at the regional meetings in Philadelphia, Pennsylvania; New Orleans,

Louisiana; Santa Fe, New Mexico; and Bethesda, Maryland.

iii

VOLUME 3

PREFACE
The views expressed in this volume are solely those of the individuals testifying at the public hearing and 

do not necessarily reflect the positions or judgments of the National Institutes of Health, the U.S. Department 

of Health and Human Services, or the Administration.
C O NTENTS

Preface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .iii

Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .vii

Introduction to the Public Testimony . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1

Vivian W. Pinn, M.D.

Public Testimony . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5

Workshop Agenda and Participant Roster . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .189

INDEX . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .219

vii

VOLUME 3

The Office of Research on Women’s Health wishes to acknowledge the many people who served 

on committees and working groups and who contributed their collective expertise to the creation 

of the Agenda for Research on Women’s Health for the 21st Century. ORWH wishes to thank:

• Ruth L. Kirschstein, M.D., Deputy Director, National Institutes of Health

• Task Force on the NIH Women’s Health Research Agenda for the 21st Century

• Advisory Committee on Research on Women’s Health

• Coordinating Committee on Research on Women’s Health

• Working Group Cochairs of the Meetings of Beyond Hunt Valley: 

Research on Women’s Health for the 21st Century

Philadelphia, Pennsylvania

New Orleans, Louisiana

Santa Fe, New Mexico

Bethesda, Maryland

• More than 1,500 men and women who participated in the Public Hearings 

and Scientific Workshops. 

ACKNOWLEDGMENTS

ix

VOLUME 3

COCHAIRS

Donna Dean, Ph.D.

Senior Advisor to the Deputy Director

National Institutes of Health

Bethesda, Maryland

Marianne Legato, M.D.

Professor of Clinical Medicine 

Columbia University College of Physicians 

and Surgeons

New York, New York

TASK FORCE MEMBERS

Karen Antman, M.D.

Professor of Medicine and Pharmacology

Columbia University

Chief, Division of Medical Oncology

Columbia Presbyterian Comprehensive Cancer Center

New York, New York

Mary J. Berg, Pharm.D.

Professor

Division of Clinical and Administrative Pharmacy

University of Iowa

Iowa City, Iowa

Stephanie Bird, Ph.D.

Special Assistant to the Provost

Massachusetts Institute of Technology

Cambridge, Massachusetts

Edward Brandt, M.D., Ph.D.

Regents Professor and Director

University of Oklahoma, Center for Health Policy

University of Oklahoma Health Science Center

Oklahoma City, Oklahoma

George Bryan, M.D.

Dean Emeritus, School of Medicine

University of Texas Medical Branch

Galveston, Texas

Leah Dickstein, M.D.

Professor and Associate Chair

Department of Psychiatry 

University of Louisville School of Medicine

Louisville, Kentucky

Mary Dufour, M.D., M.P.H.

Deputy Director

National Institute on Alcohol Abuse and Alcoholism

National Institutes of Health

Bethesda, Maryland

Carola Eisenberg, M.D.

Lecturer in Psychiatry 

Dean, Student Affairs (Retired)

Harvard Medical School

Boston, Massachusetts

John Estrada, M.D.

Assistant Professor of Pediatrics

Meharry Medical College

Nashville, Tennessee

Bonita Falkner, M.D.

Professor of Medicine and Pediatrics

Institute for Women’s Health

Allegheny University of Health Sciences

Philadelphia, Pennsylvania

Sheryle Gallant, Ph.D.

Associate Professor of Psychology

Department of Psychology

University of Kansas

Lawrence, Kansas

John Greene, D.M.D., M.P.H.

Professor and Dean Emeritus

School of Dentistry

University of California at San Francisco

San Francisco, California

Jeane Ann Grisso, M.D., M.Sc.

Associate Professor of Medicine

University of Pennsylvania School of Medicine

Philadelphia, Pennsylvania

Hazel Harper, D.D.S.

President, National Dental Association

Washington, District of Columbia

TASK FORCE ON THE NIH WOMEN’S HEALTH RESEARCH

AGENDA FOR THE 21ST CENTURY

OFFICE OF RESEARCH ON WOMEN’S HEALTH, NATIONAL INSTITUTES OF HEALTH
x

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Joseph Hurd Jr., M.D.

Chairman, Department of Gynecology

Lahey Hitchcock Clinic Medical Center

Burlington, Massachusetts

M. Margaret Kemeny, M.D., F.A.C.S.

Chief of Surgical Oncology

North Shore University Hospital

Manhasset, New York

Judith LaRosa, Ph.D., R.N., F.A.A.N.

Professor and Chair

Department of Community Health Sciences

Tulane University Medical Center

School of Public Health and Tropical Medicine

New Orleans, Louisiana

Angela Barron McBride, Ph.D., R.N., F.A.A.N.

Distinguished Professor and Dean

Indiana University School of Nursing

Indianapolis, Indiana

Sherry Mills, M.D., M.P.H.

Prevention and Control Extramural Branch 

National Cancer Institute

National Institutes of Health

Bethesda, Maryland

Donnica Moore, M.D.

Associate Director

Sandoz Pharmaceuticals Medical Education Center

Sapphire Women’s Health Group

Neshamic Station, New Jersey

Judy Norsigian

Co-Director

Boston Women’s Health Book Collective

Boston, Massachusetts

Jane Pearson, Ph.D.

National Institute of Mental Health

National Institutes of Health

Bethesda, Maryland

David Robinson, Ph.D.

Program Director

National Heart, Lung, and Blood Institute

National Institutes of Health

Bethesda, Maryland

Helen Rodriguez-Trias, M.D.

Co-Director, Pacific Institute for Women’s Health

Western Consortium for Public Health

Los Angeles, California

Rosalie Sagraves, Pharm.D.

Dean, College of Pharmacy

University of Illinois at Chicago

Chicago, Illinois

Gloria Sarto, M.D., Ph.D.

Professor 

University of New Mexico School of Medicine

Albuquerque, New Mexico

Anne Sassaman, Ph.D.

Director, Division of Extramural Research and Training

National Institute of Environmental Health Sciences

National Institutes of Health

Research Triangle Park, North Carolina

Ora Lee Strickland, Ph.D.

Independence Professor

Nell Hodgson Woodruff School of Nursing

Emory University

Atlanta, Georgia

Ramona Tascoe, M.D., M.H.S.A.

Chair, Council on the Concerns of Women Physicians

Kaiser/National Medical Association

Oakland, California

Constance Weinstein, Ph.D.

National Heart, Lung, and Blood Institute (Retired)

National Institutes of Health

Bethesda, Maryland

Darlene Yee, Ed, C.H.E.S.

Professor and Director, Gerontology

College of Health and Human Services

San Francisco State University

San Francisco, California

Members-at-Large

Coordinating Committee on Research on Women’s 

Health Members

Advisory Committee on Research on Women’s

Health Members
xi

VOLUME 3

Roster, June 1997

CHAIRPERSON

Vivian W. Pinn, M.D.

Associate Director for Research on Women’s Health

Director, Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

EXECUTIVE SECRETARY

Joyce Rudick

Acting Deputy Director

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

COMMITTEE MEMBERS

Dyanne D. Affonso, Ph.D., F.A.A.N.

Dean and Professor

Nell Hodgson Woodruff School of Nursing

Emory University

Atlanta, Georgia

Kathy S. Albain, M.D.

Associate Professor of Medicine

Division of Hematology and Oncology

Loyola University Medical Center

Maywood, Illinois 

Carol A. Aschenbrener, M.D.

Senior Vice President

Kaludis Consulting Group

Washington, District of Columbia

Byllye Y. Avery, M.Ed.

Founder

National Black Women’s Health Project

Provincetown, Massachusetts

Mary J. Berg, Pharm.D.

Professor

Division of Clinical and Administrative Pharmacy

College of Pharmacy

University of Iowa

Iowa City, Iowa 

Edward N. Brandt, Jr., M.D., Ph.D.

Professor and Director

Center for Health Policy Research

University of Oklahoma Health Science Center

Oklahoma City, Oklahoma

David M. Brown, M.D.

Professor of Pediatrics, Laboratory Medicine, 

and Pathology 

Head, Division of Pediatric Endocrinology

School of Medicine

Division of Pediatric Endocrinology

University of Minnesota

Minneapolis, Minnesota 

Linda Burhansstipanov, M.S.P.H., Dr.P.H.

Executive Director

Native American Cancer Center

AMC

Pine, Colorado 

John J. Estrada, M.D.

Assistant Professor of Pediatrics

Department of Pediatrics

Meharry Medical College

Nashville, Tennessee 

W. Lou Glasse, M.S.W.

President Emerita

Older Women’s League

Vassar College

Poughkeepsie, New York

Irma E. Goertzen

President and Chief Executive Officer

Magee-Women’s Hospital

Pittsburgh, Pennsylvania 

ADVISORY COMMITTEE ON RESEARCH ON WOMEN’S HEALTH

NATIONAL INSTITUTES OF HEALTH 
xii

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Joseph K. Hurd, M.D.

Chairman

Department of Gynecology

Lahey Clinic Medical Center

Burlington, Massachusetts 

Barbara A. Koenig, Ph.D.

Senior Research Scholar

Executive Director

Stanford University Center for Biomedical Ethics

Palo Alto, California

Marianne J. Legato, M.D., F.A.C.P.

Department of Medicine

Columbia University

New York, New York 

Angela Barron McBride, Ph.D., R.N., F.A.A.N.

Distinguished Professor and Dean

Indiana University School of Nursing

Indianapolis, Indiana

Linda C. Niessen, D.M.D., M.P.H.

Professor and Chair

Department of Public Health Sciences 

Baylor College of Dentistry

Dallas, Texas

Amelie G. Ramirez, Dr.P.H.

Associate Professor

Associate Director, Center for Cancer Control Research

Baylor College of Medicine

Houston, Texas

Nancy Sabin Wexler, Ph.D.

Higgins Professor of Neuropsychology

College of Physicians and Surgeons 

of Columbia University

New York, New York
xiii

VOLUME 3

COORDINATING COMMITTEE ON RESEARCH ON WOMEN’S HEALTH

NATIONAL INSTITUTES OF HEALTH

Roster, 1997

Norman Anderson, Ph.D.

Director

Office of Behavioral and Social Sciences Research 

Tina Blakeslee

Legislative Liaison and Analysis Branch

Office of the Director

Kristina Borror

Scientist

Office of Science Policy

Joy Boyer

Program Analyst

National Center for Human Genome Research

Stephanie Bursenos

Assistant Director for Program Coordination

John E. Fogarty International Center 

Virginia Cain, Ph.D.

Special Assistant to the Director

Office of Behavioral and Social Sciences Research 

Jill Carrington, Ph.D.

Scientific Research Administrator

National Center for Research Resources 

Joan Chamberlin

Information Officer

Division of Computer Research and Technology

Paul Coates, Ph.D. 

Deputy Director

Division of Nutrition Research Coordination

National Institute of Diabetes and Digestive 

and Kidney Diseases

Lois Ann Colaianni, Ph.D.

Associate Director, Library Operations

National Library of Medicine

Alison E. Cole, Ph.D. 

Program Administrator

PBC Program

National Institute of General Medical Sciences 

Donna Dean, Ph.D.

Chief

Biological and Physiological Systems

Division of Research Grants

Amy Donahue, Ph.D.

Acting Chief

Hearing and Balance/Vestibular Sciences Branch

National Institute on Deafness and Other 

Communication Disorders

Deborah Dozier-Hall

Assistant to Chief for Education

Warren Grant Magnuson Clinical Center

Mary Dufour, M.D., M.P.H.

Deputy Director

National Institute on Alcohol Abuse and Alcoholism 

Robert Eisinger, Ph.D.

Senior Program Analyst

Office of AIDS Research

Shirley Everest

Acting Federal Women’s Program Manager

Office of Equal Opportunity 

Loretta Finnegan, M.D.

Director

Women’s Health Initiative

Julia Freeman, Ph.D.

Director

Centers Program

National Institute of Arthritis and Musculoskeletal 

and Skin Diseases
xiv

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Harriet Gordon

Medical Officer

National Center for Research Resources

Robin Hamilton

Program Analyst

National Institute of Neurological Disorders and Stroke 

Eleanor Hanna, Ph.D.

Special Expert

Division of Biometry and Epidemiology

National Institute on Alcohol Abuse and Alcoholism 

J. Taylor Harden, Ph.D. 

Assistant to the Director for Special Populations

National Institute on Aging

Barbara Harrison 

Special Projects Officer

Scientific Program and Policy Analysis

National Institute of Diabetes and Digestive 

and Kidney Diseases

Jan Hedetniemi

Director

Office of Community Liaison

Office of the Director 

Caroline Holloway

Health Scientist Administrator

Biomedical Technology

National Center for Research Resources 

Sharon Hrynkow, Ph.D.

Office of International Science Policy and Analysis

John E. Fogarty International Center

Carole Hudgings, Ph.D., F.A.A.N.

Program Officer

Office of Management Policy

Chyren Hunter, Ph.D.

Health Scientist Administrator

Division of Human Communication 

National Institute on Deafness and Other

Communication Disorders

Laura James

Nurse Scientist Administrator

National Institute of Nursing Research

Walter Jones

Deputy Director of Management and Operations

Warren Grant Magnuson Clinical Center

Bonnie Kalberer

Special Assistant/OSP

Office of the Director

Barbara Kellner

Technical Information Specialist

National Institute on Aging

Dushanka Kleinman, D.D.S.

Deputy Director

National Institute of Dental Research

Natalie Kurinij

Health Scientist Administrator

National Eye Institute

Anna Levy

Program Analyst

National Cancer Institute

Ellen S. Liberman, Ph.D.

Director

Lens, Cataract, and Glaucoma Programs 

National Eye Institute

Barbara Liu

Director

Office of Science and Technology

National Heart, Lung, and Blood Institute 

Angela Magliozzi

Women’s Health Program Coordinator

National Institute of Allergy and Infectious Diseases 

Bernadette Marriott, Ph.D.

Director, Office of Dietary Supplements

Office of the Director

Dorothy McKelvin

Contract Specialist /OEO

Office of the Director

Sheila Newton

Director

Office of Program Planning and Evaluation

National Institute of Environmental Health Sciences 
xv

VOLUME 3

Cherie Nichols

Chief, Planning and Evaluation Branch

National Cancer Institute

Delores Parron, Ph.D.

Associate Director for Special Populations

National Institute of Mental Health

Estella Parrott, M.D. 

Coordinator of Research Programs

National Institute of Allergy and Infectious Diseases 

Sherman Ragland, Ph.D.

Deputy Associate Director for Special Populations

National Institute of Mental Health

Mary Ann Robinson

Senior Scientist

National Institute of Allergy and Infectious Diseases 

Adele Roman, M.S.N.

Deputy Women’s Health Coordinator

National Institute on Drug Abuse 

Angela Ruffin, Ph.D.

Outreach Librarian

National Library of Medicine

John Ruffin, Ph.D.

Director, Office of Research on Minority Health

Office of the Director

Anne Sassaman, Ph.D.

Director, Division of Extramural Research and Training

National Institute of Environmental Health Sciences 

Belinda Seto, Ph.D.

Office of Extramural Research

Office of the Director

Louis Sibal, Ph.D.

Director, Office of Laboratory Research

Office of the Director 

Sandra Smith-Gil

Senior Scientist 

National Cancer Institute

Susan Stark

Writer-Editor

Planning Office

National Institute of Arthritis and Musculoskeletal 

and Skin Diseases

Mary Stephens-Frazier

Health Scientist Administrator

National Institute for Nursing Research

Patricia Straat, Ph.D.

Deputy Chief for Referral

Center for Scientific Review

Anne Thomas

Director

Office of Communications

Office of the Director 

Elizabeth Thomson

Assistant Director

Clinical Genetics Branch

National Human Genome Research Institute 

Patricia Turner

Program Analyst 

National Institute of Neurological Disorders 

and Stroke 

Donna Vogel, M.D., Ph.D.

Medical Officer, Reproductive Sciences

National Institute of Child Health and 

Human Development 

Carol E. Vreim, Ph.D.

Deputy Director, Division of Lung Diseases

National Heart, Lung, and Blood Institute

CoraLee Wetherington, Ph.D.

Women’s Health Coordinator 

National Institute on Drug Abuse

Judith Whalen

Associate Director for Science Policy, Analysis, 

and Communication

National Institute of Child Health and 

Human Development 

Susan Wise

Program Analyst

Planning and Legislation Section

National Institute of Dental Research

Chris Zimmerman

Program Analyst 

National Institute of General Medical Sciences

1

VOLUME 3

INTRODUCTION

T O THE PUBLIC

TESTIMONY

Vivian W. Pinn, M.D.

Associate Director for Research on Women’s Health

Director, Office of Research on Women’s Health

National Institutes of Health

BEYOND HUNT VALLEY:

RESEARCH ON WOMEN’S

HEALTH FOR THE 

2 1 S T CENTURY

This Public Hearing, sponsored by the Office 

of Research on Women’s Health (ORWH), was held 

in conjunction with a series of landmark scientific

workshops designed to provide recommendations 

for the National Institutes of Health (NIH) agenda 

for research on women’s health for the 21st century.

ORWH was established within the Office of the

Director of NIH in September 1990, by Dr. William

Raub, then Acting Director of NIH. The Office was

charged with the important role of providing a central

focus for NIH-supported biomedical and behavioral

research related to women’s health issues, and with

“...assuring that research conducted and supported 

by NIH appropriately addresses issues regarding

women’s health and that there is appropriate participation of women in clinical trials.”

The major mission of ORWH is:

• To strengthen, develop, and increase research 

into diseases, disorders, and conditions that 

affect women, determining gaps in knowledge

about such conditions and diseases, and then

establish a national research agenda for NIH for

future directions in women’s health research; 

• To ensure that women are appropriately 

represented in biomedical and biobehavioral

research studies, especially clinical trials, that 

are supported by NIH; and,

• To direct initiatives to increase the numbers 

of women who are participants in biomedical

research careers. 

ORWH does not function in isolation. We look 

to the broader community of scientists, health care

providers, and women’s health advocates across the

United States, and beyond, to ensure that the research

we foster and support and our priorities for research

reflect the needs and concerns of the women’s health

community. We rely upon members of the women’s

health community to provide direction for us in

addressing their needs and concerns through research

and in pursuing the scientific knowledge that may 

permit the medical community to diagnose, treat, 

and prevent the adverse health conditions and 

diseases that affect women across the life span. One 

of the most effective ways for us to accomplish this 

is through public hearings.

From the time of the establishment of ORWH 

and the structuring of our first NIH research agenda 

on women’s health, we have utilized public hearings 

to receive testimony from public representatives, and 

to build upon that testimony through scientific meetings and workshops to construct priorities for women’s

health research. The report of our first undertaking,

National Institutes of Health: Opportunities for Research 

on Women’s Health, is based upon public testimony 

and a scientific meeting held in Hunt Valley, 

Maryland in 1991.

Recognizing that there has been progress in

addressing women’s health through research, but 

also recognizing that the extensive focus on women’s

health has brought forward new concepts and scientific

questions upon which we need to focus, we began this

process to reevaluate the foundation for our research

agenda and to reformulate priorities as we go forward

into the next century. Therefore, we began a process 

of revisiting our original agenda, based on the report,

National Institutes of Health: Opportunities for Research 
2

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

on Women’s Health, often referred to as the “Hunt 

Valley Report,” through a series of public hearings 

and scientific meetings, of which this is the final, 

and which we have called “Beyond Hunt Valley:

Research on Women’s Health for the 21st Century.”

We began by establishing a Task Force on the 

NIH Women’s Health Research Agenda for the 21st

Century to assist and guide us, and our Congressionally mandated Advisory Committee on Research 

on Women’s Health, through this process.

At our first regional meeting, held in Philadelphia 

in September 1996, we began the process of reexamining our research agenda to ensure that it is relevant 

as we move towards the next century. We held the 

first Public Hearing at that time. During the New

Orleans Public Hearing and Scientific Workshop, 

in June 1997, we invited discussion on aspects 

of the research agenda based upon sex and gender

issues, e.g., physiological, psychosocial, and pharmacologic differences between women and men. The 

third regional meeting, held in Santa Fe, was designed 

to focus on factors that contribute to differences in

health status and health outcomes among different

populations of women, and career issues for special

populations of women in science.

Finally, during the national meeting in Bethesda,

we held our concluding public hearing of this series

and brought together the results of all three regional

meetings in this workshop. During the Bethesda Public

Hearing, we specifically requested testimony addressing:

• State of knowledge and continuing or emerging

gaps in knowledge about women’s health across 

the life span;

• Sex/gender differences in health and disease;

• Factors that influence differences in health status

and health outcomes between different populations

of women;

• New priorities for research on women’s health; and

• Career issues for women scientists: overcoming 

barriers and achieving success in biomedical careers.

NIH is the primary agency within the Department of Health and Human Services that performs,

promotes, and supports biomedical and behavioral

research. Therefore, the focus of the public hearings

was on research that should be initiated, expanded, 

or enhanced to add to our existing knowledge about

women’s health, as well as to consider innovative 

programmatic and collaborative efforts appropriate 

for NIH, to promote career opportunities for research

on women’s health, and especially that of women in

biomedical careers.

The testimony from all the meetings was received

and reviewed by our Task Force on the NIH Women’s

Health Research Agenda for the 21st Century. The

resulting information was used to guide the Task Force

in developing recommendations for the NIH research

agenda for the beginning of the 21st century. We are

fortunate to have members of the NIH scientific community, as well as women’s health advocates, scientists,

and health professionals from across the country 

serving as members of this important Task Force.

On behalf of NIH, and specifically ORWH, 

we thank all the participants who presented public 

testimony for your role in reassessing our research

agenda so that we can continue to make progress in

women’s health status as we enter the next century. 

We are very appreciative of your efforts to share your

wisdom and concerns during our consideration of

issues of importance for the NIH research agenda 

on women’s health for the 21st century.
Marjorie J. Albohm, M.S., A.T.C.

National Athletic Trainers Association

Amy Allina

Reproductive Health Technologies Project

Linda Burnes Bolton, Dr.P.H., R.N., F.A.A.N.

National Black Nurses Association

Lori A. Boyajian, D.O.

University of Health Sciences

College of Osteopathic Medicine

Joel O. Brende, M.D. 

Mercer University School of Medicine

Evelyn J. Bromet, Ph.D.

Sjögren’s Syndrome Foundation, Inc.

Sandra Brooks, M.D.

Society of Gynecologic Oncologists

Ross C. Brownson, Ph.D. 

Prevention Research Center

Saint Louis University School of Public Health

Alan P. Brownstein

American Liver Foundation

Jacquelyn C. Campbell, Ph.D., R.N., F.A.A.N.

The Johns Hopkins University School of Nursing

Molly S. Chatterjee, M.D.

Meharry Medical College

Bente E. Cooney, M.S.W.

National Osteoporosis Foundation

Zara Cooper, B.S.

Self

Brenda Crabbs

Arthritis Foundation

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Frances Cuomo, M.D.

American Shoulder and Elbow Surgeons

Leilani Doty, Ph.D.

Community Partners and 

University of Florida Health Science Center

Carolyn M. Dresler, M.D.

American College of Chest Physicians

Laura Flawn, M.D.

Scoliosis Research Society

Janet Heald Forlini, J.D.

The Center to Improve Care of the Dying

Julie Fleming Graham, M.Ed.

Self

Phyllis Greenberger, M.S.W.

Society for the Advancement of Women’s 

Health Research

Letha Y. Griffin, M.D.

American Orthopaedic Society for Sports Medicine

Andrew A. Guccione, Ph.D., P.T.

American Physical Therapy Association

Betty B. Hambleton

Health Resources and Services Administration

Jo A. Hannafin, M.D., Ph.D.

Orthopaedic Research Society

Betty Lee Hawks, M.A.

Office of Minority Health

U.S. Department of Health and Human Services

Susan Hendrix, D.O.

Wayne State University

Mary Hepburn, B.S.

Self

PUBLIC TESTIMONY

BETHESDA, MARYLAND 

NOVEMBER 17, 1997
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A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Nicolette Horbach, M.D.

American Urogynecologic Society

Mary Lloyd Ireland, M.D.

Ruth Jackson Orthopaedic Society

Anne Kasper, Ph.D.

Boston Women’s Health Collective

Marlene Keeling

Chemically Associated Neurological Disorders

Gwendolyn Puryear Keita, Ph.D.

American Psychological Association

Ann Kolker

Ovarian Cancer National Alliance

Virginia T. Ladd, R.T.

American Autoimmune Related Diseases Association

Mary Lamielle

National Center for Environmental Health Strategies

Marian C. Limacher, M.D.

American College of Cardiology

Lisa Lindahl

Epilepsy Foundation of America

Randall McCoy

CareTrends Health Education and Research Institute

Nancy K. Mello, Ph.D.

McLean Hospital

Virginia Miller, Ph.D.

Mayo Foundation

Ann Mulligan

DES Cancer Network

Mary Lynn Newport, M.D.

American Society for Surgery of the Hand

Gloria Nichols, Ph.D.

Catherine A. White, Ph.D.

The University of Georgia

Nancy J. Norton, B.S.

International Foundation for Functional 

Gastrointestinal Disorders

Nancy L. Parsley, D.P.M.

American Podiatric Medical Association

Kenneth A. Perkins, Ph.D.

Self

Jann Primus, Ph.D.

Spelman College

Bette A. Rank

Thomas M. Bruckman

American Foundation for Urologic Disease

Vicki Ratner, M.D.

Interstitial Cystitis Association

Sally A. Rudicel, M.D.

American Orthopaedic Foot and Ankle Society

Rosalie Sagraves, Pharm.D., F.C.C.P.

American Pharmaceutical Association

Charlotte (Barney) Sanborne, Ph.D.

Texas Women’s University

Barbara Seaman

National Women’s Health Network

Diane K. Seay

National Association for the Advancement 

of Women in Science

Wesley Segawa

Emory University School of Nursing

Amanda Sherman

DES Action USA

Eleanor G. Shore, M.D., M.P.H.

Harvard Medical School

Amanda Spitler

American College of Rheumatology

Donna E. Stewart, M.D., D.Psych.

Toronto Hospital

Deborah Studen-Pavlovich, D.M.D.

American Association of Dental Schools

Laura Lowe Tosi, M.D.

American Academy of Orthopaedic Surgeons

Charlene Waldman

Paget Foundation

Joanne A.P. Wilson, M.D., F.A.C.P.

American Gastroenterological Association

Ruth York, R.N., Ph.D., F.A.A.N.

Association of Women’s Health

Obstetric and Neonatal Nurses
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Marjorie J. Albohm, M.S., A.T.C. National Athletic Trainers Association

I am privileged to present this testimony today on behalf of the National Athletic Trainers Association (NATA).

The NATA, founded in 1950, is an allied health care professional association recognized by the American Medical

Association. It is made up of over 23,000 members worldwide.1 The certified athletic trainer is the recognized professional member of this Association. The mission of NATA, and goal of the certified athletic trainer, is to provide

health and injury care to physically active people of all ages through the prevention, treatment, and rehabilitation of

acute and chronic activity-related injury and illness. Certified athletic trainers have a long history of demonstrating

their effectiveness in providing health and injury care to elite college and professional sports athletes. They have

applied these same effective skills to physically active people of all ages and, as verified by current national outcomes data, have achieved the same impressive results.2 Simply put, certified athletic trainers are the recognized

experts in effectively preventing and managing health and injury concerns of physically active people.

Historically, NATA has clearly demonstrated its commitment and attentiveness to the specific needs and concerns of the female population. Since the early 1970s, female certified athletic trainers have played a significant role

in the development of NATA and the profession of athletic training, and have provided health and injury care for

physically active females of all ages. Currently, over 50 percent of the membership of NATA is female. Women are

represented on all major NATA committees, chair several of these committees, and are represented on the Board 

of Directors. The Executive Director is female, as well as is the current President of the NATA Research and Education Foundation. The NATA Research and Education Foundation has awarded over $500,000 in grants to fund

research addressing issues affecting physically active people and has specifically awarded grants to female scientists

serving as principle investigators pursuing research issues of critical importance to physically active females such as

anterior cruciate ligament injuries and eating disorders.3 It is with a deep personal and professional commitment

for the issues before us that I represent NATA in addressing my comments to you today.

Physical Activity Participation Rates

Physically active females have been emerging as a dramatically expanding population over recent years. The

influence of gender-equity legislation in the form of Title IX, and its subsequent enactment, rapidly expanded

opportunities for girls and women in organized athletic experiences, demonstrated by a dramatic increase in 

numbers of participants.4–6 The varied, multiple benefits of this participation in interscholastic and intercollegiate sports has been well documented.7–9 In 1990, 91 percent of women surveyed by the Women’s Sports 

Foundation believed that it was important for girls to participate in organized sports while growing up.10

Women’s participation in physical activity in general has increased dramatically. Current data indicate that

women are more likely than men to be frequent participants in physical activity, and a greater percentage of 

women participate on a more frequent basis than men.5 Physically active women have indicated that they are 

willing to make the effort to be active because of the physical and mental benefits realized.11 Research has shown

that those realized benefits valued the most are cardiovascular fitness, improved muscle tone, weight maintenance,
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and improved self image.12 Evidence suggests that these benefits are realized throughout the life span. The recognition of the benefits of exercise, and the motivation to continue the pattern of physical activity initiated earlier in

life, has prompted a large number of women to remain, as well as become, physically active in their 40s and 50s.13

More women over the age of 60 are physically active and a recent research study indicated that they were less

stressed and happier than those who were of younger age.11 Their physical activity was cited as a major reason 

for believing they were in better health than their peers.14

Benefits of Physical Activity

The positive effects of physical exercise in relation to the prevention and management of cardiovascular disease 

(a leading cause of death in women), osteoporosis, weight control, mental health, increased longevity, and an

enhanced quality of life for women of all ages has been, and will continue with greater frequency to be well, documented.15,16 Research has shown that similar patterns of physiologic and muscular adaptation to exercise occur

between males and females, resulting in the realization of similar benefit.17 The positive effects of physical activity,

long emphasized and recognized by the male population, can certainly now be applied to the female population.

Physical activity throughout the life span not only demonstrates positive physical and mental outcomes 

and an improved quality of life but, in addition, potentially has the ability to reduce health care dollar expenditures by decreasing the need for consumer utilization of health care services. Improving the health status of our

population, through physical activity, could very well demonstrate significant economic benefits.

Injury Risks

Physical activity does, however, by its inherent nature, expose participants to potential injury risks. Predominately musculoskeletal in nature, these injuries may be both acute and chronic, resulting from direct 

traumatic mechanisms and/or repetitive motion activities. The pre-eminent musculoskeletal scientists and 

practitioners testifying here today are internationally recognized for their research documenting and addressing these multi-dimensional, complex injury-related issues.18–27 Certified athletic trainers have also made 

significant contributions to this body of knowledge, both as independent researchers and in collaboration 

with these distinguished scientists.28–32

Injury Documentation

Musculoskeletal concerns are indeed priority issues for physically active females. Documenting these concerns is of paramount importance in maximizing the positive effects of physical activity, increasing participation 

and compliance to these activities by women throughout their life span, and in controlling health care dollar 

expenditures directed at injury care and management among this population. Injury can be a limiting factor to

exercise compliance. Many females, because of their limited exposure to movement experiences, are uneducated 

in relation to injury and when injury occurs, even when minor in nature, quickly become exercise “drop-outs.”

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This negative experience may cause these individuals to never return to their pre-injury level of physical activity

and serve to discourage them from pursuing physically active lifestyles. Information relating to injury/illness patterns, prevention, and management is essential to encouraging females to become physically active and to continue

their commitment to a physically active lifestyle throughout their life span.

In order to effectively address the health care needs of physically active women, it is essential that data be

obtained that scientifically and objectively documents musculoskeletal injuries that predominate in this population; and what obstacles these injuries may present to the physical activity patterns and aspirations of females. 

Only when injury and illness incidence is specifically identified and documented can effective programs of prevention and treatment be developed and initiated.

Today, no national system exists which can provide comprehensive information about injury and illness 

patterns in physically active women. Large injury surveillance databases associated with interscholastic, intercollegiate, and professional sports have been in existence for many years.34–36 Historically, these databases have

focused on male athletes participating predominantly in contact/collision sports.34 Female athletes have recently

and selectively been included in some injury surveillance databases but data collected have been limited to specific

sports focusing on gender comparisons for selected injuries.35 Data is virtually unobtainable on those injury and 

illness patterns among physically active females who are outside the scope of organized sports participation. 

This omission continues to become more evident as the numbers of physically active females, in all age groups, 

continues to rapidly expand.

Injury among the general population has been designated as the principle public health problem in America

today.37 Injuries have been identified as the leading cause of death and disability in children and young adults, 

and have been identified as the most significant cause of lost years of productive life for Americans.38 A prerequisite for the scientific study of injury is the acquisition of data on which to base priorities and further research.

Epidemiological research methodology must be developed and applied to the injury and illness considerations of physically active females to identify problems, define their extent, and determine appropriate, effective 

preventative and management interventions.

Injuries have definable and correctable causes. Preventative strategies can be developed and implemented 

when it is known who is at risk, what types of injuries are sustained, their severity, when, where, and under what

circumstances injuries occur. By comparing information over time, changing patterns of injury can be observed 

and strategies for intervention can be implemented. High quality epidemiologic data are essential for the planning,

development, and evaluation of efforts to prevent injuries. Ensuring the safest environment, which serves to attract

and encourage females to pursue and maintain a physically active lifestyle, must be our priority and our goal.
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A National Injury/Illness Surveillance System

Achieving this goal requires the creation and establishment of a national injury surveillance system for monitoring injuries and illness occurring among physically active women of all ages, determining causes, and short- and

long-term consequences. The establishment of this nationwide injury surveillance system would not only benefit

the specific population being studied, but would allow for the inclusion of injuries not currently being followed 

in any system and would, therefore, make a significant contribution to the body of knowledge concerning injuries

among our population in general.

Continuous, systematic data collection is essential for developing, implementing, and evaluating preventative

interventions. Once injury and illness patterns are documented, objective analysis of these occurrences can occur.

Specific screening protocols, designed to identify injury predisposition factors, can then be developed and implemented and serve as effective prevention strategies. The absence of a nationwide surveillance system and resulting

lack of appropriate data has, at times, necessitated the use of corrective surgical interventions for injury management resulting in significant health care dollar expenditures to manage these injuries and the subsequent chronic

conditions which may result.

The proposed injury surveillance system must be developed and organized to address the specific population being evaluated. Data to be collected must be specifically identified and standardized. Data collection 

instruments must be developed according to psychometrically proven principles, ensuring validity and reliability. 

Data collection methodology must be developed and specific methods for accessing representative populations

must be determined. National and regional centralized data repositories need to be established and detailed 

systems of data retrieval and analyses must be outlined. Summaries of significant findings must be disseminated 

to the scientific community and to the general public on a regular basis. When specific trends are identified, 

a panel of scientific experts must be identified and consulted to determine methods of further study leading 

to the development of preventative interventions.

An effective nationwide injury surveillance system, designed to track the injury and illness patterns of 

physically active females, must be established now. Study groups need to be immediately identified to initiate 

the planning and development process for this much needed system, to ensure its timely enactment. Monies 

must be directed toward recognizing and establishing this priority immediately.

As health care reform continues to challenge the health care delivery system to be more effective and more 

economically efficient, it appears that the establishment of a system to effectively document and track injuries 

and illnesses occurring among a significant portion of our population would logically lead to effective interventions resulting in cost savings.

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Conclusion

Realizing the documented benefits of physical activity, the current numbers of female participants, the 

anticipated projected increase in participation in physical activity in this population in the coming years, and 

the evidenced benefits of physical activity throughout the life span of women, it is our professional and moral 

obligation as responsive health care practitioners, researchers, scientists, and American citizens to establish a 

surveillance system which accurately documents activity related injury and illness patterns among females. 

A physically active lifestyle must be encouraged in the safest environment possible, identifying risks and developing and emphasizing appropriate prevention and management interventions. It is irresponsible to deny the 

importance of this issue and to ignore this problem — a problem that affects physically active females of all 

ages and one on which an investment in research could yield an unprecedented dramatic return.

References

1 The National Athletic Trainers Association, 2952 Stemmons Freeway, Dallas, TX 75247.

2 Athletic Training Outcomes Assessment. BIO*Analysis Systems, Frisco, CO, 1997.

3 The National Athletic Trainers Association Research and Education Foundation, 2952 Stemmons Freeway, Dallas, TX 75247.

4 Project on the Status and Education of Women. What constitutes equality for women in sport? Washington, D.C.: Association 

for American Colleges, September 1975.

5 National Federation News. October 1989.

6 NGSA News. August 1990.

7 Colton and Gore: Risk, Resiliency, and Resistance: Current Research on Adolescent Girls. Ms. Foundation, 1991.

8 National Osteoporosis Foundation: Fact Sheet, 1993.

9 Chalip, L, Villige, J, and Duignan, P. “Sex-role identity in a select sample of women field hockey players,” International 

Journal of Sport Psychology 11 (1980): 240–48.

10 Sabo, D and Snyder, M. Miller Lite Report: Sports and Fitness in the Lives of Working Women. Milwaukee, Miller Brewing, 1993.

11 Lutter, JM. “History of women in sports — Societal Issues.” Clin Sports Med 13(2) (April 1994): 263–78.

12 Melpomene Institute: Bodywise Woman. New York: Prentice Hall Press, 1990.

13 Levin, S. “Champion athletes over 50,” Ms. (March/April 1992): 71–75.

14 Lutter, JM. “A question of age: Similarities and differences of Melpomene members across the lifespan,” Melpomene Journal

11 (1992): 28–34.

15 Yeager, KK and Macera, CA. “Physical activity and health profiles of United States women,” Clin Sports Med 13(2) 

(1994): 329–35.

16 Snow-Harter, CM. “Bone Health and Prevention of Osteoporosis in Active and Athletic Women,” Clin Sports Med 13(2)

(1994): 389–404.

17 Shangold, M, and Mirkin, G. Women and Exercise, Physiology and Sports Medicine. F.A. Davis Company: Philadelphia, 

PA, 1988.

18 Clarke, KS and Buckley, WE. “Women’s injuries in collegiate sports,” Am J Sports Med 8 (1980): 187–91.
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19 DeHaven, KE and Linter, DM. “Athletic injuries: comparison by age, sport, and gender,” Am J Sports Med 14 (1986):

218–24.

20 Garrick, JG and Requa, RK. “Girls’ sports injuries in high school athletics,” JAMA 239 (1978): 2245–48.

21 Hunter, LY, Andrews, JR, Clancy, WG, and Funk, JF. “Common orthopaedic problems of female athletes,” in A.A.O.S. 

Instructional Course Lectures 31 (1982): 126–51.

22 Ireland, ML. “Special concerns of the female athlete,” in: FH Fu and DA Stone (eds.). Sports injuries: mechanism, prevention,

and treatment, 2nd ed. Baltimore, MD: Williams and Wilkins, in press.

23 Ireland, ML and Wall, C. “Epidemiology and comparison of knee injuries in elite male and female United States basketball

athletes,” Med Sci Sports 14 (1982): 4/90.

24 Kowal, DM. “Nature and causes of injuries in women resulting from an endurance training program,” Am J Sports Med 8

(1980): 265–69.

25 Agostini, R. Medical and orthopaedic issues of active and athletic women. Hanley and Belfus, Inc.: Philadelphia, PA, 1994.

26 Graevskaya, IB, Petrov, IB, and Belyaeva, NI. “Some medical problems related to women’s sports (a review),” Sports Training

Med Rehab 1 (1989): 77–83.

27 Arendt, EA. “Orthopaedic issues for active and athletic women,” Clin in Sports Med 13(2) (1994): 483–503.

28 Knortz, KA and Reinhart, RS. “Women’s athletics: The athletic trainers’ viewpoint,” Clin Sports Med 3(4) (1994): 851–68.

29 Weesner, et al.: “Comparison of anterior and posterior cruciate ligament laxity between female and male basketball players,”

The Physician and Sports Medicine. McGraw Hill Publishing: Minneapolis, MN, May 1986.

30 Albohm, MJ “Effects of exercise on cruciate ligament laxity in male and female basketball players,” Sports Training Medicine

and Rehabilitation Vol. 2, No. 2 (1991): 97–102.

31 Albohm, MJ and Ritter, MA. “Sports Related Injuries in Women,” Journal American College Health Association 28 (1980).

32 Kibler, WB, Chandler, TJ, Livingston, BP, and Roetert, EP. “Shoulder Range of Motion in Elite Tennis Players — Effect of age

and years of tournament play,” Am J of Sports Med Vol. 24, No. 3 (1996): 279–85.

33 Borsa, PA, Lephart, SM, Irrgang, JJ, Safran, MR, and Fu, FH. “The effects of joint position and direction of joint motion on

proprioceptive sensibility in anterior cruciate ligament-deficient athletes,” Am J of Sports Med Vol 25, No. 3 (1997): 336–40.

34 Torg, JS, Vegso, JJ, Sennett, B, et al. “The national football head and neck injury registry. A 14-year report on cervical quadriplegia, 1971-1984,” JAMA 254 (1985): 3439–43.

35 The National Collegiate Athletic Association Sports Injury Surveillance Systems, Sports Science Department, Kansas City, KS.

36 The National Athletic Trainers Association, High School Injury Surveillance System, Dallas, TX.

37 Injury in America, National Academy Press, 2101 Constitution Ave., N.W., Washington, D.C. 20418, March 1988, pp. v.

38 Injury in America, National Academy Press, 2101 Constitution Ave., N.W., Washington, D.C. 20418, March 1988.
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Amy Allina The Reproductive Health Technologies Project

My name is Amy Allina and I am the Project Manager for the Reproductive Health Technologies Project. 

The Project brings together leaders from a wide range of constituencies and disciplines for the purpose of 

dialogue, debate, and consensus building on issues of reproductive health and technology, especially highly 

charged issues where science, politics, and the interests of women converge and often clash. Where consensus 

develops, this strong and varied group is able to engage in effective strategic planning and serve as a catalyst 

for powerful public education, advocacy, and public policy advances. The mission of the Project is to advance 

the ability of every woman to achieve full reproductive freedom with access to the safest, most effective, and 

preferred methods for controlling her fertility and protecting her health.

The Project’s current work is focused in four areas: (1) the potential to expand options for early abortion

through education and advocacy about medical abortion (i.e., nonsurgical or noninvasive abortion); (2) the

demand for regimens of emergency contraception to be medically accepted, FDA approved, and accessible to

women who need or want them; (3) the need to understand, grapple with, and ultimately break the unfortunate

cycle of “boom and bust” that is all too frequently the pattern for highly promoted new contraceptive methods

introduced to the U.S. market; and (4) the desperate need for woman-controlled microbicides — products that 

protect women from sexually transmitted diseases (STDs), including the AIDS virus.

My testimony today focuses on the critically important task of making microbicide research an integral part 

of the women’s health research agenda. Women need prevention products that are in their control to protect 

themselves against AIDS and other STDs. Despite the tremendous public attention that AIDS has received, and

despite the commitment of both public and private funds for AIDS research, until now little attention has been

given to the need for a prevention product that women can use, if necessary without their partners’ knowledge 

or consent. Scientists are conducting research on a variety of substances which kill or inactivate the bacteria and

viruses that cause STDs. Such products — known as microbicides — would allow a woman to protect herself

against disease without being forced to negotiate with her partner, as she must to ensure condom use. Ideally,

microbicides should be developed in spermicidal and nonspermicidal formulations to allow women the option 

of conception without the risk of disease.

Seventeen years into the AIDS crisis and at a time when the incidence of STDs is reaching epidemic proportions, the single public health message to women about prevention of STDs is “use condoms.” For many women,

this advice is inadequate or unrealistic at best. At worst, it is life threatening. There are a number of interrelated

problems with relying on promotion of condoms to protect women against STDs. First, a woman cannot decide 

on her own to use condoms. Women don’t wear condoms. In order to protect herself, a woman must negotiate 

with her partner and gain his cooperation. Even the female condom, while a welcome addition to women’s options,

requires such cooperation. Second, women often lack the power within relationships to insist on condom use.

Third, women may be hesitant to insist on condom use because they feel that asking a partner to use a condom

sends a message that they do not trust their partner to be faithful or that they are not being faithful themselves.
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The heavy reliance on promoting condom use is often justified by the argument that condoms provide the 

best protection against sexually transmitted disease, but this logic fails to recognize the difference between theory

and practice. While condoms may provide the best protection against transmission of STDs under controlledtesting conditions, a 1993 review of condom effectiveness in practice showed that, in their daily lives, women 

use woman-controlled methods (such as cervical caps or diaphragms) more consistently than condoms and 

therefore get more STD protection from these methods. It is only within the last few years that the need for

woman-controlled prevention products has begun to receive the serious attention it deserves. There are a 

number of reasons why this need is only now beginning to be recognized.

First of all, microbicide development is not an appealing investment for pharmaceutical companies. Women

need a low-cost product that can be used regularly, with every act of intercourse. Pharmaceutical companies are

unlikely to earn large profits from such a product, as they do with HIV treatment drugs such as AZT or as they

might expect with an AIDS vaccine, in part because of the difficulty of securing patent protection.

In addition, pharmaceutical companies are cautious about investing in the development of microbicides

because of their concern about liability if the product does not provide complete protection. A company making 

the claim, even with cautionary labeling, that its product will prevent transmission of HIV/AIDS, a life-threatening

disease, may attract product liability suits from people who become infected with the AIDS virus.

Another barrier to microbicide development is that sexually transmitted diseases have only recently been 

recognized as a widespread problem affecting large numbers of women, and AIDS has not been considered a

woman’s problem. Prevention and treatment of sexually transmitted diseases in women has been inadequate.

Research efforts have been severely underfunded, and education and diagnostic efforts have not targeted women,

who rarely go to STD clinics. In addition, many health care providers fail to take advantage of the regular contact

that they have with many women during family planning visits to screen for STDs and talk about prevention. 

Compounding this problem is the fact that in the early years of the AIDS epidemic in the United States, much 

of the public information about the disease reinforced the misconception that only gay men and injected drug 

users were at risk of contracting HIV. Today, rates of HIV infection in this country are rising faster among women

than among men, and heterosexual intercourse is recognized as a major mode of transmission.

The reality is that sexually transmitted diseases are a women’s health issue. Women are at greater risk of 

acquiring an STD than men. Anatomical differences make these diseases more easily transmissible to, and more 

difficult to diagnose in, women. The prevalence of some STDs is higher among teenagers in the U.S. population

than among older women. Young women have characteristics that make them particularly vulnerable to some

STDs; concerns have recently been raised that young women may be susceptible to STD infections because of 

age-related physiological changes in the cervix.

Because many STDs are asymptomatic in women, a woman may be unaware she has an STD until the infection has been active for some time. In most cases, the consequences of contracting an STD are more serious and 

permanent for women than for men. Left undiagnosed and untreated, STDs such as syphilis, chlamydia, gonorrhea,

and human papillomavirus (HPV) can have a severe, lifelong impact on women’s health causing infertility, ectopic
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pregnancy, stillbirth, premature delivery, and genital cancers. In addition, all STDs — both those which create 

visible, open sores and those that are invisible and asymptomatic — increase a woman’s risk of contracting HIV.

Heterosexual contact with an HIV-infected man is the most rapidly increasing transmission category among

women. In the United States, approximately 80,000 women between the ages of 15 and 44 are currently infected

with HIV. Women are the fastest-growing group with HIV/AIDS in the country, and internationally AIDS is already

equally common in women and men. In 1994, AIDS became the third leading cause of death among women aged

25 to 44. African-American women and Latinas suffer from HIV/AIDS disproportionately: although they make up

21 percent of all U.S. women, they account for 77 percent of AIDS cases reported among women. According to the

Centers for Disease Control and Prevention (CDC), AIDS is the leading cause of death for African-American women.

Microbicides would allow women to protect themselves against AIDS and other STDs without being forced to

negotiate condom use with their partners. While the ultimate goal is to have products that are safe and effective for

use to prevent the transmission of STDs, the reality is that it will take a number of years to complete the necessary

research on such a product and bring it to market. Researchers working on the development of new products are

pursuing some encouraging leads, and it is absolutely critical that resources be made available so that they can 

continue their efforts to develop microbicidal products.

Experts in the field acknowledge that while it is encouraging to see such research funded and moving forward, the resources available for microbicide development are still desperately inadequate. Federal funding is quite

limited, few foundations fund in this area, few pharmaceutical companies have demonstrated an interest, and the

small companies that are currently conducting research may lack the capital to market a new product successfully.

Industry estimates that it takes approximately $250 million to bring a new drug to market. Because large pharmaceutical companies have expressed little interest in pursuing microbicide research, public sector collaboration is

essential both for developing new product leads and for supporting the increasing numbers of small biotech 

companies that are entering the field of microbicide research. 

The Reproductive Health Technologies Project commends the National Institutes of Health and the Administration for their commitment to funding microbicide research. A year ago in Vancouver, Secretary Donna Shalala

announced that the National Institutes of Health would spend $100 million over the next 4 years on research

aimed at developing a safe and effective vaginal microbicides. We believe this research is critical to preserving the

health of women around the world and to stopping the spread of HIV. However, this funding — although a step 

in the right direction — is just a drop in the bucket of the investment that will be necessary to develop, test, and

make microbicidal products available to women.

The problem is, in summary, that the need for woman-controlled methods of STD and HIV prevention has

only recently been recognized as a priority, and much remains to be done to move this issue to the forefront of 

the women’s health agenda. As microbicide advocates, we will continue to expand advocacy and public education

efforts to build support for the research that is going on and to demonstrate the potential market for these products

in hopes of increasing the investment in research aimed at developing microbicides. We believe that this research

should be a priority of women’s health research because it has the potential to save and improve millions of
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women’s lives. Microbicidal products will give women all over the world one more tool to protect themselves

against the ravage of sexually transmitted diseases, including HIV/AIDS.

Thank you for your attention.

Frankie Billinglea, M.D. Medical Professionals/Persons With CFIDS

I wish to extend greetings to the distinguished members of the Chronic Fatigue Syndrome Coordinating 

Committee, particularly to the Honorable Dr. John M. Eisenberg, Interim Assistant Secretary of Health and therefore Interim Chair of the CFSCC; to the Honorable Dr. Arthur J. Lawrence, Assistant Surgeon General and Senior

Advisor to the Assistant Secretary of Health; to Dr. Karen Ezrine, Medical Officer, Office of Disability, Division of 

Medical and Vocational Policy; to representatives of the CFIDS Association of America; and last, but certainly 

not least, to patient/advocates, care givers, and patients themselves. I especially commend the persons in the last

three categories, as many of them were just here in the Nation’s capital, approximately 2 weeks ago for CFDDS

AWARENESS WEEK. I can personally attest to the mental, physical, and financial drain caused by these two 

activities taking place so closely together, as I am a patient/advocate and all I had to do was take a 30-minute 

ride on the subway from my mother’s home.

For those of you that do not know me, my name is Dr. Frankie Billingslea, a homeless physician currently 

disabled with CFIDS, without health insurance, and unemployed for 4 years. Although self diagnosed 6 years ago, 

I attempted to continue working as long as I could as there were bills to be paid — I had to go through some 

eight different “specialists” to get my diagnosis confirmed, as this disease was not even within my particular area 

of expertise or clinical experience. Of course, by this time, I was almost completely nonfunctional, and my 

career was just about shot to hell, at my particular place of employment. In my life prior to CFIDS, I was an 

Assistant Clinical Professor of Maternal-Fetal Medicine and the first black female faculty member in the College 

of Medicine at Pennsylvania State University, Hershey Campus. I am a new member of the American Association 

for Chronic Fatigue Syndrome and Medical Advisor to the Medical Professionals with Chronic Fatigue Syndrome, 

as well as a member of the CFIDS Association of America. Our support group (NPWCs) is approaching 600 in

number and is growing rather rapidly. For reasons unknown at this time, the two physician groups with the 

highest incidence of CFIDS are the obstetricians/gynecologists and the family practitioners.

I would really like to lead a normal life again, i.e., be gainfully employed, with health care and disability 

benefits; have opportunities for retirement planning; have the energy and finances for normal socialization with

family and friends; make physical and/or financial contributions to community service; and even pay homage to

that special branch of our government, the Internal Revenue Service. I would especially like to assist in improving

the health care of others, as is the usual fashion of persons selecting medicine as a career choice. Last year, when

this group convened in April, I gave a very personal testimony to express how difficult it is for persons afflicted

with this devastating ailment to get properly diagnosed and treated. As an adult, an extremely well educated 
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physician, a person with an excellent command of the English language as well as a native citizen of this country, 

my point was to arouse empathy and compassion for those patients who are undereducated; the working poor who

cannot afford health and disability benefits; those on public assistance, who usually do not get quality medical care

in an expeditious fashion; and who now have a limited time in which to develop skills and find jobs in light of the

new welfare reforms; and, most of all, the children with this devastating illness. They are dependent upon adults

for every aspect of their well being. Just imagine, if you will, a CFIDS patient on public assistance, with children,

who can’t stay on his or her feet long enough to seek appropriate medical care, let alone secure employment, but 

is yet expected to be able to support his or her family within the next 5 years. Much of the homeless population 

are not in their predicament because of some past or present vices or “demons.” Neither do they lack the desire 

to pursue the “American Dream” within their own capabilities and with the opportunities presented to them.

I have been turned down twice for Social Security/Disability, and actually have letters that state that “although

you apparently have a diagnosis consistent with CFIDS, we do not have reason to grant your request for Social

Security/Disability benefits.” We need to educate the claims examiners of third-party payers and case workers 

in Social Security/Disability offices, as well as practicing physicians. There is talk of incorporating discussion of

CFIDS in the curricula of medical schools and in the various residency programs. Although I agree with this 

wholeheartedly, we need to begin this pursuit with those persons already in practice and with the eligibility 

to bill patients and/or their third-party payers (e.g., private insurers, Social Security/Disability) for the care that 

is rendered. Although the logistics still need to be worked out to some practical conclusion, this effort should 

not have to be viewed as such a major undertaking, and therefore delayed, as every licensed physician practicing the art of medicine in the United States has to have a working knowledge of the English language.

I now await a hearing that is to take place who knows when. Since I do look forward to life after CFIDS, or a

manageable and independent one with CFIDS, I am attempting to maintain continuing medical education credits 

for licensure and membership in the American College of Obstetricians and Gynecologists, as well as with the 

Society of Perinatal Obstetricians. These tasks are very difficult without an income as well as the unpredictable

changes in my state of health. When asked, “Can’t you find something part time?” I answer, “What part of the

time?” Whether I’d be mopping the floor at some fast food establishment or exploring horizons far beyond our

own, as a very highly trained aeronautical engineer/astronaut, consistency of attendance and performance would 

be required to maintain employment part time, full time, or even some of the time. Unfortunately, I cannot make

any of these commitments at this time; however, I do look forward to the day that I can, as do the majority of

patients with this incredibly awful disease.

Someone recently remarked to me that the Social Security compensation award (an award for becoming too 

ill and dysfunctional to even be physically independent with a disease, generally perceived as something fabricated 

by someone fortunate enough to have chosen a field that has historically provided a comfortable living, mental

stimulation, as well as much needed community service) was cumulative. I then explained that my health care

providers, the pharmacy, and the health food stores where I trade, expect payment as services are rendered. 

When my “award” is issued, it won’t be millions of dollars and I will still have to go back to work, if at all 

possible. With God’s help, hopefully I will.
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During this “down time,” I have conversed with many normal weight premenopausal women with CFIDS that

admit to hyperlipidemia and abnormal lipid metabolism. As Americans are getting more and more obese and, as

more and more studies are including women, the increasing morbidity and mortality of cardiovascular disease is

being recognized in this patient population. It is now known to be the number one cause of death in both men 

and women, taking into consideration all deaths from the various cancers, AIDS, and trauma. If only lip service 

is still going to be paid to the CFIDS crisis, an equal opportunity affliction, I shudder at the impact of osteoporosis 

on the housebound and nonambulatory patients, as well as on those who have an intolerance for regular aerobic

weight-bearing physical activity — the majority of CFIDS patients. (Although fair skinned, I have never lacked 

this much pigmentation in my life, I’m sure that the warming rays of the sun in small increments, filtered by 

appropriate sunblock protection, would ease my aching fibromyalgia; but my respiratory system, both upper 

and lower, cannot tolerate the pollen/pollution mix. My photophobia has improved, though I still prefer to wear 

shaded glasses, even at night.) At least we have not had to deal with blizzards and/or flooding so far this year, 

in the District, by the Grace of God.

Fortunately, I have a roof over my head and food on the table because I could move back home to Mama

(although aging and with health problems of her own). Mama is a retired registered nurse. For this, and the 

fact that I already have some job skills (which I hope to retain or redirect, if it is God’s will), I feel truly blessed.

This has also allowed me to keep regular appointments with my health care providers and to obtain the medications and treatments that have helped me to improve to this point, e.g., civil and intelligent communication 

with other persons for more than a few minutes at a time, and better attendance at my chosen house of worship. 

Dr. Joseph A. Bellanti, an internationally renown pediatric allergist/immunologist based at the Georgetown University Medical Center, located here in Washington, has admitted to the difficulties he has had in getting grant

approval and funding for clinical trials and treatment for his CFIDS patients, because of all the layers of ineffective

federal bureaucracy. I mention this not only because he provides my primary care, but he is also a very sincere 

and compassionate man; I have the highest regard for him and his efforts. (How many adults do you know that 

rely on a pediatrician for medical care?)

Lastly, as there are increasing numbers of cases of CFIDS being reported in persons of color, particularly 

blacks and Native Americans, two groups who, unfortunately, have been and still are stigmatized as being naturally

lazy, crazy, and genetically depressed, by some not yet clearly identified authority, I would think that every effort

would be made to inform physicians and other health care professionals of color of this illness and its many ramifications, as many of their patients are persons of color or “non-whites.” The term “minority,” when used to define 

or describe racial and/or ethnic background, is both statistically incorrect as well as socially demeaning. A golden

opportunity was missed last summer when the National Medical Association, the National Dental Association, the

Association of Black Nurses, and even the National Bar Association, all convened during the last week of July-first

week of August in Chicago, Illinois. Chicago has also been the national headquarters of the American Medical 

Association since 1902. The upcoming annual meeting of the NMA is scheduled for August 2-8, in Honolulu,

Hawaii. Unfortunately, I am too physically and financially challenged to make such a journey. I certainly have no 

lack of time. The national headquarters of the above-mentioned professional organizations all are conveniently

located here in Washington, D.C. Also, remember that clinicians are very busy saving lives and fighting disease 
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and that academic physicians have the addi-tional charge of educating young doctors in training. Therefore, they

need ample notification of any educational programs to schedule themselves accordingly. The sense of urgency 

of the CFIDS crisis needs to be repeatedly emphasized, as well. (I continue to refer to this scourge of humankind

that has disrupted the quality and, in some cases the quantity of life in approximately 2 percent of the American

population as CFIDS, as there is currently much debate as to what it is to be called).

I look forward to eradicating this awful burden on the health of the world family, and, on the economy as 

well. There was a time when I could have easily wished this horrendous fate upon my worst enemy; but now, 

I just can’t. It would not only be inhumane and unforgivable, but would completely contradict the oath 

I took when I became a physician.

I would now like to ask for a moment of silence in memory of the far too many patients lost to this disease, 

usually at their own hand, or with physician-assisted suicide. Mrs. Judith Curran, a 42-year-old mother of two 

little girls, former registered nurse, and wife of a psychiatrist who personally “handled her case,” rather than 

referring her to a colleague, only made headlines in August 1996, as she was the 35th known case of the infamous Dr. Jack Kevorkian and not because of the devastation of her illness, which led her to make this tragic 

decision. I am especially saddened when I hear of suicide cases in young children and adolescents, who never 

even had a chance of pursuing goals and living life itself. They, like their adult counterparts, died primarily 

of despair and hopelessness in a country considered to have the most advanced medical facilities and highly 

trained personnel in the world today.

Thank you for your time and kind attention; as well as positive and timely action on this matter of 

utmost urgency.

Linda Burnes Bolton, Dr.P.H., R.N., F.A.A.N. National Black Nurses Association, Inc.

The National Black Nurses Association, Inc. is a 501(c)3 professional nursing association representing over

150,000 black nurses throughout the United States and Eastern Caribbean. The Association was founded in 1973

to investigate, define, and determine the health needs of black Americans and to conduct research, health promotion, and health policy initiatives to improve the health and well being of individuals and communities. The Association is headquartered in Washington, D.C. It’s current president is Dr. Betty Smith Williams, Professor Emeritus,

California State University, Long Beach, and former Dean of Colorado University, School of Nursing. The Association’s Position Statement on Women’s Health, published in 1994, advocates for increased research funding on issues

disproportionately affecting black women and other women of color including: premature labor and it’s sequelae 

of premature birth; low-birthweight infants and infant mortality; cardiovascular disease including stroke; breast 

and cervical cancer; physical and psychological trauma resulting from crime, battery, and other acts of violence; 

diabetes and kidney disease; osteoporosis and other debilitative disorders; systematic lupus and arthritis; infertility;
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infectious diseases including tuberculosis and AIDS/HIV; clinical depression and other mental health disorders; 

barriers to preventive health care utilization and practices; and the impact of poverty, lack of access to education,

and economic viability on women’s health and well being.

Education and Career Issues

The Association urges the National Institutes of Health (NIH) to provide funding to increase the number 

of black health professional research scientists in all fields. The number of black nurses with earned doctorates 

represents less than 1 percent of all professional nurses in the United States. Black nurses with earned doctorates

have contributed to our scientific knowledge in a variety of areas. Work supported by NIH on preventive health

behavior in reducing risk of acquiring and transmitting HIV/AIDS (Loretta Sweet Jemont, Ph.D.); increasing black

women’s utilization of cancer screening and treatment services (Sandra Miller Underwood, Ph.D.); and multifactorial, multivariate repeated-measure analysis of premenstrual syndrome — a health issue that results in hundreds 

of thousands of disability days for women annually (Dr. Ora L. Strickland), are a few examples of contributions

made in women’s health research. Funding is necessary to support more doctoral and postdoctorate programs 

for women research scientists.

Obstetrical Care

Delayed entry into prenatal care continues to be a major predictor of low birthweight and poor perinatal 

outcome. Research on stress and social support as mediating factors affecting prenatal care utilization behavior 

has been funded by NIH. We require additional funding to test interventions among diverse populations which

would improve prenatal care utilization; and decrease the adverse effects of stress. Research on reduction of stress

and the provision of community-based social support services has been limited. NIH has funded research to identify biochemical markers of stress in pregnancy (Hobel, NICHD, 1994). As a co-investigator of this research initiative, our preliminary data indicates a correlation between behavior in pregnancy and birth outcome. Funding is

required to test mediating interventions during pregnancy which will decrease the incidence of poor perinatal outcome. This research has a potential for significant cost savings if we can decrease the incidence of preterm labor.

Research Across the Life Span

NIH should maintain the Office of Research on Women’s Health as a center for sponsoring a comprehensive

research enterprise. Additional funding should be allocated to support research initiatives on life span phases of

women. These include:

• Prenatal and perinatal,

• Childhood and preconceptual,

• Puberty,

• Reproductive adults,
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• Climacteric and menopausal, and

• Postmenopausal.

A comprehensive matrix of research across the life span should consider phases of women’s lives.

Research Agenda Topics

Research funding to promote women’s health must include a complimentary approach including:

• Basic science research,

• Epidemiological and health outcomes research,

• Human studies and clinical trials,

• Nutritional and nonnutritional dietary research,

• Behavioral research,

• Historical and ecological research of the effects of this factor on the risk of disease occurrence 

(Example: ecological factor’s influence on the risk of reproductive hormonal-related cancers.),

• Organ systems and disease pathophysiology, and

• Lifestyle and health-beliefs research including social isolation, disability, and chronic disease management using self-care and alternative-care intervention. (An example of the latter is the Duke University

researchers findings (Manton, 1993). The research team documented decreased disability rate through 

education of study participants, early interventions, and aggressive chronic disease management.)

In summary, the National Black Nurses Association, Inc. urges NIH to increase it’s funding for women’s 

health research and the Office of Research of Women’s Health. We urge NIH to support the following:

Women’s Health Research Recommendations

• Increase funding for issues affecting women’s health across the life span. These include:

– Coronary heart disease and vascular disease,

– Diabetes, urologic, kidney, and connective tissue diseases,

– Breast, cervical, and ovarian cancer,

– Osteoporosis,

– Functional disability,
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– Preterm labor and it’s sequelae,

– Physical, psychological, and emotional abuse,

– Alcohol and substance abuse,

– Infectious diseases including sexually transmitted diseases, tuberculosis, and AIDS/HIV,

– Obesity and eating disorders,

– Depressions and mental disorders,

– Poverty and its effects on human potentiation, and

– Violence and crime and their effects on human potentiation.

• Establish an effective recruitment and retention strategy to increase the number of women from 

diverse cultures included in NIH-sponsored clinical research trials.

• Increase community availability to NIH-sponsored clinical treatment centers.

• Encourage partnerships between professional societies, community agencies, and NIH principal 

investigators to assure inclusion of culturally diverse human subjects.

• Increase funding for NIH training grants for master, doctorate, and postdoctoral research scientists.

• Provide funding for NIH technical assistance workshops, sponsored by the Office of Research on 

Women’s Health, to be held at national conferences.

• Develop a public-private partnership to fund an integrated, comprehensive research agenda which 

addresses the breadth of social, environmental, physical, pathological, psychological, and behavioral 

issues which impact the health of women.

References

National Black Nurses Association. Women’s Health Position Statement. NBNA, Washington, D.C., 1994.

Hobel, C. Behavioral in Pregnancy Study, NICHD, R01HD 29553, 1994.

Manton, KG, et al. “Estimates of Change in Chronic Disability and Institutional Incidence and Prevalence. Rates in U.S. 

Elderly Population,” Journal of Gerontology 48(4) (1993): 5153–66.
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University of Health Sciences

Lori A. Boyajian, D.O. College of Osteopathic Medicine

The University of Health Sciences College of Osteopathic Medicine supports the advancement of women’s

health through research. This includes, but is not limited to, research into all aspects of women in biomedical

careers, medical school curricula, establishment of postdoctoral training in women’s health, and the continuing

medical education of professionals about women’s health. We recognize the difficulties in establishing norms 

for education and research, but we also understand that we can help establish changes that will affect the health 

of women for generations.

We believe that some basic concerns need be addressed in order for effective changes to be implemented.

These are all interrelated and interdependent. The main points of the testimony are:

• The development of medical school curricula to address women’s health,

• The encouragement of women to enter academic medicine,

• The establishment of postgraduate training programs in the form of residencies and fellowships,

• The continued education of practicing clinicians about women’s health,

• The establishment of departments of women’s health in all medical schools, and

• The establishment of a speaker’s bureau to disseminate information to schools, professional societies, 

and associations about women’s health.

Joel Osler Brende, M.D. Mercer University School of Medicine

We live in a violent society where the high incidence of domestic violence seems to be rising. Each year,

approximately 12 million women are battered1 and 3 million children are abused.2 Females, in particular, report

increasingly high incidences of physical or sexual abuse.3–5 When victims are not protected and receive no help for

their emotional distress, there will be long-term consequences in the form of emotional, behavioral, and physical

symptoms. Members of the medical professions can potentially help many victims, both during the immediate 

or acute phase as well as the chronic phase of posttrauma symptom expression, if they know about their patients’

trauma histories and how these may be related to their symptoms. But many physicians are not aware of the problem, particularly since victims don’t generally talk openly about being abused. None the less, it has been reported

that 22 to 35 percent of women who visit emergency rooms have acute physical or emotional symptoms related 

to an abusive relationship. The majority of these women are not asked by physicians whether or not they have 

been victims of trauma or abuse and most are afraid or ashamed to talk about it, as one woman described: 
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“When I went to the emergency room, I was terrified that they would ask me how I got my injuries and terrified

that they would not.”6

What are the symptoms reported by victims during either acute or chronic posttraumatic recovery? Shortly

after a traumatic event, survivors report sleep disturbance, nightmares, irritability, disturbed interpersonal relationships, physiological hyperarousal, and intrusive memories.7 Chronic symptoms may be similar but often victims

attempt to block their traumatic experiences from memory and become emotionally detached8 yet continue to

experience periodic ‘flashbacks’ or dreams of dissociated9 abusive experiences.

Survivors of acute traumas frequently have a variety of medical complaints including headaches, nausea, 

diarrhea, vomiting, muscle aches, chest pain, restlessness, tremors, sweating, and general fatigue.10 In one study 

of disaster survivors, physical complaints were the primary symptoms in 66 percent of the cases11 and included

respiratory diseases, gastrointestinal disorders, diabetes, alcoholism, drug problems, and hypertension. Sixty 

percent of these survivors sought medical help within 4 months while the remaining 40 percent did not visit 

physicians until many months or even years later.12

Survivors of early life traumas often forget what happened. In one study, 38 percent of women abused during childhood did not recall their traumatic experiences 20 years later.13 Although victims have often consciously

forgotten what happened,14–16 their bodies generally remember.17 It has been discovered that forgotten or distorted

traumatic memories may be expressed in the form of somatic symptoms.18,19 Researchers have found that girls 

who have been abused have a much higher incidence of chronic pelvic pain,20,21 gastrointestinal complaints, skin

problems, headaches, asthma, and urinary problems — compared to girls who were not abused.22 Children abused

while they were very young may suffer from alexithymia (the absence of emotional awareness)23 and develop physical symptoms and somatization disorders in an unconscious attempt to express basic emotional needs for nurturing.24

Some researchers, studying 100 women with somatization disorders, found that more than 90 percent reported

physical or sexual abuse during childhood.19

Other researchers have found a high correlation between functional gastrointestinal (GI) symptoms (including irritable bowel syndrome [IBS]) and histories of trauma, reported in several studies to be as high as 50 to 

80 percent.25–27 In a study of 50 women with gastroesophageal reflux disease (GERD), noncardiac chest pain

(NCCP), and IBS, the incidence of prior sexual or physical abuse was 56 percent.24 There has also been found 

to be a significant relationship between victims of childhood sexual experiences and adults with eating disorders.

Forty to 60 percent of women suffering with bulimia, anorexia, or compulsive overeating reported having been 

victimized during childhood.28

Memories not only take the form of somatization but can be expressed physiologically in the form of sleep 

terrors, panic disorder with palpitations, chest tightness, shortness of breath, and other physiological manifestations of sympathetic hyperarousal29 such as:30
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• Hypertension,

• Stress-related ventricular fibrillation,

• Nonischemic myofibrillar degeneration,

• Stress-related coronary artery disease,

• Migraine headaches,

• Raynaud’s disease,

• Muscle contraction headaches, and

• Other muscle contraction dysfunctions.

Any one of these physiological symptoms, as well as ‘flashbacks’ of the original trauma, can be triggered 

by one or more sensory reminders, such as the smell of smoke, the sight of blood, the sound of gunfire, a media

report of rape, a television documentary about cancer deaths, etc.

In the most severe cases of chronic hyperarousal, patients may suffer from the effects of a toxic excitatory 

neurotransmitter, glutamate,31 which causes a buildup in lactic acid and damage to neural substrates resulting in

intractable aggressive behavior, diminished capacity for interpersonal bonding, alexithymia, attention deficit-related

disorders,32 and loss of memory and concentration.33 Many of these individuals suffer from behavioral problems

and become perpetrators of abuse upon others.

Victims of sexual trauma may also experience a high incidence of chronic pain,34,35 headaches,36 musculojoint pains, fibromyalgia, and other functional pains. Their pain thresholds are often altered — either too high 

or too low. Sometimes they have lower available levels of their own internal pain killers, endogenous opioids,37

causing recurring chronic pain. In contrast, survivors may also have increased levels of endogenous opioids, 

particularly when exposed to stressful circumstances. At such times they may feel physically and emotionally

numb.38 Such individuals have been known to induce stress in their lives and become self destructive in order 

to experience a sense of control over their internal discomfort — exemplified by those many women who were 

traumatized as children and later became battered spouses, seemingly attracted to abusive men like flies 

attracted to a bright light.39,40

During the past 2 years, I have been interested in the relationship between trauma and clinical symptoms 

and have gathered data about the incidence of trauma and the severity of posttraumatic symptoms from women 

in the following four settings:

• Group 1 — comprised of 48 female patients hospitalized for psychiatric reasons,
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• Group 2 — comprised of 20 female patients examined in an internal medicine clinic who also reported

symptoms of depression and anxiety;

• Group 3 — comprised of 47 female patients receiving treatment for emotional problems in a private 

psychiatric outpatient setting; and

• Group 4 — comprised of 11 females employed in a psychiatric hospital.

Using a newly validated instrument in the form of a self-report questionnaire,41 I found that the women 

in these four groups reported one or more of 43 possible stressful or traumatic events, among which were 

eight violent stressors:

1. Violence between family members,

2. Being abused as a child,

3. Witnessing violence or murder;

4. Being a victim of sexual trauma by a family member or friend;

5. Beaten by a spouse;

6. Victim of assault;

7. Being a victim of repeated sexual abuse; and

8. Having a loved one murdered.

They were also asked to complete a 24-question assessment pertaining to possible symptoms including 

anxiety, depression, feelings of powerlessness, loss of concentration, distrust, memory lapses, anger, guilt, 

unresolved grief, suicidal thinking, purposelessness, and difficulties with interpersonal relationships.41

The Results

Group 1 (hospitalized women psychiatric patients) — Reported the highest numbers of stressful or traumatic

events from a list of a possible 43. This group averaging 18 stressors per patient; and also reported the highest

numbers of violent stressors — averaging 3.4 of the eight listed — and the most severe symptoms.

Group 2 (medical patients) — Reported the next highest number of stressful events — 12 — and the second

highest numbers of violent stressors — an average of two per patient. They suffered from a variety of medical 

complaints. Although they had moderate levels of depression and anxiety, they had surprisingly high total 

symptom scores associated with their histories of trauma and abuse.
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Group 3 (psychiatric outpatients) — Averaged nine stressful events with an average of 1.8 violent 

stressors. This group had few physical complaints but the second highest level of depression and anxiety.

Group 4 (control group of hospital employees) — Averaged ten stressful events with an average of 

1.5 violent stressors per person although these individuals were symptom free.

Summary

The literature, as well as my personal experience, points to the fact that many patients, particularly medical

patients who have moderate levels of anxiety and depression, suffer from unresolved traumatic experiences. 

These problems remain undetected and untreated, in part because physicians tend not to ask their patients 

questions pertaining to prior stressors, violent traumatic experiences, or related posttraumatic symptoms.42

Recognizing the need to integrate psychosocial and medical diagnosis and treatment, the Departments of 

Internal Medicine and Psychiatry at Mercer University School of Medicine, where I am a faculty member, have 

initiated a training program for internal medicine residents to improve their interviewing and listening skills. 

They are being taught that it is important to learn how to empathically ask the right questions, listen with sensitivity, and assess their patients’ histories of trauma and stress so that appropriate treatment and/or referral may 

be forthcoming. We have now added a Behavioral Medicine Clinic wherein medical patients with depression, 

anxiety, and chronic pain are being evaluated more thoroughly by residents who are also learning the use of a 

trauma assessment.41 The results have been very positive and patients appear to be responding with more rapid

recoveries in some cases, reduced need for pain medication in other cases, and less frequent medical visits in 

many. As a result of this success, a collaborative research project is planned in order to evaluate this diagnostic 

and treatment process more thoroughly.

We are hoping that this new program and proposed research will provide information that will help to 

improve training programs for medical personnel and also provide data about the effectiveness of improved 

diagnosis and treatment of medical patients with emotional problems.

Supplemental Information and Tables

The instrument used36 to gather this data included 43 possible stressful or traumatic events, among which 

were eight violent stressors (described earlier).

The women were also asked to complete 24 questions pertaining to possible symptoms including anxiety 

and depression.
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Each of the four groups reported the following data pertaining to numbers of stressors:

• Members of Group 1 (female psychiatric inpatients) — Reported the greatest number of stressful events,

averaging 17 per patient, as well as the highest numbers of violent stressors, averaging 3.4 of the eight listed.

• Members of Group 2 (female medical outpatients) — Reported the second highest number, an average of 12

different stressful events, and the second highest numbers of violent stressors, an average of two per patient.

• Members of Group 3 (female psychiatric outpatients) — Reported an average of nine stressful events and 

1.8 violent stressors per person.

• Members of Group 4 (female hospital employees) — Reported ten stressful events and 1.5 violent stressors

per person.

Each of the four groups were ranked according to the frequency of being affected by violent stressors, as follows:

• Living in a violent family was reported by 68 percent of Group 1, 55 percent of Group 2, 36 percent 

of Group 3, and 27 percent of Group 4.

• Being abused as a child was reported by 60 percent of Group 1, 20 percent of Group 2, 34 percent 

of Group 3, and 27 percent of Group 4.

• Witnessing violence was reported by 52 percent of Group 1, 25 percent of Group 2, 19 percent 

of Group 3, and 27 percent of Group 4.

• Being sexually abused by a family member or friend was reported by 52 percent of Group 1, 

10 percent of Group 2, 34 percent of Group 3, and 9 percent of Group 4.

• Being beaten by a spouse was reported by 48 percent of Group 1, 40 percent of Group 2, 21 percent 

of Group 3, and 9 percent of Group 4.

• Being a victim of physical assault was reported by 1.40 percent of Group 1, 20 percent of Group 2, 

21 percent of Group 3, and 27 percent of Group 4.

• Being a victim of repeated sexual abuse as a child was reported by 35 percent of Group 1, 15 percent 

of Group 2, 21 percent of Group 3, and 18 percent of Group 4.

• Having a loved one murdered was reported by 23 percent of Group 1, 25 percent of Group 2, 11 percent 

of Group 3, and 9 percent of Group 4.
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Each of the four groups were tested for severity of posttraumatic symptoms and ranked accordingly, as follows:

• Group 1 (48 female psychiatric inpatients) — Had the highest total symptom score of 43 of a possible 

96 which was in the fairly severe range.

– The anxiety score of 4.7 out of 8 was in the moderately severe range and second highest of all groups. 

– The depression score of 3.8 out of 8 was in the moderate range and the third highest of all the groups.

• Group 2 (20 female patients with medical problems) — Scored slightly lower than Group 1 with a total 

score of 41, the second highest of all groups.

– The anxiety score of 5.4 out of 8 was the highest score of all groups.

– The depression score of 1 out of 8 was the lowest of all groups.

• Group 3 (47 female patients receiving outpatient treatment for emotional problems) — Had moderately 

high total symptom scores of 36, the third highest of all groups.

– The anxiety scores of 6.1 out of 8 was the highest of all groups.

– The depression score of 5.2 out of 8 was the second highest of all groups.

• Group 4 (11 female hospital employees) — Had a total symptom score of 12, which was a mild score 

and the lowest of all groups.

– The anxiety score was 1.

– The depression score was 1.

Total Total Relationship

Traumas Score Anxiety Depression Purposelessness Problems

Female psychiatric inpatients 17 43 4.7 3.8 3.1 3.6

Female indigent medical outpatient 12 41 5.4 1 3.5 3.3

Female psychiatric outpatients 9 36 6.1 5.2 2.6 2.9

Female hospital employees 10 12 0 1 0 0
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References

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2 Rosenberg, MS and Drossman, BR. The child witness to marital violence. Treatment of family violence. RT Ammerman 

and M Herson (eds.). New York, NY: John Wiley Publishers, 1990, pp. 183–210.

3 Blinder, RL. Why women don’t report sexual assault. Journal of Clinical Psychiatry 42 (1981): 437–38.

4 Margo, GM and McLees, EM. “Further evidence for the significance of a childhood abuse history in psychiatric inpatients,”

Comprehensive Psychiatry 32 (1991): 362–66.

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gastrointestinal disorders and history of abuse: A preliminary model,” American Journal of Medicine 97 (1994): 108–118.

6 Clevenger, DE. “Family violence: A growing epidemic, FACETS,” American Medical Association. March 1992.

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J Strachey (ed.). London: Hogarth Press, 1895/1955, pp. 1–181.

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LK Michelson and WJ Ray (eds.). Handbook of dissociation: Theoretical, empirical, and clinical perspectives, New York, NY:

Plenum Press, 1996, pp. 367–79.

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of Mental Nervous Disorders 74 (1986): 4–14.

12 Clayer, JR, Bookless-Pratz, C, and Harris, RL. “Some health consequences of a natural disaster,” The Medical Journal 

of Australia 143 (1985): 182–84.

13 Williams, LM. “Recall of childhood trauma: A prospective study of women’s memories of child sexual abuse,” Journal 

of Consulting and Clinical Psychology 62(6) (1994): 1167–76.

14 Pope, H and Hudson, J. “Can individuals “repress” memories of childhood abuse? An examination of the evidence,” 

Psychiatric Annals 12 (December 1995): 715–19.

15 Bremner, JD, Krystal, JH, Charney, DS, et al. “Neural mechanisms in dissociative amnesia for childhood abuse: Relevance to 

the current controversy surrounding the ‘false memory syndrome’,” American Journal of Psychiatry 153:(7) (1996): 71–82.

16 Herman, JL and Schatzow, E. “Recovery and verification of memories of childhood trauma,” Psychoanalytic Psychology 4

(1987): 1–14.

17 van der Kolk, B. “The body keeps the score: Memory and the evolving psychobiology of posttraumatic stress,” Harvard

Review of Psychiatry, Harvard Medical School 1 (1994): 253–65.

18 Morrison, J. “Childhood sexual histories in women with somatization disorder,” American Journal of Psychiatry 146 (1989):

239–41.

19 Pribor, EF, Yutzy, SH, Dean, JT, et al. “Briquet’s syndrome, dissociation, and abuse,” American Journal of Psychiatry

150 (1993): 1507–11.

20 Walker, EA, Katon, W, Harrop-Griffiths, J, et al. “Relationship of chronic pelvic pain to psychiatric diagnoses and 

childhood sexual abuse,” American Journal of Psychiatry 145 (1988): 75–79.

21 Walker, EA and Stenchever, MA. “Sexual victimization and chronic pelvic pain,” Obstetrics and Gynecology Clinics 

of North America 20 (1993): 795–807.
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22 Feliti, VJ. “Long-term medical consequences of incest, rape and molestation,” Southern Medical Journal 84 (1991): 328–31.

23 Krystal, H. “Psychoanalytic views on human emotional damages,” Posttraumatic stress disorder: Psychological and Biological

Sequelae, van der Kolk (ed.). Washington, D.C.: American Psychiatric Press, 1984, pp. 2–29.

24 Green, AH, Wilson, JP, and Lindy, JD. “Conceptualizing posttraumatic stress disorder: A psychosocial framework,” Trauma

and its wake. CR Figley (ed.), 1985; pp. 135–54.

25 Drossman, DA. “Sexual and physical abuse and gastrointestinal illness,” Scandinavian Journal Gastroenterology Supplement

208 (1995): 90–96.

26 Drossman, DA, Leserman, J, Nachman, G, et al. “Sexual and physical abuse in women and functional or organic gastrointestinal disorders,” Annals of Internal Medicine 113 (1990): 828–33.

27 Walker, EA, Katon, WJ, Roy-Byrne, PP, et al. “Histories of sexual victimization in patients with irritable bowel syndrome 

or inflammatory bowel disease,” American Journal of Psychiatry 150(10) (1993): 1502–1506.

28 Palmer, RL, Oppenheimer, R, Dignon, A, et al. “Childhood sexual experiences with adults reported by women with eating

disorders: An extended series,” British Journal of Psychiatry 156 (1990): 699–703.

29 Faravelli, C, Webb, T, Ambonetti, A, et al. “Prevalence of traumatic early life events in 31 agoraphobic patients with panic

attacks,” American Journal of Psychiatry 142(12) (1985): 1493–95.

30 Everly, GS. “An integrated two factor model of posttraumatic stress,” Key Papers and core concepts in posttraumatic stress. 

GS Everly and JM Lating (eds.). New York, NY: Plenum Press; 1995, pp. 27–48.

31 Olney, JW. “Neurotoxicity of excitatory amino acids,” in E McGeer, J Olney, and P McGeer (eds.), Kainic acid as a tool 

in neurobiology. New York, NY: Raven; 1978, pp. 95–122.

32 Nemiah, JC. “Alexithymia: Theoretical considerations,” Psychotherapy Psychosom 2 (1947): 199–205.

33 Everly, GS and Horton, AM. “Perceptual and Motor Skills,” Neuropsychology of PTSD. New York, NY: Raven, 1989,

68:807–810.

34 Haber, JD and Roos, CL. “Effects of spouse abuse and/or sexual abuse in the development and maintenance of chronic 

pain in women,” Advances in Pain Research and Therapy 9 (1985): 889–95.

35 Silverman, HS, Munakata, JA, Enes, H, et al. “Regional cerebral activity in normal and pathological perception of visceral

pain,” Gastroenterology 112 (1997): 64–72.

36 Domino, JV and Haber, JD. “Prior physical and sexual abuse in women with chronic headache: Clinical correlates,”

Headache 27 (1987): 310–14.

37 van der Kolk, BA, Pitman, RK, Orr, S, et al. “Endogenous opioids, stress-induced analgesia, and posttraumatic stress 

disorder,” Psychopharmacology Bulletin 25 (1989): 417–22.

38 Pitman, RK, van der Kolk, BA, Orr, SP, et al. “Naloxone-reversible analgesic response to combat-related stimuli in 

posttraumatic stress disorder: A pilot study,” Archives in General Psychiatr 47 (1990): 541–44.

39 Dutton, D and Paiter, SL. “Traumatic bonding: The development of emotional attachments in battered women and 

other relationships of intermittent abuse,” Victimology 6 (1981): 139–68.

40 van der Kolk, BA. “The compulsion to repeat the trauma,” Psychiatric Clinics of North America 12 (1989): 389–411.

41 Brende, JO, Coleman, M, and Arthur, GL. “Validation and introduction to the Twelve Theme Post-Traumatic Symptom 

and Fragmentation Assessment,” Georgia Journal of Professional Counseling 5(1) (1997): 63–74.

42 Sugg, N. “Domestic violence: Making realistic interventions in a primary care setting,” The Internist (October 1993).
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A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Evelyn J. Bromet, Ph.D. Sjögren’s Syndrome Foundation Inc.

The Sjögren’s Syndrome Foundation is a nonprofit organization established to educate Sjögren’s patients 

and their families, doctors, and the public about the diagnosis and treatment of Sjögren’s syndrome, to develop 

programs and literature to help patients learn how to manage their symptoms, to publicize recent advances in 

the treatment of Sjögren’s syndrome, and to promote and support behavioral and basic science research on the 

etiology and course of this disease.

Testimony

As a patient with Sjögren’s syndrome, a scientist specializing in epidemiology, and Vice President-Elect of the

Sjögren’s Syndrome Foundation, I would like to impart a simple but pressing message, namely, that we must stop 

living in a state of medical and scientific ignorance about Sjögren’s syndrome, a disease that is as prevalent as

Alzheimer’s disease and as insidious and chronic as schizophrenia. We must emerge from the Dark Ages and attack

this disease on all fronts — not in the 21st century, but starting now. In the early 1980s, the National Institute 

of Mental Health approached the lack of knowledge about clinical depression with a large-scale, public education 

program called the Depression Awareness Recognition and Treatment Program, or D/ART program. I propose that 

we address the general ignorance about the etiology, clinical detection, and treatment of Sjögren’s syndrome with 

the Sjögren’s Medical Awareness Research and Treatment Program, or S/MART program.

Why is Sjögren’s syndrome in the Dark Ages when we know that it is a common, progressive, debilitating,

autoimmune disorder that afflicts 2 to 4 million patients, mostly women? At the 6th International Conference on 

Sjögren’s Syndrome in October 1997, it was called the most prevalent autoimmune disorder. The symptoms of 

Sjögren’s syndrome were first described one century ago, yet we still have no cure for this disease. So why is it that

the general population, primary care physicians, dentists, epidemiologists, clinical researchers, most basic scientists,

and probably most people in this room, give patients a blank look when we tell them we have Sjögren’s syndrome?

Why is the medical community so unaware of this disease that even when the signs, symptoms, and lab tests point

so obviously in that direction, we are frequently misdiagnosed? Why is there so little basic science research on this

disorder and almost no clinical and epidemiologic research? And why are the available treatments so limited in

scope when the patient or consumer pool involves 2 to 4 million people?

I will try to answer these questions by describing the S/MART program one letter at a time. Starting with 

the “S,” for Sjögren’s syndrome, the disorder itself has characteristic features that some professionals seem to 

know about — dry eyes and dry mouth — but the severity, discomfort, pain, and chronicity of these symptoms 

are not widely appreciated. Dryness of the mouth is not just a matter of inconvenience, like an inability to eat 

crackers, bread, or meat. More importantly, the lack of saliva causes difficulty swallowing, rampant tooth decay, 

and opens our mouths to opportunistic bacterial and yeast infections that cause excruciating ulcers and sores. 

A dry mouth and throat are very painful, and talking and lecturing are sometimes impossible. With lack of tears, 

our eyes burn and itch, our eyelids sometimes stick to our eyes, we get frequent eye infections, and some patients

get corneal ulcers, abrasions, and become blind. The pain in my eyes sometimes feels like someone stuck an ice

pick through my eyeball. 
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In addition to the lack of saliva and tears, the major symptom reported by patients with Sjögren’s syndrome 

is debilitating fatigue. In addition, depression, as well as fever, joint and muscle pain, irritable bowel, sleep problems, and weakness occur very frequently. Some patients have Sjögren’s syndrome in the absence of other autoimmune diseases, or primary Sjögren’s syndrome, while others have Sjögren’s plus other autoimmune diseases, 

or secondary Sjögren’s syndrome. In the worst case scenario, a sizable subgroup of Sjögren’s patients develop 

lymphoid malignancy. For the majority of us, however, the symptoms I described are disruptive and persistent, 

and interfere significantly with our productivity and with the quality of our lives. Like other chronic and incurable 

diseases, they affect the whole family, not just the patient. 

So why is this intractable, intrusive, disruptive, multisystem and multisymptom disease in the Dark Ages 

compared to other equally prevalent illnesses like schizophrenia and Alzheimer’s disease? Why do experts refer 

to Sjögren’s as a “rare disorder” when, even with the inadequate epidemiology we have, it is believed to affect 

2 to 4 million people? Let me suggest two possible reasons why most of us had never heard of this illness until 

we got the diagnosis. The first is a sociological explanation — women’s medical complaints are often dismissed 

as “stress-related.” Indeed, some of us have stress-related symptoms — we lead complicated lives with multiple

demands, what sociologists refer to as “job vs. non-job conflict.” And we buy into this notion ourselves and 

are willing to assume that our symptoms probably are caused by stress. Hence, we do not investigate their origin 

any further. 

The second is that Sjögren’s syndrome is usually diagnosed at the time of menopause. Our friends and 

physicians tell us, erroneously, that dryness is part of normal aging. It is not true, but we believe them and try 

to cope with it. However, by not starting appropriate interventions, like preservative-free eye drops and nightly 

fluoride treatments, we turn a bad situation into a nightmare.

Thus, Sjögren’s syndrome is a progressive, incurable autoimmune disease that is comorbid with a host of 

other serious symptoms and diseases. We know enough about how to diagnose it that there is no longer any 

excuse for the general ignorance about the disorder.

The “M” and “A” stand for medical awareness. It is clear that primary care physicians are very poor at detecting Sjögren’s syndrome even though this disease is chronic and persistent. When it is not diagnosed, the damage 

it does to our eyes and mouth, and the medically unexplained pain and suffering we experience, are endless. No

formal studies have documented the extent to which, and the reasons why, Sjögren’s syndrome is underdetected. 

We also know that the correlations between subjective and objective measures of dryness are imperfect, but there

are no studies designed to explicate the mechanisms underlying these low correlations.

How can we make the medical and dental community more aware of Sjögren’s syndrome so that early detection and a reduction in long-term morbidity can occur? One place to start is in medical and dental school curricula,

which need to cover Sjögren’s syndrome in as much depth as any other major chronic illness. As more and more

women enter medical and dental schools, the pathology and clinical symptoms of diseases that afflict women in

particular may hit home in a personal way. Perhaps this new generation of physicians will have a deeper understanding of Sjögren’s syndrome than their predecessors. A second place is with new books on women’s health. 
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A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

NIH and organizations like the Sjögren’s Syndrome Foundation must alert authors immediately to omissions about

Sjögren’s syndrome. For example, I am the section editor for the mental health section of a new, comprehensive

volume on women and health. When I looked at the chapter titles in the section on autoimmune diseases, there

was no chapter on Sjögren’s syndrome, while there were chapters on lupus and other conditions which affect fewer

women. We changed that, and the book will now cover Sjögren’s syndrome. Third, we also need to develop awareness programs for dentists and physicians that emphasize the symptoms and medical management of this disease 

so that we reduce the glaring underdetection and poor medical management that exist today. 

The “R” stands for research — basic, clinical, epidemiologic, and behavioral. Sjögren’s syndrome has been 

as underresearched by biomedical researchers as it has been underdetected by medical professionals. One reason 

is that we patients have not lobbied effectively enough on our own behalf. For that, we take responsibility and 

are trying to remedy this situation through the Sjögren’s Syndrome Foundation. A second reason is that Sjögren’s

syndrome affects women primarily, and women’s health problems, especially problems occurring to middle-aged

women, have been notoriously understudied. A third, perhaps most important reason is that the disease affects

multiple organ systems — the eyes, mouth, central nervous system, respiratory system, vascular system, the GI

tract, etc. From a federal-funding perspective, it falls between the cracks of a number of institutes, namely, NIAMS,

NIAIDS, NEI, NIDR, NHLBI, and NIA. It does not appear to be the mission of any of these institutes to promote

this disease in particular. It is important to acknowledge that NIH has long been the leading source for research 

on Sjögren’s syndrome beginning in the 1950s. Indeed, NIH has been responsible for several key discoveries on 

the pathogenesis of this disease. However, the magnitude of current basic science research is limited, and there 

is almost no clinical, epidemiologic, or behavioral research.

As an epidemiologist, I went to the medical library when I was diagnosed with Sjögren’s syndrome to learn

about the incidence, prevalence, risk factors, genetics, natural history, and prognostic variables for this disease. 

I learned close to nothing because this disease is remarkably understudied. But I became convinced that a proper

epidemiologic study would discover that Sjögren’s syndrome is more common than current wisdom would have 

it, and that it probably has two forms — the rarer early-onset form and more common mature-onset form. This in

itself raises a number of important avenues for research. Then I asked myself, why haven’t these studies been done? 

I discovered that there is a lack of agreement on diagnostic criteria, and that this is the major stumbling block. As 

a psychiatric epidemiologist, I am aware of much worse debates about classification of psychiatric disorders which,

unlike Sjögren’s syndrome, do not have biological markers. However, we have a rich body of research on mental 

illness. In fact, the seven existing classification systems for Sjögren’s syndrome overlap significantly. The lack of 

a “gold standard” does not provide a sufficient explanation for the paucity of clinical research. Thus, the research 

aim of the S/MART program has as its fundamental goal the promotion of active interdisciplinary research aimed 

at understanding the etiology and course of this disease.

This brings me to the last letter, “T” for treatment. The letter “T” also stands for team, because Sjögren’s 

syndrome requires a team approach to treatment. We need both interdisciplinary and innovative treatments for 

the symptoms we endure and, most of all, we desire a cure. Every month, we patients spend a significant amount

of money on over-the-counter, non-reimbursable medicines, such as preservative-free eye drops, saliva substitutes
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(another misnomer) and other expensive dental products for dry mouth, sleep remedies, skin and vaginal lubricants, and the like. Many of us are on expensive prescription medications. We spend a lot of time each day treating

our symptoms and taking care of our mouths and eyes. In spite of this, the disease progresses and evolves. 

Currently, we can only treat symptoms as they arise because there is no treatment for the disease. 

As is obvious from the results of the effort, time, and money that NIH has allocated to other chronic diseases 

like AIDS and cancer, a cure will not be discovered overnight. Such effort will require a long-term commitment. 

We urge NIH to be at the forefront of research aimed at finding the cure for Sjögren’s syndrome. This can be

accomplished by bringing attention to the disease through NIH-sponsored conferences, requests for grant 

applications, adding experts on Sjögren’s syndrome to study sections, and working with pharmaceutical companies to develop the treatment component of the S/MART program.

To conclude, an estimated 2 to 4 million Americans are diagnosed with Sjögren’s syndrome, and 90 percent 

of them are women. It may well be that the true number of people with this progressive, debilitating disease is 

more than twice as high since it often takes years of seeking help before this diagnosis is made — even as a 

“rule-out” diagnosis. And, of course, the baby-boomer generation is now entering the at-risk age which will 

further increase the number of Sjögren’s patients. It is unacceptable that Sjögren’s syndrome is unrecognized 

and untreated. We emphatically urge NIH to develop a large-scale public education and research program — 

the Sjögren’s Medical Awareness, Research and Treatment program, or S/MART program. On behalf of the 

Sjögren’s Syndrome Foundation, I thank you for this opportunity to share these pressing concerns.

Sandra E. Brooks, M.D. Society of Gynecologic Oncologists

Dr. Vivian Pinn, Director, Office of Research on Women’s Health and Members of the Task Force on “Beyond

Hunt Valley: Research on Women’s Health for the 21st Century” — I am Sandra Brooks, M.D., Director, Division 

of Gynecologic Oncology at the University of Maryland School of Medicine. I am here today in my capacity as a

member of the Society of Gynecologic Oncologists (SGO). SGO is the only national medical specialty devoted 

to the study and treatment of women with reproductive organ cancers. These malignancies include cancers of 

the cervix, uterus, and ovary. 

I am extremely grateful for the opportunity to provide public witness testimony on behalf of SGO in 

support of increased emphasis and funding by the National Institutes of Health, and particularly the National 

Cancer Institute, for gynecologic cancer research.

There are three main gynecologic cancers: 1) cervical; 2) uterine; and 3) ovarian. The incidence of each 

of these cancers, and the women developing these diseases, are different reflecting the unique biologic characteristics of these diseases.
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A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Both the incidence and mortality for invasive cervical cancer have declined steadily in this country over the 

last three decades. Although only 14,500 women will develop cervical cancer in 1997, a third of them will die 

from this preventable disease. African-American women continue to experience an incidence rate that is nearly 

two times higher than the incidence rate for white women, and African-American women have a 56-percent, 

5-year survival rate as compared with a 70-percent survival rate for white women. 

Higher rates of cervical cancer are found in the American South as compared to other parts of the United

States. This reflects the tendency of the disease to disproportionately affect women in rural areas and women 

in lower socioeconomic classes. Cancer of the cervix is a preventable disease if women are regularly screened 

using the Pap smear.

Cancer of the uterine corpus or endometrium is the fourth most common cancer among U.S. women and 

is the most common invasive gynecologic cancer. An estimated 34,900 women will be diagnosed with uterine 

cancer in 1997. Fortunately, this cancer causes a limited number of deaths, as evidenced by a 5-year survival 

rate of 83 percent.

In 1997, the American Cancer Society estimates 26,800 new cases of ovarian cancer will be diagnosed 

in this country and 14,100 women will die from ovarian cancer this year. 

A relative survival rate of 90 percent can be achieved if ovarian cancer is diagnosed early, but unfortunately, 

70 percent of women with ovarian cancer are not detected until the cancer has reached an advanced stage, 

which has an 80-percent fatality rate. The risk of a women developing ovarian cancer is three to five times 

greater if her mother or her sisters had or have ovarian cancer. Women who have been diagnosed with breast 

cancer are 70 percent more likely to develop ovarian cancer, than the general population. 

Now, let me present some examples of current clinical research into the causes of and cures for gynecologic cancers:

In the area of cervical cancer research, the use of a lipopeptide vaccine has recently been approved for 

inves-tigation at the NCI. This clinical initiative targets the human Papilloma virus (HPV), which has been 

associated with over 90 percent of cervical cancers. The development of a therapeutic vaccine to treat advanced 

cervical cancer represents a novel and attractive alternative to current therapies. Also underway is the development of a prophylactic HPV vaccine with the potential to prevent the transmission of the HPV virus, and thus 

prevent cervical cancer.

Recently, in the area of ovarian cancer, the Gynecologic Oncology Group, one of NCI’s Cooperative 

Groups, demonstrated a 50-percent increase in median survival time among women with advanced ovarian 

cancer who were treated with the combination of paclitaxel-based chemotherapy compared to the standard

chemotherapy approach.
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Areas for Emphasis: Priorities to Succeed in Gynecologic Cancer Research

SGO has been very supportive of Congress doubling the NIH budget over the next 5 years. SGO has supported

this effort in the hope that additional priority would be placed on funding research that directly benefits the health 

of women, particularly women who are at risk for or are living with a gynecologic cancer.

Therefore, we would like to share with the Office of Research on Women’s Health some areas that need attention and hold great scientific promise, if appropriate funding and research efforts are directed towards these issues.

1. Gynecologic Oncologists as Primary Investigators in Independent Labs on the NCI Campus

The issue of gynecologic oncologists as principal investigators in the intramural program is quite timely, with

the building of the new clinical center and the emphasis on laboratory research during the fellowship training of 

a gynecologic oncologist. Increasing the number of principal investigators should increase the enrollment in screening and treatment trials in gynecologic cancer at the NIH clinical center. At present, there is not a fully trained 

and board eligible gynecologic oncologist with an independent lab on the NCI campus. 

SGO would urge the Office of Research on Women’s Health to work with Dr. Klausner, as we are, to ensure 

the creation of a Division of Gynecologic Oncology within the surgery branch of the intramural program at NCI. 

At a minimum, this division should include three independent labs where the primary investigators are fully

trained gynecologic oncologists. 

2. Increased Emphasis on Early Detection and Prevention of Ovarian Cancer

There is quite a difference in the survival rates of women who are diagnosed with cervical cancer and women

who are diagnosed with ovarian cancer. The reason for this is that we have a very good method for diagnosing 

cervical cancer, the Pap smear. We do not have a test such as this for the detection of ovarian cancer. SGO is 

advocating that additional federal resources be directed towards increasing clinical trials for ovarian cancer 

prevention and detection.

3. Specialized Program of Research Excellence (SPORE) for Ovarian Cancer

Last year, Congress encouraged NCI to provide funding for a SPORE that was targeted at ovarian cancer

research. A SPORE is a competitive grant mechanism to conduct translational research, where cancer centers 

are the applicants. 

Unfortunately, we have yet to see a request for application (RFA) be announced for a SPORE specifically 

for ovarian cancer, but we hope that after the cancer center evaluations are finished and released, this will occur.

We ask that the Office of Research on Women’s Health monitor this situation until a SPORE, targeted for ovarian

cancer, is funded by NCI.
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A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

4. The Need to Train More GYN Scientists

SGO asks that the Office of Research on Women’s Health take on a greater role in encouraging research 

directed at cancers of the reproductive system. One way to do this is to have the Office of Research on Women’s

Health dedicate a small portion of their FY 1998 budget to partner with NCI to administer a young investigator

program in gynecologic oncology research. Numerous grant mechanisms, like the R03s, the K08s, and the Clinical Associate Physician (CAP) program, already exist for the Office on Women’s Health to use as a model. SGO,

through its foundation, the Gynecologic Cancer Foundation, is working to partner with NCI to provide funding 

for young investigators to spend a year in the NCI intramural program, as part of their fellowship training.

Conclusion: Success Stories

Dr. Pinn, I greatly appreciate your time and attention to the need for additional resources for research being

conducted to find the causes and subsequently the cures for gynecologic cancers. I would like to close today with

some success stories. The success stories that I have had over the past several years are predominantly related to

those women which have been referred after a disease is identified by a Pap smear or a relatively short time after 

an episode of postmenopausal bleeding. Typically, these women will have early stage disease and are completely

curable. I have dozens of such women in my practice. These women undergo surgery for the most part and 

return to active and productive lives. 

There are relatively fewer success stories with ovarian cancer, however, a few are exceptions. In particular, 

the case of a 45-year-old woman who experienced pelvic complaints and was seen immediately by her gynecologist who ordered a sonogram. The sonogram revealed a complex mass, the tumor marker was elevated. 

The patient was then referred to me in consultation and she underwent a comprehensive staging procedure 

for ovarian cancer. Although we call her disease “early,” it had spread outside the ovary and to cells in the

abdomen. She subsequently was enrolled in a cooperative group trial containing platinum and taxol and 

has been free of disease since that time. This vignette illustrates the importance of the following:

• early detection;

• prompt diagnosis and treatment without unnecessary delay;

• streamlined evaluation;

• prompt subspecialty referral; and

• access to clinical trials.

It is experiences such as these, that drive my colleagues and me to seek new ways to prevent, to diagnosis, 

and to treat women at risk for or who have gynecologic cancers.

I and SGO look forward to working with you in the years ahead on behalf of the women of this country 

and their reproductive health. 
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Summary

Both the incidence and mortality for invasive cervical cancer have declined steadily in this country over the 

last three decades. Although only 14,500 women will develop cervical cancer in 1997, a third of them will die 

from this preventable disease. African-American women continue to experience an incidence rate that is nearly 

two times higher than the incidence rate for white women, and African-American women have a 56-percent, 

5-year survival rate as compared with a 70-percent survival rate for white women. 

Cancer of the uterine corpus or endometrium is the fourth most common cancer among U.S. women and 

is the most common invasive gynecologic cancer. An estimated 34,900 women will be diagnosed with uterine 

cancer in 1997. Fortunately, this cancer causes a limited number of deaths, as evidenced by a 5-year survival 

rate of 83 percent.

In 1997, the American Cancer Society estimates 26,800 new cases of ovarian cancer will be diagnosed in 

this country and 14,100 women will die from ovarian cancer this year. 

A relative survival rate of 90 percent can be achieved if ovarian cancer is diagnosed early, but unfortunately, 

70 percent of women with ovarian cancer are not detected until the cancer has reached an advanced stage, which

has an 80 percent fatality rate. The risk of a women developing ovarian cancer is three to five times greater if her

mother or her sisters had or have ovarian cancer. Women who have been diagnosed with breast cancer are 70 

percent more likely to develop ovarian cancer than the general population.

Given these statistics, SGO would like to share with the Office of Research on Women’s Health some 

areas that need attention and hold great scientific promise, if appropriate funding and research efforts are 

directed towards these issues.

SGO would urge the Office of Research on Women’s Health to work with Dr. Klausner, as we are, to ensure 

the creation of a Division of Gynecologic Oncology within the surgery branch of the intramural program at NCI. 

At a minimum, this division should include three independent labs, where the primary investigators are fully

trained gynecologic oncologists.

SGO is advocating that additional federal resources be directed towards increasing clinical trials for ovarian

cancer prevention and detection.

SGO asks that the Office of Research on Women’s Health take on a greater role in encouraging research 

directed at cancers of the reproductive system. One way to do this is to have the Office of Research on Women’s

Health dedicate a small portion of their FY 1998 budget to partner with NCI to administer a young investigator 

program in gynecologic oncology research.
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A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Ross C. Brownson, Ph.D. Saint Louis University School of Public Health

Increasing Physical Activity Among Minority Women in the United States

Decades of research indicate that physical activity is an important health-promoting and disease-preventing

behavior. Physical activity has been shown to lowers risks of heart disease, hypertension, diabetes mellitus, some

types of cancer, and osteoporosis.

One population that appears to be particularly vulnerable to hypokinetic-based risks is minority women. 

The limited information available indicates that minority women are less likely to be involved in physical activity 

than their white counterparts. In order to increase the prevalence of physical activity in this population, several

research areas need urgent attention.

• Assessments: Most of the assessments used to measure physical activity were developed and tested on 

white men. Extrapolating male test results to their female counterparts may result in serious limitations 

in data analysis. Research is needed to develop appropriate assessment tools and implementation plans.

• Identifying Barriers and Determinants: Women, particularly minority women, have very different life situations than men. Research is needed to identify specific barriers and determinants of physical activity if 

interventions with this population are to be successful.

• Community Interventions: Community interventions addressing the specific needs of women are necessary.

Policy changes that promote physical activity in communities may also help increase the prevalence of 

physical activity in women.

There is a shortage of well-known strategies for increasing physical activity in minority women. Development and implementation of these strategies will greatly benefit the health of our nation.

Alan P. Brownstein American Liver Foundation

The American Liver Foundation (ALF) is a national voluntary health organization dedicated to the prevention,

treatment, and cure for all liver diseases through research and education. ALF consists of 26 chapters nationwide

and provides information to 200,000 patients and families and over 70,000 physicians, including primary care

practitioners and liver specialists.

Certain liver diseases have a disproportionate impact on women. The most significant diseases in terms 

of mortality and morbidity are primary biliary cirrhosis (PBC), autoimmune hepatitis, and hepatitis B.
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Women’s Liver Diseases

Primary biliary cirrhosis (PBC) is a chronic liver disease that causes slow, progressive destruction of bile ducts 

in the liver. Women are affected ten times more frequently than men. It is estimated that as many as 100,000

women are living with PBC — most of whom are undiagnosed. This disease advances slowly, is chronic, and often

leads to life-threatening complications. Once cirrhosis develops, the only viable treatment is liver transplantation.

Autoimmune hepatitis is a progressive inflammation of the liver. It was first described in 1950 as a disease 

of young women, associated with increased gamma globulin in the blood and chronic hepatitis on liver biopsy. 

Seventy percent of all cases of autoimmune hepatitis are women. This disease is chronic and usually increases 

in severity over time resulting in possible liver failure. Liver transplantation is the only treatment of choice at 

the later stages of the illness.

Hepatitis B is a virus that causes the liver to become inflamed. It is estimated that 125,000 people contract 

this serious disease each year. Hepatitis B is responsible for 5,000 deaths annually, including approximately 1,500

from primary liver cancer and between 350 and 450 from fulminant hepatitis. Both men and women are at risk 

for contracting hepatitis B, however, women have the added risk of passing the virus on to their newborn children.

It is estimated that 22,000 pregnant women in the United States are infected each year with the hepatitis B virus,

an increase from the estimated 17,000 in 1991. Up to 90 percent of neonates of women who are carriers of hepatitis 

B become infected with the virus. Of the infants who develop chronic hepatitis B, one out of 12 will die prematurely

of cirrhosis or liver cancer before they are 40 years old.

The Future for Women’s Liver Diseases

The American Liver Foundation is dedicated to preventing, treating, and curing liver diseases through research

and education. ALF recognizes that there are some significant liver diseases that disproportionately affect women.

These diseases are problematical in that they are difficult to diagnose, often go untreated for long periods of time

because there are no signs of illness, and result in life-threatening outcomes. For a majority of the women infected

with any of these liver diseases the prognosis is poor. They look forward to debilitating symptoms as the diseases

progress, resulting in liver transplantation or death.

ALF recommends that a research strategy be developed that includes basic science and clinical trials so that 

we may gain a better understanding of PBC and autoimmune hepatitis.

• Research in the areas of drug trials, involving a large number of patients around the world, exploring 

the potential use of several medications to lessen the symptoms produced by these diseases and the 

control of liver damage.

• Research into the causes and treatment for liver diseases affecting women.

ALF recommends education be conducted with both the public and professionals — education to improve

women’s awareness of the physiological functioning of the liver and the role it plays in many of the functions of 
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the body. The is of particular importance for women of childbearing age who may have been exposed to hepatitis 

B virus, because a highly effective treatment is available for newborns.

• Educate women as to the risks they face as women when their livers are threatened with any one of these

diseases. Through increased awareness, women may be able to help advise their primary physicians as to

signs and symptoms that could lead to earlier diagnoses and possibly preventative treatments to forestall 

the complications of severe liver damage and mortality.

• Educate primary care physicians about the signs of these diseases so as to lead to earlier diagnosis and

improved outcomes for women.

In closing, ALF commends the Office of Research on Women’s Health for their concern and efforts regarding

the health and well being of women. ALF recommends that more research into the causes and treatment of these

diseases be conducted. Further, more education into the prevention of liver disease and awareness of the signs 

and symptoms should be done with the general public and in the professional medical community. These diseases

produce debilitating symptoms and the outcome is usually death or liver transplantation. Your office offers a central

repository for the concerns about women’s health issues. Hopefully, more can be done to alleviate the suffering

endured by women affected by these diseases.

Jacquelyn Campbell, Ph.D., R.N., F.A.A.N. The Johns Hopkins University School of Nursing

The Effects of Intimate-partner Battering on Women’s Physical and Mental Health

Battering is defined here as repeated physical and/or sexual assault by an intimate partner within a context 

of coercive control (Campbell and Humphreys, 1993). The emotional abuse that is almost always part of the 

coercive control also has serious psychological consequences according to women themselves, but the actual 

effects on women’s health have seldom been measured separately. In the most recent national population-based

prevalence study of battering, 8 percent of women said they were currently being physically abused (Plichta, 1996).

Obstetrical and Gynecological Health Correlates

The forced-sex aspect of battering is directly associated with significant health problems with approximately 

40 to 45 percent of all battered women being forced into sex by their male partners (Campbell, 1989). Relationship

sexual abuse probably results in increased pelvic inflammatory disease; heightened risk of sexually transmitted diseases including HIV/AIDS; vaginal and anal tearing; bladder infections; sexual dysfunction; pelvic pain; urinary

tract infections; unexplained bleeding; unintended pregnancy; and other genital-urinary-related health problems 

documented for battered women in several population-based, shelter and health care setting studies (Bergman 

and Brismar, 1991; Campbell and Afford, 1989; Campbell, Pugh, Campbell, and Visscher, 1995; Chapman, 

1989; Eby, et al., 1996; IOM, 1994; Plichta, 1996; Sauncers, Hamberger, and Hovey, 1993).
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Pregnancy can be a direct result of forced relationship sex and abuse during pregnancy, a continuation of 

the general battering. The body of research on battering during pregnancy show a prevalence of abuse during 

the current pregnancy ranging from 2 to 17 percent with prevalence of abuse prior to pregnancy (within the 

past year) ranging from to 3 to 9 percent (Gazmararian, et al., 1996). The highest prevalence in a large ethnically heterogeneous sample was found by a study that used the regular prenatal care nurse for a face-to-face 

oral inquiry at each prenatal care visit using the four-question Abuse Assessment Screen (McFarlane, Parker,

Soeken, and Bullock, 1992), and colleagues (1994) found an increased prevalence (19 versus 10 percent) 

of abuse during the postpartum period also alerting us to the necessity of considering abuse beginning or 

resuming after childbirth as well as during pregnancy. Health-related correlates of abuse during pregnancy 

included substance abuse, smoking, less than optimal weight gain, and eating an unhealthy diet (Campbell, 

et al., 1992; McFarlane, Parker, and Soeken, 1996). In terms of pregnancy outcomes, there are now at least 

three studies that have documented an association of low birthweight with abuse during pregnancy, even controlling for other risk factors (Bullock and McFarlane, 1989; Parker, McFarlane, and Soeken, 1994; lzchei, et al.,

1991), although other studies do not show the same association (O’Campo, et al., 1994; Amaro, et al., 1990).

Other Physical Health Problems

Increased health problems and health care seeking of physically battered nonpregnancy women are also 

well documented. In two population-based national surveys, women physically abused by a spouse or live-in 

partner were significantly more likely than other women to define their health as fair or poor (Gelles and Straus,

1990; Plichta, 1996). Abused women were also more likely to say they had needed medical care but did not get 

it (Plichta, 1996), and severely battered women had almost twice the number of days in bed due to illness then

other women (Gelles and Straus, 1990). In the Bowker survey of self-identified battered women who had successfully ended the violence, the majority of women had sought help from medical professionals, a higher proportion

than from other sources of help (Brendtro and Bowker, 1989). 

Injury is the most obvious health effect of battering, and between 15 to 30 percent of women in emergency

rooms (ER) report that they are currently in a violent relationship (Abbot, et al., 1996; Dearwater, et al., 1996;

Goldberg and Tomlanovich, 1985; McLeer and Anwar, 1989). Domestic violence is a major cause of both injury

and noninjury visits to the ER by women. Chronic pain was found to be the most frequent reason for visiting the 

ER in one sample (Goldberg and Tomlanovich, 1985), and is a common symptom of battered women in other 

settings (McCauley, et al., 1995). Although frequently described as somatization, this pain, as well as nonspecific

neurological symptoms frequently documented in battered women, may be the result of aid, misdiagnosed, or

never treated injuries. Obviously, the most severe health consequence of intimate-partner violence is homicide,

causing more than half the homicides of women in the United States each year (Browne and Flanagan, 1991).

In the few recent studies of primary care settings, the percentage of abused women, from self report (rather

than record review), has ranged between 5.5 to 25 percent (Gin, et al., 1991; McCauley, et al., 1995; Rath, Jarratt,

and Leonardson, 1989; Saunders, Hemberger, and Hovey, 1993). Rath, Jarratt, and Leonardson (1989) found 
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that, in the HMO studied, not only the battered women but also their children used health services 6 to 8 times

more often than controls.

Other symptoms and conditions shown in controlled investigations to be associated with physical violence

from intimate partners may be more related to the results — stress, including chronic irritable bowel syndrome,

digestive problems, eating disorders, and other stress-related physical symptoms (Bergman and Brisman, 1991;

Breslau, Davis, Andreski, and Peterson, 1991; Campbell, 1989; Druckman, et al., 1992; Kerouac, Taggart, Lescop,

and Fortin, 1986; McCauley, et al., 1995; Stark and Flitcratt, 1985). Descriptive studies suggest that other physical conditions such as hypertension may also be related to abuse (McCauley, et al., 1996) and suggested in others

(e.g., Kerouc, et al., 1986; Rodriguez, 1989). Although the suppression of the immune system from chronic stress

has been investigated in other populations, the role of stress in the etiology of the frequent communicable diseases 

of battered women and their children (Kerouac, et al., 1986) has not been investigated.

Mental Health Consequences

Mental health sequalae to abuse are significant and prompt women to seek health care services as frequently 

as for physical health problems (Gleason, 1993; Saunders, Hamberger, and Hovey, 1993). The primary mental

health response of women to being battered in an ongoing intimate relationship is depression, with prevalence

ranging from10.2 percent (Weisman, et al., 1991) to 21.3 percent (Kessler, et al., 1994) to 31.9 percent when also

including anxiety diagnoses (Plichta, 1996) in general population studies. In controlled studies from a variety of

settings, battered women are consistently found to have more depressive symptoms and significantly higher diagnoses of major depression than other women (Bland and Orn, 1986; Gleason, 1993; Jaffe, Wolfe, and Wilson,

1986; McCauie, et al., 1996; Ratner, 1993). Even so, the need to assess for, and intervene if necessary, domestic 

violence, as well as depression, has seldom been recognized (Campbell, Kub, and Rose, 1996).

Higher rates (31 to 84 percent) of posttraumatic stress disorder (PTSD) have also been documented in battered women in shelters than in other women (Astin, Lawrence, and Foy, 1993; Gleason, 1993; Kemp, et al., 

1995; Saunders, 1994; Woods and Campbell, 1991). The prevalence of PTSD in battered women in the general

population (1.7 to 12.3 percent) is also higher than for nonabused women (Davidson, et al., 1991; Kessler, et al.,

1995; Norris, 1992; Resnick, et al., 1993). Battered women would generally not complain of PTSO per se to a

health care provider, but rather of sleep disorders or stress (McCauley, et al., 1995). Thus, there is substantial 

probability of misdiagnosis or lack of diagnosis of PTSD by health care providers.

Substance abuse is frequently seen as part of a trauma response, and abuse of both alcohol and illicit drugs 

has been found as a substantiated correlate of abuse during pregnancy in all of the studies where it was measured, 

as well as in several studies of clinical and shelter samples of battered women (Amaro, et al., 199?; Campbell, 

et al., 1992; Bergman and Brismar, 1992; McCauley, et al., 1995; McFahane, et al., 1994). Although Ratner (1993)

found a substantial association of alcohol abuse and battering in a recent Canadian random-sample survey, Plichta

(1996) did not find an association between intimate-partner violence and alcohol use (abuse not measured) in the

United States. Plichta (1996) did find an association between intimate-partner violence and alcohol use (abuse not
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tranquilizer) use. Clearly substance abuse treatment programs for women need to address domestic violence, 

as are shelter programs becoming more inclusive of substance-abusing battered women in their interventions.

Conclusions

Clearly intimate-partner violence is a significant health problem that interfaces with many of the other most

important women’s health problems. Funding for violence-against-women research is currently concentrated within

CDC and NIH, but neither of these agencies systematically investigate the interface of intimate-partner abuse and

other major women’s health problems. Therefore, other institutes of NIH need to have this area of investigation

considered as a significant issue for research.

Molly S. Chatterjee, M.D. Meharry Medical College

The word “diversity” is heard everywhere in the community. In reality, abuse of faculty, discrimination, and

harassment of minority women are still rampant in academic medicine. The purpose of this testimony is to voice

the concern of American women, particularly of Asian and Indian origin. It is felt that American women of East

Indian and other ethnic origin are not represented in the hierarchy in many important decisionmaking bodies.

Look around in the advisory panel of ORWH. Check NIH, AAMC, and our nation’s 125 medical schools. AMA

News of November 10, 1997 mentions formation of a minority consortium. NMA, NHMA, and Native Americans 

are included in the partnership; but no mention is made about the Asian or East Indian groups, among others.

After serving the country for more than a few decades, these women are advised that there is no discrimination and if it exists “Discrimination is hard to prove.” They are advised to leave, and move on to another job.

Legal battle becomes expensive, time consuming, and emotionally draining. In academic medicine you can be 

fired without a cause! The universities will say, “We do not like her!” Again, the question is asked, “Are you facing sexual harassment?” No, these senior women are facing “gender harassment.” This process of harassment 

is usually adopted by male middle managers that are unfair, egotistic, self-centered, incompetent, and arrogant, 

and are blessed by administration. Harassment continues to interfere with the education and career success 

of these women in medicine. Supervisors in academic medicine have seemingly taken a ploy for “genocide” 

of American women of other ethnic groups, particularly of Indian origin.

Statistics

Women now constitute about 42 percent of total enrollment in medical schools. The proportion of women in

residency programs has grown to 34 percent. The proportion of full-time women faculty had grown to 26 percent 

in 1996. Of the 21,434 women faculty in 1996, just fewer than 10 percent were full professors and 19 percent

were associate professors. For men, these proportions were 31 and 25 percent, respectively. Approximately 150

women currently chair medical school academic departments. About 308 women are division chiefs. Seven women 
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are deans of medical schools and five are CEOs. AAMC recognizes that women continue to face extra challenges 

in progressing in academic medicine. About 10 percent of women faculty are of Asian descent. About 2.6 percent are female Asian M.D.s. Female Asians represent only 0.9 percent of all professors. Only 8 percent of Asian

females are tenured.

Problems

• At LSU in New Orleans, Dr. Rao, a woman faculty member, pointed out the salary difference of female 

scientists in academic medicine during the ORWH public testimony session.

• Faculty member in the Chicago area has been terminated; promotion and tenure has been denied.

• History has been repeated in other universities in the Southwest, West, Northeast, Midwest, and elsewhere.

• American women of East Indian origin are excluded from leadership roles; they are harassed due to their

national origin, age, and gender. They remain underrepresented. Their voices need to be heard and that 

is the purpose of this presentation.

Many times, these women are bypassed and not offered leadership positions such as “chairman of the department.” The positions of division director is taken away, without cause. They are not provided with support, and 

a concerted effort is made for them to fail. Junior faculties, without adequate experience, are offered supervisory

positions to torment and torture these women. These women are asked to do “scut” work, given responsibility 

without authority, they are deprived of practice earnings by unfair allocation, suppression of facts, and pressure 

tactics by group effort. Emotional trauma often leads to physical problems, broken relationships, difficulty in 

marriage, financial difficulty, and lack of a proper job. Senior nonminority women in academic medicine advise

“speak slow and low, do not be abrasive.” They do not understand the verbal and emotional abuse these women

face. Their behavior is labeled as “coercive,” “angry,” “vociferous resistance,” “coming on too strong to be effective,”

“not a team player,” and “not following the group decision.” Similar behavior from men, other things being equal, 

is considered perfectly acceptable. The colleagues, personnel office, and grants office, many times harass program

directors of funded grants. Emotional trauma is aggravated by the insubordination of secretarial and administrative staff. The personnel in collusion with department chairs interfere with performance on a daily basis of these 

academic, hard-working women. Interfering with termination of insubordinate, incompetent employees hampers 

managerial skills. Their seniority is ignored. At every step concerted effort is made to frustrate them to make 

them quit their job. In the pursuit of their life-long dream, these women are often heartbroken without any 

peer support. Often times the family is neglected; children are inadequately supervised. These women faculty

invariably experience professional isolation. They are attacked in open for their “accent” and sometimes age. 

Solutions

• As recommended by AAMC, Deans need to develop departmental strategies to enhance the professional

development of women and underrepresented minority faculty.
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• To serve the diverse population of the United States, American women of Indian origin should have 

access to mentors and leadership programs. They need to be groomed for leadership positions and 

need to be represented at every possible decisionmaking committee.

Other suggestions:

• Read books such as Hardball for Men,

• Be a feminist,

• Read financial statements,

• Subscribe to the Wall Street Journal,

• Avoid wounded behavior,

• Develop a thick skin,

• Shine in multiple arenas,

• Be a women’s advocate,

• Dream big,

• Indulge in self advocacy,

• Challenge the boss,

• Dance with the bear until the bear gets tired,

• Perform at their best,

• Develop a standard to select academic chairs,

• Acquire managerial skills,

• Get a mentor,

• Network, negotiate,

• Stop harassment by joining forces — if necessary by class action lawsuits, and

• Improve the educational and professional environment for women.

In conclusion, as academic medicine moves on to the next millennium, the only choice this country has 

is to make the leadership diverse. This can only be achieved by recognition; reward; and ethical, professional, 
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and fair treatment of all underrepresented minority women faculty. Time has come to understand the need 

to include American women of East Indian origin in leadership positions of academic medicine. I hope this 

public testimony will challenge the stereotype and improve the academic medicine environment.

Bente E. Cooney, M.S.W. National Osteoporosis Foundation

I am Bente Cooney, Director of Public Policy at the National Osteoporosis Foundation (NOF), the only 

national nonprofit health organization solely devoted to reducing the widespread incidence of osteoporosis. 

When I testified before you in September 1996, I described the human and economic toll of osteoporosis in

this country. Since then, a new study published in the Journal of Bone and Mineral Research estimated the medical

expenditures for the treatment of the 1.5 million annual osteoporosis fractures considerably higher than previously

believed. Earlier estimates of $10 billion overlooked the expenditures associated with treating non-hip fractures,

minority populations, or men. When expenditures were calculated for 1995 based on the more inclusive criteria,

costs rose to $13.8 billion. This study presumes osteoporotic fractures caused almost one-half million hospitalizations in 1995, along with 2.5 million visits to physicians, and about 180,000 nursing home admissions. 

Also, more people may be affected by osteoporosis than I reported last year. A report authored by NOF and

based on the National Health and Nutrition Examination Survey (NHANES) data, estimates that in 1996, 23 million women over the age of 50 either have osteoporosis or are at risk of developing the disease due to low bone

mass. This report includes all U.S. women, whereas earlier reports were limited to white postmenopausal women. 

The same report estimates that by the year 2015, the number of women affected will increase to 35 million —

largely due to the aging of the population. We must join forces to prevent this frightening statistic from becoming 

a reality. 

Inspired by your efforts to identify a specific women’s health research agenda, NOF asked the Research Committee of our Scientific Advisory Board to identify key areas for osteoporosis research. The Committee, headed 

by Dr. Robert Recker of Creighton University, has not yet finalized its report, but what follows is drawn from 

the initial results of that committee’s work.

Human Research

The first and foremost priority is an overarching recommendation to increase clinical research. We have major

gaps in our patient-oriented research. We are simply not making the necessary translation from basic research to 

benefits available to patients. Figuring out the mechanisms of disease is very important, but once we solve the 

puzzle, we tend to put it aside and move on to new challenges. The solution rarely gets transmitted to help the

patient. This is in part because of a lack of support for this type of work, and in part because it is difficult to do.

For example, there is concern that human gene or genetics research, which mistakenly has been labeled as “clinical
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research,” may produce answers to questions, but not solutions to real patient problems. Finding the gene, 

or genes, responsible for a disease is simply not enough. 

These are some examples of needed patient-oriented research:

• We need human intervention studies and human experimentation to resolve unanswered clinical questions 

regarding vitamin D. Our vitamin D research has been remarkable, however, it has stopped short of 

translation into improved public health. The unanswered questions regarding vitamin D are as follows:

What is the optimum vitamin D status? Will optimizing vitamin D status reduce the fracture burden? 

How much vitamin D do typical adults normally produce in their own skin every day — summer and 

winter? What is the interaction between dietary calcium and vitamin D status? Finally, we need an inexpensive, reliable, and effective vitamin D preparation. Physicians cannot practice nutritional medicine 

without this kind of information.

• Fluoride is an another example of our lack of knowledge. There is good reason to believe that, in an appropriate

dosage form and regimen, and with appropriate co-therapy, fluoride could be extremely useful, both in the

management of patients who already have osteoporosis and in the rebuilding of bone mass of individuals

who are osteopenic but have not yet fractured. But as one scientist noted, fluoride has three drawbacks: 

it is old, it is cheap, and it is nonpatentable. Because of the private enterprise system in the United States,

nonpatentable preparations will never elicit the necessary investment by the pharmaceutical industry. 

We do not know what the right dosage is; we do not know the right dosage form; we do not know how 

to monitor therapy in terms of blood levels; and we do not know what blood levels have to be achieved 

in order to be effective. Thus, a potentially promising agent languishes. 

• We need human research on the incremental effectiveness and safety of combination therapies. These combinations include simultaneous administration of calcium, vitamin D, male and female hormones, and 

bisphosphonates or other pharmaceutical agents.

• We need psychosocial and quality-of-life studies. Osteoporosis among older adults often involves vertebral 

fractures which are responsible for substantial pain, deformity, compromised function, and multiple social

and psychological impairments. Deformity can wreck havoc with self esteem and mastery, but it can also

cause pragmatic problems such as finding clothes. Depression appears to be a major problem in women

with this disease. We need a better understanding the social and psychological variables of these different

quality-of-life factors. 

• We need research on behavioral issues surrounding the widespread lack of compliance with well-known preventive

measures in osteoporosis. Why, for instance, do the majority of people who could benefit from estrogen

replacement not take advantage of it? Why does calcium intake remain low after many years of research 

and education showing that increases in calcium intake are safe and effective in preventing osteoporotic

fractures? Why is our elderly population so sedentary and our children getting less exercise when considerable research shows benefits of physical fitness among the elderly and among children?
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• We need research on methods of rehabilitation in the frail elderly who have suffered fractures. There has been 

little research on how to engage patients in physical activity when they are suffering painful fractures, 

muscle weakness, and reduced endurance. We need research on methods of controlling pain in patients 

with osteoporosis. We need research on the origin of pain in patients with osteoporosis, particularly 

back pain.

• It has been assumed, based on the genetics, that African-American women are not susceptible to osteoporosis.

Although it may be true that young adults have a higher bone density on average compared to Caucasians, it is not certain that the same could be said for women and men over the age of 50 years. Indeed, 

one researcher’s experience is that African Americans are prone to develop osteoporosis as a result of 

low lifetime intake of calcium and vitamin D. Their skin pigmentation may decrease the capacity of the 

skin to produce vitamin D, making this population more prone to vitamin D deficiency and secondary

hyperparathyroidism. Studies should be conducted in minorities to determine the extent of vitamin D 

deficiency and osteoporosis.

• Exercise for the prevention of osteoporosis is an area that needs further exploration. We lack good controlled 

clinical trials which evaluate the benefits of exercise on osteoporotic fracture outcome. Almost all studies

examine muscle strength and bone density responses. Falling frequency is starting to be evaluated. However, the ultimate effect on fracture incidence has not yet been evaluated. 

• Exercise for bone health across the life span is an exciting concept. One researcher describes the needs 

as follows:

– Youth to 25 Build bone mass and muscle strength.

– Ages 25–45 Maintain bone mass and strength; build flexibility to avoid injury.

– Ages 45–70 Maintain bone mass and strength; maintain flexibility; promote balance-building 

activities; check for sight and hearing loss; promote weight bearing.

– Ages 70+ Build balance, agility, and strength; check vision, hearing, shoe apparel, and home 

environment to avoid falls and injury.

• Studies of secondary prevention would be most useful in osteoporosis. Once an osteoporotic fracture has 

occurred in a person the chances are greatly increased that another one will occur in the future. Many 

people with known fragility fractures go untreated. We need research into the reasons for this and how 

we might target the population with current fractures for prevention of future fractures. 

• We need human epidemiologic research including research into the reasons for secular changes in fracture rates 

and difference in fracture incidence between countries.

• The role of androgens in osteoporosis prevention and treatment in women needs to be addressed.
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• Does skeletal osteopenia during the growth spurt contribute to the rising incidence of bone fragility fractures 

during puberty? Can it be modified by the environment which would lead to the reduction in incidence 

of fractures?

• Factors that affect attainment of peak bone mass in young women need to be looked at. Perhaps this question 

and more will be answered by the joint project between NIAMS and NICHD on osteoporosis prevention 

in children, for which an RFA was issued in June 1997.

• Eating disorders and exercise-induced amenorrhea in young women need additional attention by researchers.

Basic Research

• The number one priority should be to investigate the biology of bone adaptation to mechanical loading. The 

most important research to be done in this area is on the set point mechanism which senses loading 

and responds appropriately to control the skeletal adaptive response.

• We need research on the inefficient repair of bone tissue micro damage. At least one of the functions of 

the bone remodeling system is repair of micro damage. We do not understand how micro damage is 

detected and how it is repaired. Inefficient repair of micro damage is almost certainly a contributing 

factor in excess skeletal fragility.

• We need research on the interaction between estrogens and cytokines, particularly to followup the concepts 

suggested by animal data. We need research on the mechanism of estrogen action on bone. We need 

to identify and isolate osteoclast precursor cells. 

• We need research on the molecular basis for the cell-to-cell interaction that governs bone resorption and 

osteoblast activity in vivo.

• We need research on the cellular mechanism of the anabolic affects of parathyroid hormone, prosta-glandins, 

and fluoride on bone. These are all anabolic agents and the search for effective anabolic treatment of 

osteoporosis should start with these known agents.

• We need research on transcriptional control of osteoblast differentiation.

• We need research on the effect of cell matrix interaction in osteoblast and osteoclast proliferation and 

differentiation. 

• Genetic studies are needed in osteoporosis. Between 50 and 90 percent of variation of peak bone mass 

is inherited. Thus, we need to discover the genes associated with regulation of peak bone mass and 

to determine their function so that this function might be mimicked by pharmaceutical interventions. 

We also need studies of the genetic linkage to rates of bone loss. The genetic studies are large, expensive, 
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and difficult. The best approach would be a cooperative effort including several osteoporosis centers 

and the National Institutes of Health, as well as industry. 

• Research is needed to understand the recently discovered relationships between important diseases of postmenopausal women: osteoporosis and breast cancer, depression, rheumatoid arthritis, stroke, and coronary heart 

disease. Do these associations provide clues to etiology and preventive medicine? 

In summary, the above presents just a partial listing of gaps in our knowledge about osteoporosis. Because

osteoporosis is such a young disease in terms of research focus and public attention, the research needs are great 

on multiple fronts. While the major goals of osteoporosis research may be to uncover the molecular and cell biology 

of bone and the factors that regulate bone cell activity to identify the genetic and environmental risk factors that

contribute to bone loss; there are numerous pressing patient-related issues that scream for answers. Sufficient methods for prevention, diagnosis, and treatment of osteoporosis still have not been identified. A comprehensive national

strategy to address osteoporosis, including a coordinated program of basic, clinical, and behavioral research, is

urgently needed before the baby-boom generation reaches the age of osteoporotic fractures. If we fail to do so, 

this disease will not only bankrupt our health care system, but also the lives of millions of women and men.

Zara Cooper, B.S. Self, Mount Sinai School of Medicine

Background

Genetic technology is moving forward at an increasingly rapid pace. At this time, scientists have identified more

than 4,000 diseases as having a genetic component; and as our knowledge of genetics expands, we will continue to

place it into the broader context of conditions that are multifactorial in nature. Cancer, heart disease, and diabetes

all have a genetic component, and interest about a genetic link to mental illnesses mounts daily. Genetic diseases

take an incredible toll on society — 10 percent of adults and 30 percent of children in hospitals have genetically

related conditions. Genetic conditions have a significant impact on reproductive difficulties, and account for half 

of all spontaneous abortions, 5 percent of stillbirths, and are the leading cause of congenital malformations.

The center of this rapid advancement in genetic technology is the Human Genome Project — a global research

effort, led by the National Institutes of Health and the Department of Energy, to identify the estimated 100,000

genes in the human genome. It is estimated that the project, now in its seventh year, will take 15 years and $3 

billion to complete. New genetic discoveries are accompanied by the promise to identify their carriers and prevent

resulting ailments. As technology moves forward, it is likely that costs associated with genetic testing will decrease

and access to care will increase. Such discoveries promise medicine the ability to treat conditions pre-symptomatically, potentially eradicating some genetic conditions altogether. Prenatal genetic testing is becoming universal. In

fact, the Office of Disease Prevention and Health Promotion’s preeminent initiative, Healthy People 2000, has set 

a goal that 90 percent of women enrolled in prenatal care will be offered screening and counseling on prenatal
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detection of fetal abnormalities by 2000. In April of this year, the National Institutes of Health’s Consensus 

Development Conference on Carrier Testing for Cystic Fibrosis (CF) recommended that providers recommend 

CF carrier testing for all pregnant women. This recommendation will likely make such testing the legal standard 

of care, and only gives further urgency to the need for discussion and consensus building around the topic of 

prenatal genetic testing.

However, progress does not come without a price. Population testing may send the message, implicitly or

explicitly, that the value of a human life should be based on the presence or absence of a disease such as cystic

fibrosis. This paper will address some key issues surrounding prenatal genetic testing, explore the health policy

implications of this service, and recommend areas requiring further exploration. 

Prenatal Diagnosis

Prenatal diagnosis has a history dating back to the 1950s. However, recent advances in genetic technology,

increasing numbers of women having their first child after 35, and growing public awareness about the potential 

of genetic technology has brought issues surrounding prenatal testing to the forefront of the policy, medico-legal,

and ethical agendas.

Prenatal genetic testing, which informs patients at risk if they are carrying an affected fetus, is now common

during pregnancy. Indications for prenatal testing follow: (1) advanced maternal age (often 35 years at expected

date of confinement); (2) previous child with a de novo chromosome abnormality; (3) presence of a structural

chromosome abnormality in one of the parents; (4) family history of some genetic defect that may be diagnosed 

or ruled out by biochemical or DNA analysis; (5) family history of an X-linked disorder for which there is no 

specific prenatal diagnostic test (can use fetal sex determination to determine whether or not to terminate the 

pregnancy); and (6) risk of a neural tube defect.

Although it may appear that few pregnancies would be recommended for prenatal testing, almost all pregnant

women are, or will be, affected by this technology. Couples who seek assurance that their baby won’t have a genetic

complication may seek genetic testing even if they don’t fall into one of the above categories. Additionally, it was

reported in one study that 43.3 percent of patients referred for amniocentesis, exclusively for advanced maternal

age, had additional genetic risks or significant concerns regarding one or more genetic or congenital disorders.

Genetic Counseling

Medical genetics requires counseling skills exceeding the demands of everyday medical practice. This is largely

due to the complexity of obtaining informed consent for genetic testing. Reasons for this have been characterized 

as follows: (1) genetic testing involves a family instead of a single individual; (2) it has unique meaning because 

in our culture genes signify absolute predictive power; and (3) genetics is probable in nature and physicians and

patients both have difficulty working in these terms.

The goal of genetic counseling is to provide counselees with as much information as possible so that they

understand the implications and options regarding the genetic disorder in question. Genetic counselors have 
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graduate training and are certified by the American Board of Genetic Counselors, and work as a member of 

a health care team to educate and support families seeking genetic services. 

Unlike many other professionals, genetic counselors are trained to be nondirective. This distinction is 

very important in the context of genetic counseling because of the complexity of ethical and moral issues at 

stake in family planning, reproductive services, and the possibilities of pregnancy termination. Respect for an 

individual’s/couples beliefs and values concerning tests undertaken for assisting reproductive decisions, is of 

paramount importance and can best be maintained by a nondirective stance. However, there is skepticism about 

the applicability of nondirectiveness because body language and overall presentation of information can have 

a greater overall impact on patient perceptions than what is said. 

Informed Consent and Cultural Sensitivity

Geller, et al., suggest that for informed consent to be adequate, medical professionals must be sensitive to 

the language, educational, and religious differences that exist among their patients, and between their patients 

and themselves. Furthermore, they suggest that obstacles to medical professionals providing genetic services 

with informed consent include: (1) lack of competency regarding genetics; (2) difficulty in providing information based on probabilities; (3) cynicism about informed consent; and (4) proclivity towards directiveness.

Patient autonomy is not a value shared equally by all cultures. European Americans and African Americans 

are more likely to believe that doctors should always be forthcoming with bad news than are Asian Americans 

and Hispanic Americans. In some cultures, disclosure requirements, signed forms, and individual decisionmaking may conflict with norms and expectations. Physicians and other counselors must conform to these cultural

expectations in order to serve their patients well. Knowledge about health practices, values, and communication

styles in other cultures is crucial for effective genetic counseling to occur in a pluralistic society.

Probability and abstract thinking are also key components of how genetic information is understood. Wertz, 

et al. found that pre-counseling interpretation of risk precedes all other variables when predicting post-counseling

interpretation of risks. Counselors need to know how interpretation of risk varies by culture and ethnicity. This

need is fairly acute when one considers that it is often the patient’s ethnicity that places them in an at-risk group.

Research is needed in this area to give providers guidance about the components of risk assessment within a cultural context. It should be noted that patients and providers do not always agree about the definition of risk.

Patients seem to consider moderate, those numerical risks that counselors find to be high. Ultimately, however, 

the client thinks in terms of binary risk; the baby is effected or it isn’t. Counselors must remain cognizant of

how their presentation may influence their counselees’ interpretation of risk.

Access to health care is a significant problem for many women of color, those having low income, and immigrants due to language differences. Other barriers include geography, poverty, and lack of knowledge about genetic

services. Delayed access to prenatal services may cause women to miss the testing window, or prevent them from 

having the necessary time to interpret and internalize information regarding testing. Not surprisingly, it has been

found that Latinas and African Americans are less likely to undergo prenatal diagnosis. This difference between 
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the races could have significant consequences given that black women (76.9) have higher fertility rates than 

white (64.9) or Asian (66.8) women, and are less likely to receive early prenatal care.

Even when women do have access to diagnostic tests, they may not have access to the necessary counseling

because of a dearth of genetic counselors outside of major academic centers. Because genetics is grounded in 

probability, patients must realize that their risk, or lack of risk, is rarely absolute. Clearly, a test result is invaluable without subsequent interpretation and discussion. Additional work should be done in the area of informatics 

to determine the best way to communicate genetic information and risk. Since one-on-one counseling is not 

possible in all cases, alternate communications vehicles, such as computers, should be investigated. Research 

efforts are currently underway.

Provider Assessment

Providers enter any relationship with their own values, such as ability to take risks, beliefs regarding termination of pregnancy, and willingness to accept and cope with illness. The lifelong implications of genetic decisions

demand that counselees make decisions within the framework of their own values.

In 1996, the National Society of Genetic Counselors reported that of the nation’s approximately 1,600 counselors, 94.9 percent were women. This is particularly significant because gender is the single greatest determining

factor in how genetic counselors work with their patients. Women tend to be less directive and site respect for

patient autonomy as their reason for withholding an opinion. Gender will also play a significant role in how

patients are counseled by various medical specialists. According to the Council on Graduate Medical Education’s

(COGME) Fifth Report, Women in Graduate Medical Training, 59.6 percent of pediatric residents and 53.0 percent 

of obstetrics gynecology residents were women, whereas only 31.3 and 39 percent of internal medicine and family

practice residents were women, respectively. Taken to its logical conclusion, patients of family prac-titioners and

internists would be more likely to receive directive counseling.

Holtzman has reported that non-geneticist physicians were more likely to be directive in counseling than

geneticists were and that family physicians were the least likely to be nondirective. Family physicians are often 

the gatekeeper to specialist care and play a vital role in many managed care programs. Thus, we must pay particular attention to the role of the family physician in genetic services provision, and ensure that education of family

physicians includes the norms and recommendations set forth by recognized authorities in genetic care. The same

survey found that pediatricians and obstetrician/gynecologists were four times more likely than geneticists to give

patients their opinion when confronted with the same counseling situation.

Holtzman also found that there is a substantial knowledge gap even among physician providers of genetic 

services. Additionally, only 55.7 percent of obstetrician/gynecologists and 78.3 percent of pediatricians knew 

that there was virtually no chance of a couple having a child with cystic fibrosis if only one parent was a carrier. 

Furthermore, only 39.4 percent of obstetrician/gynecologists and 48.8 percent of pediatricians were able to 

calculate the chance of a couple, without a family history, having a child with cystic fibrosis. If our physicians 
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are illiterate in the basic language of modern genetics, how can we expect them to properly educate patients 

and future physicians?

Prenatal counseling will almost inevitably raise the issue of abortion and contraception. It has been reported 

that physicians who are directive in counseling are more likely to attend religious services than those who are 

not. Furthermore, those offering opinions about abortion were 3.5 times more likely to attend religious services 

and 2.5 times more likely to be internists or family practitioners. It is not appropriate for physicians to counsel

patients based on their own values.

Finally, we must acknowledge the need for more minority genetic counselors. According to the National 

Society of Genetic Counselors, over 92 percent of counselors are Caucasian. In 1992, the COGME reported that

increasing the numbers of underrepresented minority physicians was “vital” to improving access to medical care 

for underserved minorities. They reasoned that minority physicians are more likely to work in underserved areas,

minimize cultural and language barriers to care, and serve an important role as community leaders. According to 

the Council, “Cultural and language differences are best addressed by physicians from the respective minority

group.” This applies to all providers of health care, and as such there is a dearth in the number of genetic 

counselors who can adequately meet the needs of minority patients.

Professional and Public Education

As the structure of health care delivery changes, nurses, physician’s assistants, and other allied professionals 

will also become more integral to the provision of genetic services. Therefore, all health professionals should be 

educated about the full scope of prenatal genetic testing including the technological, social, ethical, legal, and 

moral implications of such service. It is clear that experienced health professionals will require retraining in 

pre-natal genetic testing. This will be a significant challenge because more experienced professionals are likely 

to be geographically and intellectually dispersed. They may not even recognize the need for genetic training.

The American Society of Human Genetics (ASHG) has developed a core medical school curriculum to 

develop skills, knowledge, and attitudes about genetic services that are currently needed, and will become even 

more essential in the future. The ASHG recommends that genetics education be interwoven with all aspects of 

medical education in both the graduate and undergraduate years, and that problem-based learning is particularly

well suited for genetics education because it involves integration of skills from many fields. A list of specific recommended competencies has been made available by ASHG. Medical schools must adapt these objectives to their

unique curriculum and promptly incorporate genetics education as an integrated part of physician education. 

Genetics education also provides an appropriate stepping stone for general ethics and communications 

education that already deserve more attention in provider training. The ASHG guidelines state “Students must 

learn to be sympathetic, non-judgmental, and non-directive counselors who recognize their own limitations, 

seek consultation whenever necessary, and become life-long, self-motivated learners.” Such qualities should 

be found in all providers of health care, genetic or otherwise. The need for genetic specialists will remain; 

nevertheless, all physicians must be as well versed in genetics as they are in pharmacology and physical diagnosis.
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The educational challenge does not fall on the shoulders of professional schools alone. In order for a robust

and fair debate about genetic technology to occur, the public must become erudite about genetics and the events it

potentiates. Science education at the primary, secondary, and college levels, must all include an in-depth component

about genetics that goes beyond rudimentary Mendelian Inheritance. The Committee on Assessing Genetics Risks

states: “Broad public participation will be required to develop educational approaches that respect widely varying

personal and cultural perspectives on issues of genetics, and are tolerant and respectful of individuals with genetic

disorders of all kinds. Particular effort is needed to include the perspectives of women, minorities, and persons

with disabilities who may feel especially affected by genetic testing technologies.”

Admirable efforts are being made by the ELSI program to promote education in public schools nationwide.

However, more funding will be required to effectively arm today’s children with the information that they will

require to be informed consumers of genetic information in the future. 

The media has a particularly central role in the dissemination of genetic information. Most major newspapers

have a health section, and television news often includes a regularly scheduled segment dedicated to health and

medicine. Information provided by the media often makes a lasting impression. Thus, efforts must be made to provide science, health, and medical reporters with a basic genetic education so that they can relay information within 

a framework that is based in science. The ELSI project has already begun efforts to educate journalists via The 

Virginia ELSI Project, “The New Genetics: Education of Professionals,” and should continue to broaden its efforts.

Expectations, Women, and Pregnancy

One noteworthy effect of prenatal genetic testing is what many consider the geneticization of pregnancy.

According to Lippman, one model of genetic counseling is in fact an assembly line approach to conception, 

separating out those products we wish to develop from those we wish to discontinue. New classes of lawsuits —

wrongful birth and wrongful life — are products of new genetic technology. It has been said that these plaintiffs 

did not consent to delivering a defective child because they were not adequately informed about all of the risks.

Most of these lawsuits stem from claims concerning improper information rather than technical failures in medical

procedures. Thus, it is critical that providers take complete genetic histories and have a complete understanding 

of all implications of such testing.

It would not be complete to explore prenatal genetic testing without acknowledging its inextricable link to

abortion. The abortion debate is certainly beyond the scope of this paper. However, if the Healthy People 2000

objectives are to be met, and 90 percent of women should receive prenatal testing, then clearly all women must

have access to the full array of reproductive options, including abortion. Mahowald states: “For individuals who

cannot terminate the gestation of an abnormal fetus because of the cost of the procedure, prenatal diagnosis may

not be worth the risk and discomfort that it entails.” Geographical distance also provides a considerable barrier 

to women who live in rural and other areas where abortion providers may be scarce.

Perhaps the greatest unknown about prenatal genetic testing is an understanding of how prenatal diagnosis 

really affects women. For screening initiated during pregnancy, the woman is usually tested for the trait before 
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her partner. When an abnormal result occurs, it is the mother who ultimately decides if the fetus should be 

aborted. The burden of an affected child is great on the parents, families, and society, yet it is the mother alone 

who decides if it is too great for any of us to bear. 

We must consider what genetic technology does to the experience of pregnancy and the perinatal period. 

Katz Rothman contends that decisions about abortion are always social rather than medical decisions. Will universal genetic testing for cystic fibrosis, as recommended by NIH, make mothers the gatekeepers of life? Prenatal

testing forces women to consider an adverse outcome. What impact does this have on the psychological bonding

between mother and child? What does it mean for a woman to know that she is carrying an “affected fetus”? These

are the kinds of wrenching questions that must be answered before we make sweeping recommendations about

genetic testing and introduce new technology to market. Prenatal genetic diagnosis has made a significant positive

difference in the incidence of certain genetic diseases in specific ethnic communities; however, more data is needed

before we can conclude that prenatal testing is beneficial to all expectant mothers.

The Federal Role

The Federal Government has a critical role in the area of prenatal genetic testing as both funder of most genetic

research, and as the purchaser of the nation’s health care. Through Medicare and Medicaid, the Health Care Financing Administration (HCFA) is now the largest purchaser of managed care in the country, accounting for about 18

million Americans. Medicare has covered cytogenetic studies for the diagnosis or treatment of genetic disorders in 

a fetus. Coverage is also provided for MAFP, chloride and sweat tests for cystic fibrosis, and hematologic tests for

sickle cell anemia. However, the switch to managed care has profound implications for prenatal diagnosis because

many nonprocedure-related genetic services, such as counseling, are not covered by many health plans. Were the

government to flex its financial muscle, comprehensive genetic services could become the standard of managed 

care nationwide.

Concern also exists about the future of insurance company involvement in prenatal diagnostic testing. Insurance is in the business of managing risk, and from the insurer’s perspective, what better way to manage risk than 

to have the power to predict which patients will become ill before they are even born? A case has been reported 

in which a couple from California, with a family history of cystic fibrosis, desired prenatal screening to determine

whether their unborn child would be affected. The insurance company agreed to pay for the test under the condition that they would not insure the child if affected. Although insurance issues are beyond the scope of this paper, 

it is imperative that the government continue to take the lead in evaluating the insurance needs of those with

genetic disorders.

Summary

Thus far, prenatal genetic testing policy has largely been constructed extemporaneously. This is largely due 

to unwillingness on the part of policy makers to enter into the volatile abortion debate. The result is nonuniform

access to testing, underutilization by minority groups, unclear guidelines about genetic counseling methods, and

uncertainty about the ability of women to utilize the full range of reproductive services. It is time for systematic 
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scientific thinking and common sense to lead prenatal genetic testing policy. Before we make any more broad 

policy decisions, we must investigate many issues surrounding testing, counseling, and access.

Recommendations

Because patient decisionmakers and counselees are mostly women, the Office of Research on Women’s 

Health (ORWH) of the National Institutes of Health should make prenatal genetic testing a research priority.

According to ORWH, “Research is needed on the psychosocial, medical, legal, and economic impact of genetic 

testing . . . particularly for women in minority groups and people of different cultures.”

Working with HRSA, CDC, and other NIH institutes and offices, ORWH should fund research to answer 

the following questions and issues:

• We need to ask the fundamental question: Is prenatal genetic testing good for women?

• What are the effects of prenatal diagnosis on mother/child bonding during the first year of life? 

(Especially those dyads where a genetic abnormality was found and the mother chose not to terminate.)

• Investigate further the role of culture and ethnicity in understanding genetic risks and perceptions about

reproductive choice. We have an obligation to conduct research to determine the nature of varying interpretations of genetic risk by race, socioeconomic status, and previous life experience.

• Support efforts by the ELSI project, Department of Education, and others to explore alternate mechanisms 

for genetic education such as computers, multilingual pamphlets, and videos.

• Work with HRSA to complete a comprehensive workforce assessment of genetic professionals including

counselors, physicians, and allied professionals. Special attention must be given to challenges of providing

genetic counseling to expectant mothers in underserved areas.

• In an effort to increase representation of minorities in the counseling profession, ORWH should support

grants to expand genetic counseling research and education in HBCUs and community colleges in predominantly minority areas.

Conclusion

This testimony provides a very brief overview of some of the complex policy issues surrounding prenatal

genetic testing. It is intended to provoke thought and spark discussion about the role of the Office of Research 

on Women’s Health and NIH in addressing these issues. I hope that you will keep this topic in mind during 

relevant working group and plenary session discussions.
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Brenda Crabbs Arthritis Foundation

My name is Brenda Crabbs and I am here today to testify on behalf of the Arthritis Foundation. I would like 

to thank Dr. Pinn for the opportunity to speak about the critical issues facing women’s health in the 21st century.

Dr. Pinn, we appreciate your leadership on women’s health issues and we look forward to working with you as 

we continue to push for research opportunities which will enhance the quality of life for all women. 

I will speak today to the prevalence of arthritis in society and in women, and the economic, social, and 

psychological impact of the disease. I will highlight the advances that have been made in arthritis research and 

the areas in which research is critical to understanding the triggers of rheumatic diseases, such as the role of genetic

makeup and hormones. 

In addition, I will address the need for outcomes in women’s health research to be measured not only in 

clinical terms but in whether these outcomes preserve the ability of women to function in roles which provide 

the greatest meaning in their life — the ability to work, to care for their home, and to be an active participant 

in the lives of their husbands and children.

In the United States today, 40 million individuals have arthritis and that number is projected to grow to 

60 million by the year 2020. Evaluations of the economic impact of arthritis to society have been done in the

aggregate for men and women. The cost to our nation of arthritis in lost wages, disability payments, hospitalizations, physician visits, and medications is close to $65 billion annually — representing over 1 percent of 

our Gross National Product.

The 100 forms of arthritis and related diseases are the most prevalent chronic conditions affecting women. 

Currently 23 million women have some form of arthritis and the number is expected to grow to 36 million by the

year 2020. In terms of size and cost, arthritis is an enormous problem and growing rapidly. Arthritis discriminates

against women by overwhelming numbers; rheumatoid arthritis affects three women to every one man, for systemic lupus erythematosus and fibromyalgia, the ratio is nine to one.

The economic, social, and psychological burden that arthritis imposes on women is enormous. First, arthritis 

is the leading cause of disability. Studies indicate that approximately half of patients working when diagnosed 

with rheumatoid arthritis become disabled within 10 years, suffering substantial earnings loses. 

Arthritis is the condition reported by women as the leading cause of physical limitations in activities of daily

living. The ability to function in highly traditional roles, such as shopping and maintaining family ties, are severely

reduced for women who have rheumatoid arthritis. The impact of arthritis on psychological status has been noted 

in terms of depression, coping strategies, anxiety, cognitive changes, self-efficacy, and learned helplessness.

There are several research advances within the last 10 years which stand out for arthritis patients. The use 

of methotrexate as a safe and effective long-term treatment for rheumatoid arthritis has successfully controlled

symptoms and reduced the need for steroids in adults and children. Researchers are exploring the use of methotrexate in treating other autoimmune diseases. 
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Research advances during the past decade have made Lyme disease an easily treated illness in most people.

However, in some people, the disease fails to respond to standard antibiotic therapy. Research is being conducted 

to examine the genetic makeup of individuals who do not respond to standard treatment. In addition, vaccines

against the bacterium that causes Lyme disease are being tested.

Joint replacement surgery, once confined to adults, has now become a more viable option for younger 

people. Improved surgical techniques and better implant designs have improved the longevity of implants 

and their performance.

Genetic research has uncovered genetic markers for an arthritis-related disease known as ankylosing spondylitis and rheumatoid arthritis, although the presence of the marker does not guarantee that the disease will 

develop. Research is continuing into the effort to identify the genes associated with the various forms of arthritis. 

Perhaps the most significant gap for women in arthritis research is the role of genetic makeup and hormones 

on a woman’s autoimmune system. In the autoimmune forms of arthritis such as lupus, scleroderma and rheumatoid arthritis, the immune system attacks the very elements of the body it is supposed to protect. Learning what 

sets off this deviation in the immune system will be a significant factor in finding a cure and developing more 

effective treatments for arthritis.

Further studies on the impact of pregnancy on women with rheumatoid arthritis and lupus are considered

likely to yield important information. Pregnancy produces immunologic changes which have a different impact 

on women with rheumatoid arthritis than on women with lupus. Rheumatoid arthritis tends to improve during 

pregnancy while lupus is more likely to flare during pregnancy. 

There are many questions that remain to be answered as to the role of a woman’s physiologic makeup as a 

trigger for arthritis. Could a woman’s body structure, designed to bear children, be a contributing factor to the 

cause of osteoarthritis? Is there a single arthritis gene or are a combination of genes involved? Finding the answers 

to these questions will provide critical clues to finding a cure for arthritis.

To date, we have learned much through our clinical and methodological research in rheumatology. We know

that interventions must be measured broadly in terms of clinical, humanistic, and economic outcomes that are

based in the reality of a woman’s life. Of critical importance to the Arthritis Foundation is the use of comprehensive measurements to evaluate research outcomes in the lives of women. Outcome measures that have meaning 

for women with a chronic disease, such as arthritis, must include a measurement of functional status and an 

assessment of their quality of life. These outcomes must be realistic and relevant to women’s lives. They must 

be developed to apply for a period of decades rather than months and they must place value in slowing the rate 

of decline in functional levels rather than maintaining functional status. It is imperative that good outcome measures in women’s health research in the 21st century are quantifiable, include the patient, and consider health 

status in terms of a women’s ability to function within roles of critical importance to her over the extended 

term of her life.
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Frances Cuomo, M.D. American Shoulder and Elbow Surgeons

New priorities for research in women’s health present themselves on a daily basis throughout the medical 

field, especially within the musculoskeletal speciality of orthopaedic surgery. Within our subspecialty of shoulder

and elbow surgery, the American Shoulder and Elbow Surgeons are confronted with a vast and varied number of

pathologies relating to the shoulder that are quite specific to the female gender. These disorders are responsible for

significant economic loss, medical cost, and emotional and physical burden that profoundly affect not only women

but the population as a whole. The three most common disorders related to the shoulder which primarily affect

females include osteoporosis-related proximal humerus fractures, frozen shoulder syndrome, and instability of 

the glenohumeral joint in teenage females. 

Proximal humerus fractures comprise approximately 5 to 7 percent of all fractures reported with 76 percent of

humeral fractures noted in patients over 40 years of age. This incidence significantly rises beyond the fifth decade.

While this is true for both men and women, the incidence is much greater in women. In a series of 249 fractures

reported by Rose and co-workers, 69 percent occurred in patients over 50 years of age. Of these, 85 percent were

in women and 15 percent were in men. Bengner and colleagues reported on 523 proximal humerus fractures of

which 82 percent occur in patients over 55 years of age. Seventy-nine percent of these fractures occurred in women

and 21 percent occurred in men. The rise in fracture incidence with age, and the higher incidence among females,

are characteristic epidemiologic features of fractures associated with osteoporosis, which should be considered an

important etiology in these injuries. Increasing osteoporosis-related fractures are linked to impaired vision, altered

balance, decreased muscle trophism, overall poor health, and predisposition to falls in the elderly. 

Elderly patients sustain proximal humerus fractures as a result of indirect and direct mechanisms of injury. 

The indirect mechanism consists of a fall unto the outstretched arm. In younger patients, this mechanism would

often result in a dislocation because the strength of the bone is much greater than that of the supporting ligaments.

However, in the elderly female with osteoporosis, the bone is significantly weaker than the ligaments and a fracture

results. The direct mechanism of injury consists of a blow to the lateral aspect of the shoulder. This may occur as

the patient stumbles and strikes the shoulder against a wall, the floor, or a piece of furniture at home. This usually

results in less displacement than a fall on the outstretched arm. 

Whatever the mechanism of injury, treatment is based upon the degree of displacement of the fracture. 

Treatment may range from nonoperative management with a sling and physical therapy to open reduction and 

internal fixation to reconstruct the shoulder or lastly, prosthetic replacement for fractures badly displaced or 

those in which the bone is to weak to hold internal fixation. Regardless of the method of treatment deemed 

appropriate, problems of obtaining healing, loss of fixation in soft osteoporotic bone, and stiffness plague the 

management of these difficult injuries. 

Rehabilitation of these injuries is prolonged even in the most minimally displaced fractures. We have found 

that even with nonoperative treatment in the more minor fractures, these injuries require at least 12 to 18 months 

in order to maximize the outcome. Outcomes vary with regard to the severity of injury and the type of treatment
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with overhead function being most unpredictable in the elderly. The prolonged postoperative and post-injury 

rehabilitation, including physical therapy visits and assistance needed in the home, is a great strain for all involved.

It is for the above stated reasons that we feel this is a very important area for focus of additional research. 

Specific areas to concentrate upon include prevention be it pharmacologic, educational, or physical rehabilitation. 

A second area of research might include bone reconstitution methods once obvious loss has already occurred. 

Lastly, the area of fracture management is of utmost importance including improved methods of fixation and 

healing enhancement techniques in the bone with poor osteogenic potential. 

Frozen shoulder syndrome is a disorder that has been described as a condition difficult to define, difficult to

treat, and difficult to explain from the point of view of pathology. Adhesive capsulitis has continued to be one 

of the most poorly understood disorders of shoulder motion, posing significant challenges to the clinician. Much 

of the problem has stemmed from the fact that it has not been easy to define or clearly differentiate frozen shoulder

from conditions with similar symptoms and findings but with distinctly different causes. 

The suggested working definition of frozen shoulder is a condition of uncertain cause characterized by 

significant restriction of active and passive shoulder motion that occurs in the absence of a known intrinsic 

shoulder disorder. Primary frozen shoulder represents the idiopathic condition and secondary frozen shoulder 

is one in which that is associated with a known intrinsic, extrinsic, or systemic abnormality. 

Although the exact prevalence and incidence of frozen shoulder is unknown, most studies report the cumulative risk for at least one episode to be approximately 2 percent. It is frequently found in patients between the

fourth and sixth decades of life and is much more common in women than men. The non-dominant extremity

seems to be more commonly involved, with most reported cases describing an affected left side. Bilateral involvement occurs in 6 to 50 percent of cases with 14 percent of these bilateral cases manifesting simultaneously. 

Different pathologic mechanisms have been proposed to explain the cause of frozen shoulder, but all remain

largely theoretic. Several investigators have proposed an autoimmune basis for frozen shoulder. Although some 

clinicians have reported high incidence of human leukocyte antigen B27 in patients with frozen shoulder, others

have not confirmed this association. In later studies, serum IgA levels were found to be significantly lower in

patients with frozen shoulder, and immune complex and C-reactive protein levels were increased. In general, 

however, sufficient evidence to support an immunologic theory has been lacking. Other etiologies which have 

been put forth include a biochemical basis, neurologic dysfunction, various endocrine disorders, as well as trivial

trauma and psychological factors also being considered. Despite efforts in these directions, sufficient evidence to

support these hypotheses has not been provided. It appears that the precise cause for the development of frozen

shoulder remains largely unknown. The condition probably results from the combination of host factors (i.e., predisposition) and extrinsic factors (e.g., trauma, hormonal changes, collagen-vascular disease, diabetes mellitus). 

The clinical presentation of frozen shoulder syndrome typically presents with a female patient between the 

ages of 40 and 60 reporting a gradual loss of function associated with vague discomfort about the shoulder after

minimal or no trauma at all. These symptoms, which are often worse at night, usually begin insidiously. Overhead
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and behind the back activities become especially difficult to perform as motion is diminished many times to no

more than 50 percent of overhead elevation and complete loss of internal and external rotation. These symptoms

closely resemble those found in patients with rotator cuff problems, thereby requiring a careful physical examination to consider frozen shoulder as the primary condition or one that is secondary to a specific shoulder problem.

The clinical hallmark of the physical examination is limitation of active and passive range of glenohumeral motion.

Pain may be absent when the shoulder is moved within its free range but is almost always painful at the extremes 

of motion and may be severely painful throughout the range depending on the timing of presentation. 

The natural history of frozen shoulder has been described as consisting of three phases, the initial or painful

phase is characterized by diffuse shoulder pain and progressive stiffness. This may last 3 to 9 months and is followed by the stiffening or frozen phase. During this phase, pain is diminished in a more comfortable but severely

restricted range of motion. This may last up to 12 months. In the thawing phase, motion and function gradually

improve over the next 12 to 42 months, although to a variable degree. Shaffer and associates have found that 

50 percent of nonoperatively managed patients were symptomatic at an average followup of 7 years, with a 

measurable restriction of motion in 60 percent of cases. Although early presentation seems to be associated with 

a more favorable outcome, manual labor, female gender, and dominant arm involvement have been implicated as

poor prognostic factors. In general the natural history of frozen shoulder is uncertain — additional randomized,

prospective studies are needed. 

Although frozen shoulder tends to respond to nonoperative management, this can take well over 1 year of 

significant incapacity to achieve adequate results. During this rehabilitation, there is often significant time out of

work with the financial and emotional burden which necessarily ensues. Treatment techniques involve manipulation under anesthesia and open or arthroscopic release of the shoulder which may return motion and function

more quickly but not affect the overall outcome. Prospective, randomized studies are desperately needed in this

area to determine the most cost-effective treatment program which also optimizes results.

Other areas of research include the pathogenesis. Is there a hormonal, menopause-related etiology or is this 

primarily a vasculitic phenomenon? Main areas of research for frozen shoulder syndrome appear to lie in both 

its pathogenesis and efficacy of treatment options.

Lastly, there is a large group of patients who suffer from what is known as atraumatic multidirectional instability of the glenohumeral joint which was first described by Neer in 1980. For the purpose of this discussion,

atraumatic instability is defined as instability that is insidious or spontaneous in onset with no history of significant trauma inducing the first episode of instability. For example, a person who experiences a first dislocation 

or subluxation of the shoulder while performing a minimal activity such as reaching overhead. Asymptomatic

hyperlaxity of one or both of the shoulders is not at all uncommon. This is typically seen in children who have

hyper-laxity but do not experience symptoms of instability or dislocation. Problems arise when the hyperlaxity

begins to cause symptoms and complaints. Symptomatic instability of this nature is very commonly seen in the

teenage female. The stereotypical patient is a young female with bilateral shoulder instability or hyperlaxity, symptoms and signs of posterior or multidirectional instability, and often generalized ligamentous joint laxity. The next
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description would also include hyperextension of the elbows and knees, hyperextension of the metacarpophalangeal joints of the hand, and the ability to bring the thumb down onto the volar surface of the forearm. 

Patients with multidirectional instability typically experience their first episode of instability in their early

teens, often before the age of 16. It is uncertain why this time frame can turn hyperlaxity into instability. The 

onset of menarche raises questions as far as implication with the transition from asymptomatic to symptomatic 

in the young female. 

The pathogenesis may be congenital or acquired. True congenital hyperlaxity causing instability probably 

is uncommon, as evidenced by the fact that instability is uncommon in children. Most of those that are seen 

probably are secondary to stretching of the capsular ligamentous tissue by repetitive microtrauma, such as that

caused by overhead activities (throwing, tennis, swimming). Why the female teenager is so much more frequently 

subjected to this disorder around the time of menarche and early thereafter raises the question of a hormonally

related phenomenon. 

Management of this difficult problem is complex and quite time consuming. Questions arise as to why some

patients respond to rehabilitation and others do not. If a nonoperative management treatment regime is elected, 

this requires daily exercises for at least 6 to 9 months to completely assess the efficacy of this approach. Should 

failure of a nonoperative treatment program occur, then surgical intervention is warranted but also carries with 

it a 1-year postoperative physical therapy and rehabilitation program in order to optimize results. Both of these

treatment programs are quite costly and time consuming as well as being responsible for a significant amount 

of time lost from school and daily activities. 

Future areas for research are sorely needed in the area of shoulder instability in teenage females. Questions

regarding the possibility of a genetic predisposition versus a process which is activated during menarche, and 

possibly hormonally related, need to be answered. The third category of rehabilitation is a very important area 

for research as well as basic science studies on the glenohumeral ligaments of the female shoulder.

The above shoulder and disorders represent a significant group of musculoskeletal pathologies afflicting

women which are very worthy of new and continued research. Any support which can be given to the advancement of knowledge within these areas would be worthy and greatly appreciated by all those who suffer from 

them as well as by all of the dedicated physicians within the American Shoulder and Elbow Surgeons who have 

dedicated their time and efforts in the quest for alleviation of pain and disability caused by these disorders.

Thank you sincerely for your time and consideration of these matters.

References

1 Cofield, RH. “Comminuted fractures of the proximal humerus,” Clin Orthop 230 (1988): 49–57.

2 Baslund, B, Thomsen, BS, and Jensen, EM. “Frozen shoulder: Current concepts,” Scand J Rheum 19 (1990): 321.

3 Lundberg, BJ. “The frozen shoulder: Clinical and radiographic observations,” Acta Orthop Scand [Suppl] 119:1 (1969).
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4 Rose, SH, Melton, LJ, Morrey, BF, Illstrup, DM, and Riggs, BL. “Epidemiologic features of humeral fractures,” Clin Orthop 

168 (1982): 24–30

5 Neer, CS II and Foster, CR. “Inferior capsular shift for involuntary inferior and multidirectional instability of the shoulder.

A preliminary report,” J Bone Joint Surg 62A (1980): 897–908.

6 Zuckerman, JD and Cuomo, F. “Frozen shoulder,” in FA Matsen, F Fu, and RJ Hawkins (eds.). The Shoulder: A Balance 

of Mobility and Stability. Rosemont, IL: American Academy of Orthopaedic Surgeons, 1993, p. 253.

Leilani Doty, Ph.D. Community Partners and University of Florida Health Science Center

Problems in Health Promotion and Disease Prevention

Most symptoms are evaluated and treated outside the formal medical care delivery system by the family 

health gatekeeper who synthesizes lay medical knowledge from multiple sources: personal experience with illness; 

vicarious experiences of morbidity in nuclear, peripheral, and public networks; and information gleaned from

assorted professionals including health practitioners and the media. A major gap in knowledge exists in the area 

of women and family health: self-perceived health needs and the translation of those needs into appropriate, 

accessible health education, and clinical services. In particular there is a gap in the health needs perceived by the

woman who typically is the health gatekeeper of the family unit, for it is the woman who treats the symptoms,

monitors the trajectories of chronic disease, transmits health information, teaches health practices, secures 

appointments, and administers medication. Further, there is difficulty in providing health education and services 

in ways that reverse the upward spiral in health costs, prevent life span disease, and promote healthy lifestyles.

Community Partners’ Study

A creative solution to this problem lies in a model project under development in Gainesville, Florida through

the leadership of Community Partners, a group comprised of volunteers. Community Partners links the University

of Florida faculty and students, especially from the Health Science Center, with people diverse in age and cultural

backgrounds from the public school system; community health services; civic, philanthropic, and volunteer organizations; and city and county governments. An interdisciplinary group, Community Partners, was formed in 1996 

to plan community-based activities involving Dr. Henry W. Foster, Jr., the Senior Advisor to President Clinton on 

Teen Pregnancy Reduction. 

The mission of Community Partners is health promotion and disease prevention. Community Partners has combined a variety of resources to study the health needs of the most underserved, local citizens. The study examines

health needs, health behavior decisionmaking, household and environmental risks, and self perceptions of health.

Students from the health profession from the University of Florida teamed up with local high school students to

interview household heads and to photograph neighborhood settings to evaluate subjective and visual-objective

health. In assessing the health promotion needs of the community, the researchers have identified key members
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including teens, adults, and elders of the underserved communities to train as health messengers. After learning

health messages through training in the Health Promotion School, the health messengers will share their health

messages with peer groups and neighbors, especially to foster health promotion behaviors in the community health

gatekeepers, typically the woman of the family. The Health Promotion School will train the volunteer health messengers to address, in culturally sensitive ways, strategies that promote health and prevent disease over the life span.

Evaluation of Outcomes

Outcomes of the Health Promotion School will be measured through pre- and post-course tests of changed

health professional students’ competence in community health promotion and disease prevention; through community patterns showing use of health facilities such as emergency rooms; by changes in health issues awareness; and

in changed numbers of prospective students from the community seeking entry to health training programs at the

public high school, the community college, and the University of Florida.

Summary

There is a need for research support for projects that partner academic health centers with community groups 

in a collaboration to identify and address the cultural diversity of the community and the self-perceived health

needs of the citizens, especially the family health gatekeeper, typically the woman — the primary health decisionmaker and provider of lay medical care in the family. Empowering key members of the underserved community 

to serve as health messengers for peers should result in appropriate, acceptable, accessible, cost-effective ways 

to promote healthy lifestyles over the life span of women and their family members.

Carolyn M. Dresler, M.D. National Task Force on Women Smoking and Lung Cancer

Lung Cancer and Women

Lung cancer is the number one cause of cancer death in women, exceeding the deaths from breast cancer by

22,000 per year. Between 1950 and the present, there has been a 550 percent increase in the numbers of deaths 

in women due to lung cancer. In 1991, 36 percent of all lung cancer deaths were in women and by 1996, this 

had risen to 41 percent. Thus, the lung cancer death rate is decreasing in men, but continues to climb in women.

Approximately 48 million people currently smoke in the United States — 25.3 million men and 22.7 million

women. Although data had suggested that smoking prevalence appeared to be decreasing as of 1991, more recent

surveys have demonstrated that the percentage of smokers has increased from 27.5 percent of students in grades 

9 to 12 in 1991 to 34.8 percent in 1995. In addition, these 1995 data demonstrate that girls and boys are now

smoking at equivalent rates: 34.3 percent and 35.4 percent, respectively. This increase in the prevalence of smoking is likely to reflect an increase in the incidence of lung cancers in the near future, particularly in women.
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Epidemiologic studies have demonstrated that women have a 1.4 to 2.9 times higher risk of developing lung

cancer than men, when the amount of tobacco exposure is controlled. In large case-controlled studies, the odds-risk

ratios for women have been consistently higher in women than in men. Authors of these studies have hypothesized

that women may be more susceptible to tobacco-related carcinogens for a given level of cigarette consumption, 

particularly when examined for the prevalence of the histological subtype of lung cancer — adenocarcinoma.

In addition to the risk factor of tobacco exposure, women may also be affected by their exposure to estrogens

and/or progesterones. Studies have demonstrated increased risk of lung carcinomas, particularly adenocarcinomas,

in women with increased exposures to estrogens. Estrogen is a known “growth hormone,” and has been identified

as a risk factor in the development of adenocarcinomas in the breast, endometrium, and ovary.

According to the NIH Accounting Office, approximately $100 million was spent in 1996 for lung cancer

research. This amount is compared to $600 million for breast cancer research ($300 million from the NCI and

$300 million from the Department of Defense) and over $1 billion for AIDS research. This allocation is inappropriately distributed for the health and societal costs resulting from the respective diseases.

The growing epidemic of lung cancer in women is an exceedingly important health problem, not only in 

our society, but of grave concern in the rest of the world. Women in exploding numbers are taking up smoking

around the world. The particular risk of women, smoking, and lung cancer is not at all understood. It is imperative that serious, in-depth, and well-funded research is directed to the multidimensional health problem of 

women and lung cancer.

Laura Flawn, M.D. Scoliosis Research Society

The Scoliosis Research Society is a research-oriented society dedicated to the pursuit of gaining knowledge 

about the causes, cures, and prevention of scoliosis and related spine deformities. As a representative of this 

Society, I would like to draw your attention to certain particular gender-specific spinal problems. Eighty percent 

of adult symptomatic scoliosis occurs in women. Progressive curvatures cause mechanical arthritic back pain, 

radicular or nerve root pain, loss of standing or sitting balance with trunk decompensation, and possibly even 

neurologic deficits.

Other spine disorders affecting primarily women are spondylolisthesis (both developmental and degenerative),

and postmenopausal osteoporotic compression fractures and related deformities. These are very disabling problems adversely affecting both quality of life and function. We would like to draw your attention to these potentially

devastating health problems and ask your involvement in directing research and promoting education into both

treatment as well as prevention.
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The Center to Improve Care of the Dying

George Washington University 

Janet Heald Forlini, J.D. and Institute of Medicine

My name is Janet Heald Forlini and I am here on behalf of both The Center to Improve Care of the Dying 

at George Washington University as well as the Institute of Medicine. Both of these institutions are dedicated 

to improving care at the end of life and I am pleased to be here today to let you know how important it is that 

you are focusing on this field of study.

Because of the myriad advances in medical technology, Americans are living longer, healthier lives. Most 

of us now die at an old age and from a protracted chronic illness. As such, the need for improved services at 

the end of life is greater now than it has ever been. Women have special concerns for end-of-life care: we die 

older, more lonely, poor, and often with prolonged disability. We also much more commonly provide care for 

seriously ill family members. 

The aging of the “baby boomers” has been one impetus for society’s recent focus on improving care for dying

people. Debates over physician-assisted suicide and pain management have also become commonplace. We at The

Center to Improve Care of the Dying are working to ensure that public policy is guided by data and thoughtful

deliberation. The Institute of Medicine’s Committee on Care at the End of Life, has written a blue print of recommendations from which the Office of Research on Women’s Health can build. 

To effectuate enduring reform, we need to know so much more about what can, and should, be done. Where 

is there the most room for improvement? What new treatments in service delivery strategies would really improve 

the experience for patients and families? Research is necessary to answer these questions. The NIH Office of

Research on Women’s Health has the opportunity to make a real change, by helping to force a focus on the 

lives of the seriously ill with eventually fatal illness. 

Death and dying will inevitably affect all of us; but these issues are especially pertinent for American women. 

First of all, women tend to live longer than men and are unable to afford supportive care during the last years 

of their lives. In 1990, the projected life expectancy for a man was 72 years while for a woman it was 79 years

(National Center for Health Statistics. Health, United States, 1993. Hyattsville, MD: Public Health Service, 1994

(1975-1990)). Given these statistics, there exists a major role for the NIH Office of Research on Women’s Health 

to play. Now is the time to improve cultural expectations, financial situations, and end-of-life care for women 

facing death and dying in America.

The Committee on Care at the End of Life at the Institute of Medicine called for more research into the 

physiology of symptoms at the end of life as well as the mechanisms of symptom relief. The committee also noted

some more specific questions which deserved increased attention as we age. (A summary of the committee’s most

important findings and specific recommendations for research possibilities are attached to the end of this written

testimony.) As health care providers react to financial pressures and patient care is made not only more compartmentalized but also more impersonal, what are the outcomes? What are the trends in patient assessment, charting
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in patient records, and pain measurement? What are the patterns of enrollment, continued enrollment, and disenrollment by seriously ill patients in both managed care and traditional health care settings? These are the types of

questions which need to be answered now. To do so, we need accurate research and data gathering — the NIH

Office of Research on Women’s Health can encourage that.

The Institute of Medicine noted other end-of-life queries ripe for focus. Discussions regarding the legalization

of physician-assisted suicide often note the importance of “competence” of the requesting patient. Model statutes, 

as well as the law considered by Oregonians 2 weeks ago, include “competence” as a requisite to assistance with 

suicide. Yet, there is no working definition for this term. Physicians have long been using subjective judgment to

accurately judge patient competence. There need to be screening tools developed, providing universal methods for

assessment. Researchers could also conduct trials using low-risk interventions to target strategies for improving

quality of life for dying individuals.

Why should these questions be tackled by a committee focused solely on women’s health issues? As mentioned

earlier, American women are more subject to need quality care given the extended life expectancy. And, if such

quality care can be provided in the home, rather than in an acute care setting, it generally will be women who are 

providing it. How can we work together to guarantee that American women do not need to dread the ends 

of their lives?

According to a 1988 study done by the House of Representatives Select Committee on Aging, 72 percent 

of all care givers are women, one-third wives, one-third daughters and one-third other women. (House of Representatives Select Committee on Aging. “Exploding the Myths: Caregiving in America.” Comm. Pub. No. 100-665.

Washington, D.C.: U.S. Government Printing Office, August, 1988.) Many of these women are caring for children

simultaneously. The average age of these women is 57, but one in four of these care providers is between the ages 

of 65 and 74, and 10 percent are over 75.

Improvement needs to be made in other contexts besides the hospitals and doctors’ offices. Business owners

should encourage caregiving in the home by allowing for extended family leave. Studies have shown that almost 

60 percent of employed care givers report that caring for loved ones interferes with their work. If a woman has to

fear the loss of a job, and therefore often her health insurance, how can she afford to stay home and take care of

her dying husband? Sometimes, the husband will be forced to enter a nursing home, costing the family and the 

system more money than necessary. Other times the women will bear the caregiving and also the penalty of a

thwarted work life. Addressing this requires research and education. 

Bereavement is also an issue that is often neglected in the continuum of care. What is the relationship 

between the care giver experience and the recovery of the family members once the patient has died? Are there 

certain social and demographic characteristics that make the grieving period better for some than others? Do 

certain ethnic groups handle death differently than others? These questions deserve answers. We can all benefit 

by figuring out the answers.

The Center to Improve Care of the Dying works to ensure that health care options at the end of life are 

tailored to individual needs. To see a tangible difference in what we can all expect when dying, our focus needs 
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to be one of comfort care and symptom relief, rather than one of cure and acute care, regardless of individual

needs. Through the efforts of the Office of Research on Women’s Health, perhaps we can work together to change

that focus. Sometimes cure is not always the appropriate goal for a dying patient. Perhaps if we changed our conceptual framework to one of “caring” rather than one of “curing” we could all expect a better death. The National

Institutes of Health’s Office of Research on Women’s Health has the ability to push others to confront these.

The following is a summary of some of the most relevant conclusions and themes of the Institute of Medicine’s

Committee on Care at the End of Life:

• Too many dying people suffer from pain and other distress that clinicians could prevent or relieve with

existing knowledge and therapies.

• Significant organizational, economic, legal, and educational impediments to good care can be identified 

and, in varying degrees, remedied.

• Important gaps in scientific knowledge about the end of life need serious attention from biomedical, social

science, and health services researchers.

• Strengthening accountability for the quality of care at the end of life will require better data and tools for

evaluating the outcomes important to patients and families.

The committee concluded that the knowledge and understanding that currently exist are insufficient to guide

the practice of evidence-based medicine in the appropriate direction. The National Institutes of Health has done

almost no research on end-of-life care. Research has focused almost exclusively on prevention, detection, or cure of

disease. NIH could add to these questions of symptom control, quality of life, and care giver effects on long trials.

Methods development is important to define and measure outcomes, including patient and family perceptions

about death, and to monitor and improve quality of care for Americans at the ends of their lives.

The Institute of Medicine made seven specific recommendations in an effort to address the existing deficiencies of our present care system. Recommendation #6 is directed at the National Institutes of Health and other

research organizations. It reads:

Recommendation 6: The nation’s research establishment should define and implement priorities for strengthening the

knowledge base for end-of-life care. The research establishment includes the National Institutes of Health, other federal 

agencies (e.g., the Agency for Health Care Policy and Research, the Health Care Financing Administration, the National

Center for Health Statistics), academic centers, researchers in many disciplines, pharmaceutical companies, and foundations

supporting health research. One step is to take advantage of clinical trials by collecting more information on the quality of

life of those who die while enrolled in experimental or treatment groups. A further step is to support more research on the

physiological mechanisms and treatment of symptoms common during the end of life, including neuropsychiatric problems.

Pain research appears to supply a good model for this enterprise to follow. To encourage change in the attitudes and understandings of the research establishment, the committee urges the National Institutes of Health and other public agencies to

take the lead in organizing workshops, consensus conferences, and other projects that focus on what is and is not known
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about end-stage disease and symptom management and that propose an agenda for improvement. Demonstration projects 

to test new methods of financing and organizing care should be a priority for the Health Care Financing Administration. 

For the Agency for Health Care Policy and Research, the committee encourages support for the dissemination and replication of proven health care interventions and programs through clinical practice guidelines and other means.

Julie Fleming Graham, M.Ed. Oglethorpe County Primary School

As the mother of a child who bravely fought cancer for 10 months before losing the battle, and as a public

school administrator who sees primary and elementary school age children who face medical challenges daily, 

I feel I can justify my testimony that many women’s health issues directly impact the learning of these students.

I would like to speak from personal experience before addressing childhood illnesses that I see everyday 

in the public school.

At 29 years of age, I was both financially and emotionally prepared to be a first-time mom. Not only was I 

happily married, my husband and I both had advanced degrees in education and we both were more than willing 

to accept the responsibilities that were required of parents. I was ready to put my career on hold and, as I look

back, I still have no regrets staying home to be a full-time mom. If there is such a “thing,” I had the perfect pregnancy. If there is such a “thing,” I had the perfect child; a seven pound, healthy boy who for 6 years never had 

any illness more than a runny nose. For 7 beautiful years, this child, Mark, led a lifestyle some children only read

about. He was the most blessed child in the world; he was reared in a stable and happy home with parents who

loved him enough to say “no” when needed and to say “yes” when appropriate.

Because we had the “perfect” child, my husband and I were happy to have only one child, who at 4 years 

old began asking for a baby brother. At 35 years of age, we brought another son, Lee, into the world and for 

5 months we were the epitome of the “Clever Family.” I thrived on being at home with my two boys and the 

thought of resuming a career back in the public school was the furthest thing from my mind. My whole world

revolved around my two sons and my husband. In September, 1986, our “perfect” world collapsed. Our 6-year-old

son, Mark, became uncharacteristically defiant and hard to please. He had little to no appetite and was having 

difficulty urinating. Because we were in transition from our military home in Ramstein, Germany to temporary 

living arrangements in Georgia to our final destination, Kirkland Air Force Base in Albuquerque, New Mexico, 

we dismissed Mark’s change in behavior to an upset in his routine and our lifestyle. Our goal was to quickly get 

settled in New Mexico so Mark could resume some normalcy; thus eliminating any stressors for him.

After 10 years, it is as painful to write about Mark’s illness and death as it was when we were living through 

the nightmare. If we could pinpoint the problem; if we could point a finger; if we could find answers, maybe 

we could accept his pain and death with more understanding.
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In September, 1986, Mark was diagnosed with Rhabdomyosarcoma, cancer of the bladder. On July 20, 1987, 

3 days after his seventh birthday, he lost his battle with cancer. His death certificate states: Cause of Death–

Uremic Poisoning.

During our many trips to the Pediatric Oncology and Radiation Clinic at the University of New Mexico 

Hospital, time after time I saw moms, in particular, who shouldered the responsibilities of their sick child’s needs.

This is not to imply that dads were not caring or involved, it merely says that moms usually were (and still are) 

the family member going to the hospital, sitting through the treatments, and basically serving as the communicator 

for the family with the doctors and nurses. Had I not already been a full-time mom, I would have had to resign 

my position at work because the day in and day out care required was overwhelming. I am convinced that my

being in a position full time to devote to Mark’s medical needs was one reason we were able to carry on.

Unfortunately, I saw many families where the father would “throw the towel in” and claim he could not take it

anymore. Never did I see a mom give in. For the past 10 years, I have made a summer pilgrimage to the University

of New Mexico Hospital to volunteer in the Pediatric Oncology Clinic just to work with children and families who

are dealing with cancer. I see the same pattern in families I saw in 1986. Usually the mom is the care giver and 

the parent who burdens the medical responsibilities. This, in my opinion, greatly impacts women’s health issues.

Moms, many who are single, have to deal with financial burdens, stress, and maintaining some sort of stable life 

for the sick child and, of course, siblings if there are any. In most families, I have seen that providing support for 

siblings is just as important as providing chemotherapy for the child with cancer.

My experience as a public school teacher for 13 years prior to my introduction to the world of childhood 

cancer was a plus for me because I was well prepared to listen to the doctors and to follow instructions. Early on 

I conveyed to Mark’s doctor, Dr. Marilyn Duncan, that I would stand back and let her deal with the medical “end”

while I dealt with the emotional “end.” Without having read a single book on how to deal with cancer, I knew that 

if I could keep Mark motivated and focused on living the life I knew a 6-year-old should live, we could win part of

the war with cancer. I trusted and respected Dr. Duncan from the moment I met her. I was open minded enough 

to listen to her and do what I was supposed to do. Her advice to us was to keep Mark’s life as normal as possible.

She said Mark would let us know his limits. All I needed was her permission to get him in school. With that 

stamp of approval, I began working with Mark’s first grade teacher who was truly a gift from God. She loved 

Mark enough to make him do his work, yet she was sensitive enough to acknowledge his limitations.

Looking back on the situation now, I shudder to think how Mark’s teacher and principal were able to comfortably allow our son to attend school without their fear of a potential lawsuit. I say that because Mark had a 

central line in his chest that could have been ripped out while playing on the playground. Because of Dr. Duncan’s

continual assurances that Mark would be fine, I willingly encouraged the school to work with us with the understanding that we were fully aware of the severity of his medical condition and we understood their limitations as 

to the amount of protection they could give him. Mark learned quickly to play near his teacher while on the playground and, as Dr. Duncan had said earlier, Mark set his own limits without them having to be imposed on him.

There were many many days I would take Mark to school only to sit in the car with our 4-month-old, Lee, in case

the school needed to contact me immediately. I was so much more at ease knowing I was within hollering distance 
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of him. Mark never knew the days Lee and I sat in the parking lot waiting for him to go home. There were only 

a few days that he was able to attend school all day. 

Throughout the entire 10 months, I had sense enough to realize that I had to take care of myself because if 

I got down physically or mentally, I would not have been any help to Mark. During this time, I was trying to be 

a loving and caring mom to our baby, Lee. “Moms helping moms” seemed to be the topic of discussion when we

met at the cancer clinic. We shared our stories. We cried and laughed together and we provided shoulders to lean 

on when the news from the doctor was not good. This emotional support group was a vital necessity then and it 

is just as necessary today when I talk one-to-one with moms during my summer trip to the University of New 

Mexico Hospital. If I had the time and resources, I would travel to the clinic at UNM and volunteer my help at 

least four times a year. The sick child is well cared for and I believe that the Pediatric Oncology Clinic at UNM 

is doing a wonderful job of offering support to family members including siblings. 

For years I dealt with the guilt of believing I had done something to create the “tumor.” Intellectually I knew

different, but not knowing what created this monster I chose to find fault with myself in particular. Ten years after

my son’s death, I can now talk about his ordeal. Not only did I lose my son, I lost my husband to a divorce, and

the family unit that we once were. For 5 years after our son died, my husband and I lived under the same roof 

but we never talked. The pain was horrific. Fortunately for the two of us, we chose to move on and today we 

are friends and are able to at least talk about Mark for a short period knowing the conversation will soon end. 

Knowing firsthand what it was like to sit in our son’s principal’s office and explain Mark’s limitations and our

educational expectations for him, I am acutely aware of parents needs when they now sit in my office and explain

to me the medical difficulties their child faces. As a teacher and now as a principal, I have had to relearn sensitivity

towards children’s and parent’s needs. What is a major medical concern to a parent is, in my opinion, trivial compared to what our son had to endure. 

Since 1972, I have worked in several different public schools and in each I have found a common bond: 

children with diverse medical and special needs. What is so alarming to me is the increase in numbers of children

who need to be served by a special education teacher for either a segment of the day or for the entire day. As an

administrator for the past 10 years, I have had a lot of direct contact with other administrators, teachers, students, 

and their families to validate that there is a growing need in our schools to provide more financial, educational, 

and counseling support. The most important health issues impacting our children’s learning are, in my opinion:

attention deficit disorder (ADD), fetal alcohol syndrome, learning disabilities, diabetes, behavior and emotional

behavior disorders, asthma, allergies, mildly and moderately handicapped, and OT/PT/OHI (orthopaedically 

handicapped or other health impaired). 

Those children who have been clinically diagnosed as ADD and who have supportive teachers and parents 

will, in time, succeed. For those children whose parents refuse to accept that there might be an attention problem

and who do not support the school’s efforts to help the child, we find a student who always becomes a major

behavior problem thus creating an environment that is not conductive to learning for anyone. We, meaning 

the school, never suggest medicine, but we do recommend that the parent take the child to a pediatrician for 
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a complete physical. We have an alarming number of children in our primary school of 522 who are ADD or who

have ADD characteristics. We know that attention deficit is a real disease, a brain disorder. Something different is

going on in these kids’ brains. When the component of hyperactivity is added, thus ADHD (attention deficit with

hyperactivity), other behavior in the child is evident. We always encourage parents to become involved with our

school and to become familiar with teachers and administrators and to keep an open working relationship with

them to design strategies through our Student Support Team to help their child with ADD or ADHD symptoms.

ADD or ADHD children are especially difficult for teachers to deal with. Every single teacher on our faculty has

been through staff development courses, attended seminars, and worked with counselors and pediatricians to 

help them cope with ADD/ADHD children. As supportive as teachers are, and as willing as they are to make every

modification possible, the emotional and physical strain of meeting these children’s needs and the needs of the

other students is overwhelming. I am surprised we have not lost more excellent teachers in the process. It is not

surprising to me that many parents are opting for private school or home schooling just so their child does not

have to come in second place to the needs of those children who require an inordinate amount of time and energy.

The Student Support Team meetings, the eligibility meetings, teacher and parent conferences, and the gathering 

of anecdotal data to document the child’s behavior are extremely time consuming for a teacher, especially if she

does not have any teacher assistant working with her.

We certainly cannot say a child is a “fetal alcohol baby” but when we see an increase in the number of children

with physically and emotionally challenging needs and Kindergartners who throw severe tantrums, we always make

initial contact with our Department of Children and Family Services (DFACS) and the Health Department to secure

a realistic background on the mother during her pregnancy. These children are hard to reach and much harder to

motivate. The growing number of special needs preschoolers in our rural county of 9,000 is unbelievable. We are

fortunate to have a support network through the University of Georgia to help us identify preschool-age children

who are in need of early intervention either in the area of speech, physical, mental, or emotional needs. For those

children who have had at least 2 years of competent intervention, they are more ready for our 5-year-old Kindergarten program in the public school. Many of our young mothers of these children are in their late teens compounded by the complications of trying to meet the needs of their child while at the same time trying to find their

place in life. Fortunately for our school, we have a part-time school counselor who works directly with these mothers offering them information on support services through our local agencies such as mental health, DFACS, and

the health department, to name a few. We see so many two parent families, families where the mom is the single

parent, and homes where the grandmother is trying to raise a second generation. This breakdown in the traditional family unit is challenging to us because, in many cases, there is not communication between parents, 

making it more difficult for the school to find a balance between what is best for the child while at the same 

time trying to effectively communicate with both parents.

In our school alone we have, in our 3- and 4-year-olds special needs preschool class, 16 children who are

either MID or MO (mildly or moderately handicapped) or OT/PT/OHI (orthopaedically handicapped or other

health impaired). In our kindergarten class of 173 5-year olds, we have one child who is identified as mildly autistic. He has a full-time teacher assistant. In each of the eight homeroom kindergarten classes we have at least one 

or more students who are going through the SST (student support team) process to help teachers define strategies 
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to provide for students who are exhibiting ADD characteristics or behavior characteristics. These students are 

generally referred to as having BD (behavior disorder or conduct disorder). We are careful not to begin labeling 

children at this age, but when behaviors dominate the class environment to the point the other children cannot

learn, intervention has to begin. Most of these children come to us from our special needs preschool as SDD 

(significantly developmentally delayed). One kindergarten class has a very bright student who has cerebral palsy.

Our first grade class of 174 has two children who each have their own teacher assistants. One child is 

autistic and the other qualifies for a self-contained special education class but whose parents refused that service. 

A diabetic first grader brings his insulin bag to school every day and we check his blood sugar level daily. His

mother repeatedly reminds us that she could own the school if we fail to check his blood sugar level. It is noteworthy to mention that because of our school size and because we are not a wealthy county, we cannot afford 

a school nurse. Needless to say, this puts an additional burden on our teachers and office staff.

Our second grade class of 167 students has two children who qualify for a self-contained behavior disorders

class but who are not being served because of the refusal of the parents. One child, in particular, will probably be

referred to a special school out of our county because of his daily outbursts of defiant and belligerent behaviors

which we cannot control. This child’s father murdered his girlfriend last year in front of the second grader and 

it was not until this year that some of his aggressive behaviors began to surface. 

A group of children who do not qualify for special education, but who require individualized medical 

attention, are those who suffer daily from allergies or asthma. A typical day in the office is seeing a cadre of children who come through for either their morning or mid-day dose of ritalin, allergy medication, or who use their

personal breathing machines. Children with asthma and allergies seem to be on the rise in our schools. Students

are absent more during the Spring, and according to their parents, it is always an allergy/asthma-related problem.

Although I cannot scientifically prove this, I am convinced our schools indirectly contribute to the problem by

allowing classrooms to be carpeted. While some may argue that carpet is pretty, cuts down on noise, is cheaper

than tile, and is warm to sit on, I argue that carpet is a haven for germs, mold, odor, and other unseen microorganisms. When a primary school age child has an accident on the floor, it is almost an impossibility to completely clean and sanitize that area. Bodily fluids such as mucus from the nose, blood, urine, saliva, and sweat 

are excreted onto the carpet making it a “bedroom” for an unsanitary environment. I have discussed this issue 

with our superintendent and he wholeheartedly agrees with me that carpet does indeed pose medical risks for 

our children, but the bottom line for our school, and many other schools, is that it is more cost effective to replace

carpet rather than to install tile. Because I am in a position to make sure the janitors do their jobs, I am particularly observant to make sure the carpeted classrooms where children work, play, rest, and waller, are vacuumed 

and cleaned daily. To add insult to injury, we seem to be plagued with an overdose of roaches in our building that 

is 42 years old. Although the building is old, it is well built and a source of pride for the community. Hopefully, 

when our taxpayers vote for the special local option sales tax (SPLOST), they will vote “yes” thereby providing

much needed money to renovate our building. Old pipes, holes in floors, and standing water all contribute to our

roach problem. When we spray for bugs, we aggravate allergies. When we do not spray, we allow roaches to roam

the halls. It is truly a no-win situation because the problem is there, yet there seems to be no fail safe answer.
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As I reflect on the medical challenges educators face in the public schools everyday, I immediately think about

the “Mark Fite’s” in the world who go to school with central lines, bald heads, no appetites, and a desire to be normal. I am blessed to have been Mark’s mom. He taught me the true meaning of pain, perserverance, self control,

integrity, and indominable spirit. I greet the ADD/ADHD, autistic, diabetic, BD, EBD, MI, MO, OT/PT/OHI, and 

LD children with loving arms every morning and thank God they will never have to endure vincristine or radiation. 

I now can smile and offer a loving hand when a child comes into the office needing a bandaid for a simple cut. I

can now recognize the need to be sympathetic to the crying mother who tells me her baby cannot come to school

because his tummy hurts. Dear Lord, save this poor mom from ever having to deal with a life threatening illness.

Everyday, more than 5 million children in this country swallow drugs or inhale sprays to help them fight against

ailments such as ear and throat infections and asthma. Mark would have willingly swallowed a mid-morning pill 

to get rid of his cancer. He fought 10 long months, but because of his will to live like a normal 6 year old, he 

was able to maintain a full life with the support of his devoted family and doctors like Dr. Marilyn Duncan.

Phyllis Greenberger, M.S.W. Society for the Advancement of Women’s Health Research

Good afternoon. I am Phyllis Greenberger. I am pleased to be here today among so many distinguished

researchers and advocates for women’s health research. I want to thank Dr. Vivian Pinn and her colleagues at 

the Office of Research on Women’s Health for inviting me and for organizing this important meeting. Along with

many of you in the audience, I can remember when a forum on women’s health was considered revolutionary. 

I am glad that enough progress has been made since the initial Hunt Valley meeting that there is now a need to

assess the state of women’s health and women’s health research in the context of today’s knowledge. The issues 

that will be discussed and analyzed at this meeting are at the cutting edge of scientific knowledge.

I would like to begin by offering a capsule view of the Society for the Advancement of Women’s Health

Research, of which I am executive director. The Society was founded 6 years ago by scientists, researchers, and

activists because of a mounting concern that the health of American women was at risk due to the biases and

inequities in biomedical research. The Society, working with others, exposed striking inequities in biomedical

research including inadequate funding for research on diseases primarily afflicting women; the lack of interdisciplinary research and longitudinal data on women’s health care issues; the exclusion of women from clinical 

trials; the lack of gender analysis; and the dearth of female researchers. 

Since 1990, the Society has made notable contributions on Capitol Hill and within the medical and scientific communities. It has served as a catalyst for advances in women’s health, including strengthening policy 

ensuring women’s inclusion in federally funded clinical research, the establishment of a permanent Office of

Research on Women’s Health at the National Institutes of Health, and advocating for increased funding for the

National Institutes of Health.
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The Society sponsors professional and scientific meetings, including an annual Congress on Women’s Health. 

It publishes studies and reports based on these meetings, produces educational videotapes, and sponsors the peerreviewed publication, Journal of Women’s Health. The Society’s recent public education efforts include “Get Real,” 

a health education program for young women 18 to 24, developed in partnership with the Office of Women’s

Health of the U.S. Public Health Service.

Now, I would like to address the specific area that the Society believes is the next frontier for women’s health

research — gender-based biology. It is a testament to the work of all of us here, as well as others in the private 

and public sectors, that there is recognition that gender differences exist. And while we still may encounter a 

great deal of skepticism, no one has to convince us. Why gender differences exist is another question, and that 

is the area to which the Society is turning its attention.

The Society’s President, Dr. Florence Haseltine, describes the need for the concept of gender-based biology 

in the following words. And I quote: “In other disciplines, like genetics, for instance, there is a body of knowledge

that focuses what a scientist does and how she, or he, approaches a problem. The power of a discipline resides 

in the fact that when a new idea is produced, immediately, the idea is integrated into an already existing body 

of knowledge. For scientists and doctors, this existing firmament of knowledge guides their thinking and assists

them in patient treatment and care.”

“Therefore, when we talk about women’s health and research, we are talking about gender differences. 

At the Society, we are beginning to provide this idea with a structure that can be discussed by people from 

different scientific disciplines. We call it gender-based biology.”

Gender-based biology involves the examination of the basic biological and physiological differences between

men and women. We believe this protocol has implications for research, clinical practice, disease prevention and

manifestation, medical education, and public health policy.

I would like to illustrate the concept of gender-based biology with a few examples, the first of which is from

the field of genetics. We know from Medelian genetics that basic chromosomal patterns are inherited from the joint

contribution of DNA from our mothers and fathers. At times, the genetic content of only one parent is expressed.

This phenomenon is called “imprinting.” When imprinting occurs, DNA from only one parent is expressed while

the imprinted gene is not functional.

At the Society’s 1995 Scientific Advisory Meeting, Dr. Louise Wilkins-Haug, medical director of the Antenatal

Diagnostic Center at Brigham and Women’s Hospital, noted instances in humans where imprinting has been linked

to specific genetic malformations, such as Prader-Willi and Angelman syndromes. What is of particular interest is

that when the maternal set of genes is expressed, and the paternal genes are lacking, a person gets Prader-Willi 

syndrome; when the opposite occurs, the paternal set of genes is expressed, and the maternal genes are lacking, 

a person gets Angelman syndrome. Dr. Wilkins-Haug called for further investigation into the determinants of 

this phenomenon.
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At the same meeting, Dr. Eric Orwoll, associate professor of medicine and chief of endocrinology and metabolism at the Oregon Health Sciences University, addressed gender differences in the human skeleton. He noted that

there is a difference between men and women in periosteol bone formation which is not promoted by estrogen. 

Dr. Orwoll recommended researchers exploit these differences in bone biology between men and women in 

order to understand how we can intervene in osteoporosis, a painful disease that affects both men and women.

Dr. Ernst Wynder, president of the American Health Foundation and principal investigator on a retrospective

analysis of lung cancer cases between 1981 and 1994, stated that the study suggests that “women may be more 

susceptible to DNA-damaging carcinogens (including those in tobacco smoke) than men.” He thinks it is likely that

there is “an endogenous factor that increases a woman’s risk (of lung cancer).” Dr. Wynder speculates, “...women

begin smoking later than men, they smoke fewer and lighter (tar) cigarettes than men...and yet they have a higher 

risk of developing lung cancer.” And he offers three possible explanations for the variations in risk — gender 

differences in metabolism; gender differences in certain enzymes which may be part of drug metabolism; and 

the influence of estrogen, whether naturally produced or taken as medication.

Dr. Jean Hamilton, Betty Cohen professor of women’s health at the Medical College of Pennsylvania and 

Hahnemann University, noted that “physiological studies in humans have long revealed ... (gender) differences 

in multiple mechanisms affecting drug absorption and bioavailability, distribution, metabolism and elimination.”

She stated that for drugs metabolized by the liver and some primarily excreted through the kidney, “... (gender) 

differences have been observed with females showing greater bioavailability and slower apparent clearance.”

According to Dr. Hamilton, gender affects multiple mechanisms underlying pharmacokinetics. This means 

that these effects cannot be altered merely by changing dosage on the basis of weight.

Dr. Ruth Merkatz, senior advisor to the commissioner of the Food and Drug Administration, stated that 

since the 1993 guideline on the participation of women in drug evaluations was published and comments were

received, it has become apparent that “there are important scientific questions about gender-based biology and 

gender analysis that affect (clinical trial) design.” She further emphasized that “these warrant careful attention 

and scrutiny in an effort to promote both internal and external validity in scientific research.”

The Society believes that an organized and methodological approach to gender-based biology could promote 

a better understanding of why gender differences exist and their implications. We should, in addition to identifying and accepting gender differences, ascertain why these differences exist. What are the mechanisms underlying

the differences? What do the differences tell us about a system as a whole? What are the implications for disease

manifestation and treatment. The Society believes that answers to these questions could strengthen our understanding of health and disease.

As I so briefly illustrated, scientists from a variety of disciplines have observed basic biological differences

between the genders that significantly impact disease development and treatment. There is increasing evidence to

support the study of gender-based biology, which until now has been produced as a byproduct of other research.

As we at the Society work to provide a framework for this area of study, we would appreciate your keeping us

informed of any new findings that you or your colleagues observe.
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Because of the potential significance of a gender-based biology protocol, serious attention by the scientific 

and medical establishment is necessary. The potential implications of gender-based biology — for research, clinical

practice, disease prevention and manifestation, medical education, and public health policy — invite more rigorous

investigation. Just as the discovery of the double helix revolutionized the field of human genetics in the early

1960s, the practice of clinical medicine could be dramatically different if the theory of gender-based biology

receives adequate attention in the research community.

Letha Y. Griffin, M.D. American Orthopaedic Society for Sports Medicine

I am pleased to present the following testimony on behalf of the American Orthopaedic Society of 

Sports Medicine (OASSM).

Over the last several decades, there has been a marked rise in the number of women participating in 

recreational and competitive sports. For example, the number of women athletes in our high schools rose 

from approximately 300,000 in 1971 to almost 2 million in 1990 — nearly a sevenfold increase. Colleges 

are seeking to provide women with scholarship opportunities equal to men, and although only 96 women 

competed for the United States in the 1972 Olympics, 280 women competed in 1996 with the U.S. women’s 

teams making an extremely strong showing in multiple sports.

Unfortunately, as the number of women athletes has grown, so have the numbers of injuries they sustain. 

These injuries are of great concern to us in the AOSSM. Unfortunately, for many of these injuries we lack a 

clear understanding of the factors which cause the injury, and therefore we are handicapped in constructing 

adequate preventative programs.

Moreover, many treatment programs for these injuries are controversial and greater funding for outcome 

studies is needed to resolve these controversies. Questions which need to be answered include: Should women’s

injuries be treated similarly to men’s? Should their rehabilitation programs be structured differently? What are 

the psychological responses of women to their injuries and how do these influence outcomes? Research must 

be done to discover these answers if we are to secure safe participation for our women athletes.

Noncontact injuries to the knee’s central ligament or the anterior cruciate ligament (ACL) is an example 

of such an injury. This ligament is a key stabilizer of the knee joint. Injuring it can predispose the knee joint to

recurrent injury and subsequent arthritis. The rate of ACL injuries in the general population is approximately 

0.38 percent per thousand per year. However, this rate is markedly increased in athletes participating in pivotal

sports such as basketball, soccer, volleyball, and skiing.

A study done by Arendt and Dick on the incidence of ACL injuries in collegiate soccer and basketball, 

utilizing the National College Athletic Association Injury Surveillance System data from 1989-1993, confirmed 
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previous reports that ACL injuries were twice as frequent in women soccer players as in men and four times 

as frequent in women basketball players. Further substantiation of this increase in ACL injuries can be found

throughout the literature published in the 1980s and 1990s.

Recently, this marked increase in the incidence of ACL injuries in women athletes has attracted the attention 

of the news media as illustrated by the many local news articles, such as this one, which have appeared in various

towns throughout the United States describing local sports heroes whose participation was halted by an injury 

to this ligament. Many of you may remember reading this article which appeared in the February 1995 issue 

of Sports Illustrated and brought national recognition to the epidemic proportions of ACL injuries among those 

women participating in high-risk sports.

Although several authors of ACL injury surveys in women athletes have looked at the mechanism of ACL

injuries, they have not speculated as to the cause. Arendt and Dick suggest the cause for the increased incidence 

of ACL injuries in female athletes is probably multifactorial, and suggested several intrinsic and extrinsic factors 

that might contribute.

Intrinsic factors include: Extrinsic factors include:

• Joint laxity • Muscular strength

• Limb alignment • Neuromuscular control

• Femoral notch dimension • Body movement

• Ligament size • Skill level

• Hormonal influences • Shoe-surface interface

All of these factors have been mentioned as probable causes. The degree to which each of these factors 

may contribute to this injury, and the interrelationship between multiple factors, remains largely unknown. 

The emotional consequences of this all too frequent injury is great not only for the athlete and her family but 

also, frequently, to teammates and to the entire school. The financial impact is also large and is not only carried 

by the athlete, her family, and their medical insurer, but ultimately by society in general.

More money allocated to muscular skeletal research gives us the financial ability to pursue the studies 

needed to identify the causes of this and other commonly occurring injuries of female athletes. It is only after 

we understand the causes of these injuries that we can begin to develop adequate prevention programs. The 

goal, ultimately, is through prevention to markedly decrease the occurrences of these dreaded injuries that 

occur, all too commonly, resulting in significant consequences to our young people.
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Andrew A. Guccione, Ph.D., P.T. American Physical Therapy Association

The American Physical Therapy Association is pleased to provide a summary of its written testimony to 

the Office of Research on Women’s Health. The Association believes that research is especially needed in the 

following areas:

Prevention of Chronic Conditions

• There needs to be continuing research emphasis on the prevention of osteoporosis and hip fractures.

• The influence of exercise and physical activity on balance activities, including the prevention of falls, 

should be studied more extensively.

• Additional research is needed on the benefits of exercise for the prevention of disease and disability.

• Research is needed to identify strategies that can be employed during childhood, adolescence, and 

adulthood to encourage women to develop good health habits.

Chronic Conditions

• Increased research is needed on chronic conditions and diseases that impact the quality of life of 

older women in the United States.

• Research is needed to identify the most effective way to reduce musculoskeletal impairment and 

improve function.

• Research on intervention for osteoporosis, including studies on the clinical effectiveness of weight 

bearing is indicated.

• Research on rehabilitation interventions which improve functional status following stroke is indicated.

• Additional research is needed on quality of life in individuals with diabetes.

• Research on the prevention and treatment of cardiovascular disease through cardiac rehabilitation 

for women is needed.

• Additional research is needed to improve urinary incontinence treatments, including therapeutic 

exercises, electrotherapeutic modalities, and biofeedback.

Recreational and Sports-related Injuries

Investigations into the prevention, causes, and treatment of athletically related musculoskeletal injuries, 

especially knee injuries, are needed.
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Environmental

Attention should be given to interventions which influence the outcome of women with carpal tunnel 

syndrome and other repetitive strain injuries. In particular, research is needed to identify practical, effective 

ways to protect workers from job-related musculoskeletal risks, including repetitive stress syndrome.

Additional Topics

• Biomedical research should be expanded to ensure emphasis on conditions and diseases unique to, 

or more prevalent in, women of all age groups.

• Research is needed to investigate the effect of interventions, including surgery, on female anatomy 

as well as the impact of these interventions on women’s health.

• Research is needed to study the etiology and treatment of the high incidence of musculoskeletal 

problems in menopausal and postmenopausal women.

• Studies that investigate how exercise can promote healthy aging in women are especially indicated.

• Investigations targeting the identification of domestic violence by health care professionals are necessary.

Recommendations to Promote Research on Women’s Health

• Promote efforts to include women in clinical trials, including choosing study site locations and hours 

that are conducive to participation by women.

• Promote funding for programs that foster women’s health research.

• Expand the mission of the Office of Research on Women’s Health to monitor funding for women 

researchers and career opportunities.

Betty B. Hambleton Health Resources and Services Administration

HIV/AIDS Among Women

The proportion of total AIDS cases attributable to women is increasing, rising from 7 percent in 1985 to 20

percent in 1996. HIV infection is the third leading cause of death among women ages 25 to 44, and the leading

cause of death among black women in this age group. Black and Hispanic women are disproportionately affected,

accounting for 59 percent and 19 percent, respectively, of cases reported for women in 1996 — rates that are 

17 and 6 times higher than for white women. In 1994, transmission via heterosexual contact surpassed transition 
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via drug use; however, sexual contact with a drug-injecting male accounts for the majority of heterosexually

acquired AIDS cases among women.

As the federal agency that provides health care to underserved and vulnerable Americans, the Human

Resources and Services Administration (HRSA) focuses many initiatives on addressing the health needs for 

improving the health status of women. In addition to the community-based health centers offering primary care 

clinical and screening services, and support for the education and training of the health professional workforce, 

special services are funded through the Ryan White CARE Act (RWCA) of 1990, administered by HRSA’s new

HIV/AIDS Bureau, to assist HIV-positive, substance-abusing women, better integrate comprehensive primary 

care and HIV-related care, and to prevent perinatal transmission of HIV.

Title I of RWCA funds eligible metropolitan areas most severely affected by the HIV/AIDS epidemics. About 

30 percent of clients are women, many of whom participate on planning councils established to assess needs, gaps 

in care, and to set priorities. Title II provides formula funding to states and territories to improve quality, availability,

and accessibility of health care and support services for people living with HIV disease; nearly 28 percent of these

clients are women. Under Title III, public and private nonprofit entities are funded for outpatient primary care 

and early intervention services. Of 83,000 HIV patients receiving health services, 794 were pregnant women. An

assessment is underway of current HIV counseling and testing services delivered to women of childbearing age 

and pregnant women in the Community and Migrant Health Center, Health Care for the Homeless, Health Care 

for Residents of Public Housing, and other programs administered by HRSA’s Bureau of Primary Health Care. 

Title IV funds public and nonprofit entities to increase access to research and comprehensive, community-based 

systems of care for children, youth, women, and their families. Fifty-three percent of the clients are adolescent 

or adult women, and more than 25 percent of newly enrolled clients are pregnant women and mothers. The

Women’s Initiative for HIV Care and Reduction of Perinatal HIV Transmission develops models of care that 

enhance outreach, counseling, and testing services for women. In 1996, the network of projects provided 

counseling to more than 12,000 women.

The education of primary health care providers about HIV-related issues is carried out through HRSA’s

National AIDS Education and Training Centers Program. More than 400,000 providers have been trained 

under this program since 1991.

HRSA will continue to monitor changes in health needs of women with HIV/AIDS. Research will be 

carried out to better understand the utilization and effectiveness of its programs and services on the behavior 

and health status of these women.
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Jo Hannafin, M.D., Ph.D. Orthopaedic Research Society

The Orthopaedic Research Society is an organization of close to 2,000 individuals (M.D.s and Ph.D.s) who 

do research on the musculoskeletal system. In her testimony Dr. Hannafin, an orthopaedic surgeon specializing 

in sports medicine, as well as a researcher studying tendon and ligament healing, will provide information on the

role of women in the Research Society and in the Orthopaedic Research Community, as well as presenting data 

on the advances and unanswered questions pertinent to the Women’s Health Initiative. Specific areas which need 

additional research which will be discussed are:

Osteoporosis — especially in the younger woman, a field in which there are numerous questions.

Injuries in the female athlete — with emphasis on increasing numbers of women in sports and recent data 

on the types of injuries, and the questions that must be addressed in the future.

Musculoskeletal consequences of breast cancer therapy — with insights into the advances that have been made 

in the treatment of breast cancer, and the established effects of some of these therapies on bone.

Wayne State University

Susan L. Hendrix, D.O. Detroit Medical Center

My name is Susan Hendrix and I am an obstetrician/gynecologist representing Wayne State University and 

the Detroit Medical Center. I am the principal investigator of the Women’s Health Initiative, Detroit Clinical Center,

and Director of the Medical Center’s Center of Excellence in Women’s Health. I am here today to add three areas 

to the future research agenda in women’s health.

Disease prevention and medical (not surgical) treatment for disease are high on the priority list for women 

of all ages. Ectopic pregnancy, pelvic prolapse, and alternative treatments for menopause are three conditions 

readily available for prevention, treatment, and clinical trial research.

Ectopic Pregnancy

Ectopic pregnancy, the implantation of the fertilized egg outside the uterine cavity, is the most common 

cause of maternal death in the first 12 weeks of pregnancy. The incidence of ectopic pregnancy has increased

approximately threefold from the 1970s to the 1990s. The increase is attributed to many factors, including an

increasing incidence of pelvic inflammatory disease, use of tubal reconstructive surgery and assisted reproductive

technologies for infertility, use of tubal ligation for sterilization, and use of intrauterine devices. Ectopic pregnancy is associated with an annual cost exceeding $1 billion in the United States.
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Technological advances over the last 10 years now allow for early diagnosis. Specifically, highly sensitive blood

tests for detecting pregnancy hormone, high-resolution ultrasound, and the aggressive use of laparoscopy have

allowed clinicians to identify and treat this condition earlier in its course. Surgery has been the mainstay in the

treatment of patients desiring future fertility.

It is because of these technological advances that we are now able to diagnose ectopic pregnancy without 

using surgery, including laparoscopy. Recently, methotrexate, a medication used in higher doses for the treatment 

of cancers, has been successfully used to treat patients with ectopic pregnancy. Use of ultrasound, combined with

blood tests, allows patients to avoid surgery and the complications of surgery, reduces health care costs by reducing the need for hospitalization, and possibly improving long-term fertility. Studies are needed to determine the

most effective and safest treatment of ectopic pregnancy, as well as determine which treatment affords optimum

potential for future pregnancies.

Pelvic Prolapse

Genital prolapse (the detachment of the uterus, vagina, rectum, and bladder from their normal support) 

is a common condition in women. It is not clear who will develop pelvic prolapse or why, but the condition 

progressively worsens with age, and prevention measures at an early age are impeded by difficulties in identifying patients at risk.

Little is known about the risk factors. Obstetric trauma has long been thought to be the most important 

factor in the cause of prolapse. Childbirth, in particular, has been thought to damage pelvic connective tissues 

and nerves, leading to subsequent prolapse and/or urinary and fecal incontinence. Other considerations include 

the role of prolonged labor, birthweight, and vaginal operative delivery on the risk of urogenital prolapse.

Surgical management of this condition is the gold standard. However, more research is needed to better 

understand the causes of this condition and ways to prevent it.

Alternative Menopausal Treatments

Because physicians cannot answer their health questions, menopausal women are taking matters into their 

own hands. They want coordinated, comprehensive, and preventative health care that is based on cutting-edge

research. For many women, traditional approaches to the treatment of menopause are unacceptable. Estrogen

replacement therapy causes some patients to have irregular vaginal bleeding, breast tenderness, or an increase 

in headaches. Others may have had breast cancer or fear an increased risk for breast cancer from the hormones.

They are turning to alternative treatments, including phytoestrogens and herbal remedies, for symptom relief 

or disease prevention. They feel safer with these therapies. However, “natural” does not necessarily mean safer or

better treatment. The strength of plant products can vary and there is no quality oversight to the production of

these products. Women need to realize that just because they appear in a health food store, doesn’t mean they’ll 

do no harm. Only clinical trials on the safety and efficacy of these products will answer that question.
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Mary Hepburn, B.S. Self

I am not a doctor of research into women’s health, but hopefully my life as a disabled woman will shed 

some light on this important topic. Although I am pleased to address this group about women’s health in the 

21st century, I have gone through a lot of soul searching about what my experiences can offer.

Disabled women have confronted many obstacles in health that alter their lifestyle, both long and short 

term. Hearing a diagnosis of multiple sclerosis (MS) in 1981 affected all choices of my life.

With the diagnosis of MS, the person’s coping skills are front and center. Obviously, there is physical imbalance, but also an emotional and spiritual imbalance. A balance among all three creates a lot of turmoil for the 

individual and the family. Examples would include the changing of the job experience, thanks to a voluntary 

early retirement from NIH in 1994. The need for around-the-clock help causes limited privacy. There are bound 

to be changes in these areas.

If you’ve ever undergone any home remodeling or renovation, you might have an idea of the turmoil that 

has turned my world topsy-turvy and caused chaos — and some days total frustration.

This trip is the most recent example of the planning and logistics that have become part and parcel of my 

life as a disabled woman. There were many phone calls between Nebraska and Maryland about minute details, 

of which most people are not aware. For example, a care giver would have to accompany me. It was necessary 

for me to drive 5 hours to a major airport, because commuter flights aren’t accessible for me and my wheelchair.

Special arrangements had to be made ahead of time with the airline to accommodate my situation. Arrangements

for a specialized taxi that accommodates wheelchairs would be necessary. How would I get from the wheelchair 

to the bed since I cannot stand? Would I take my Hoyer lift? Would the lift even fit under the motel bed? What

other accommodations would be necessary? Endless lists were highlighted and rewritten many times. Spontaneity

was out the window.

I recently encountered a mammography machine that is designed for those women who can stand. The contortions that my body had to endure to conform to this machine were almost comical afterward — but not during.

Any kind of exam by a doctor is a challenge to get from the chair to the examining table. Just imagine.

Another obstacle is the obvious change in surroundings. First, in the work world, I was conditioned by the 

good old-fashioned work ethic. Now, if only my body would do what it is supposed to do ... Instead, I’ve had 

to take a detour in order to satisfy the need to be productive in other ways or change my priorities. I write a 

weekly column for the local newspaper. I tutor adults in reading at the local community college. I teach junior 

high students about the world of journalism. I participate in church activities. The list keeps going.

There have been the obvious physical changes that have occurred. A bystander will see the wheelchair 

and conjure up all sorts of thoughts and opinions. “Obviously, this person is mentally as well as physically 

handicapped.” In reality, these are two different issues.
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Before I left NIH in l994, I wrote a column about what it’s like to be disabled. It seemed to me that some 

colleagues assumed that I turned into a walking human being when I left the building at 5 p.m. Nice thought. 

Not only did I have to deal with physical limitations, but the mental transition couldn’t be avoided. Decisions

had to be made. My body was failing me, but there was no way my mind was going to follow suit. I had to keep

my wits about me. The support, understanding, and concern of family and friends would be essential to my 

future. As well, my faith kept me grounded. My “why me?” quickly turned into “Why not me?”

I continue to forge ahead and tackle each day’s challenges and obstacles head on. Yes, there will be detours

along the way. That is a given circumstance and also my challenge.

Nicolette Horbach, M.D. American Urogynecologic Society

The American Urogynecologic Society (AUGS) is a medical society composed of over 700 members who 

specialize in providing the continuum of care to women with disorders of the pelvic organs including the diagnosis and treatment of urinary and fecal incontinence, pelvic organ prolapse, infections, and voiding disorders.

Prevalence statistics regarding the number of women suffering from disorders of the pelvic floor are difficult 

to ascertain because of significant underreporting of these conditions.

It is estimated that 50 percent of parous women lose pelvic floor support, resulting in prolapse. Of these

women, only 10 to 20 percent seek medical care for their symptoms. The overall prevalence of all causes of 

urinary incontinence is reported to be approximately 40 percent less. Less than half of the women with incontinence report their symptoms to their health provider, and most wait at least 5 years before seeking care.

The National Center for Health Statistics reports that nearly 400,000 operations are performed annually 

for these conditions. Recent research suggests that women have a 11.1 percent lifetime risk of undergoing a 

single operation for pelvic organ prolapse and/or urinary incontinence.

The estimates regarding the direct costs of urinary incontinence have increased from $10 billion in 1987 

to $16 billion in 1994. Only 4 percent of these dollars is used for the diagnosis and treatment of urinary incontinence; the remainder was spent on management of the problem.

I would now like to share with the Task Force three activities that the American Urogynecologic Society 

feels will help to uncover new knowledge that will improve the health of women with pelvic floor disorders.

The first is to convene an inter-institute working group in the area of pelvic floor dysfunction research.
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The second is to work with NIH to find a mechanism and funding source to support training and 

career development awards for new and young investigators interested in careers in incontinence and pelvic 

dysfunction research.

And the third objective is to assist NIH in developing an RFA in FY 1998 with the intent of funding 

three to five small pilot grants in the area of incontinence and pelvic floor research.

Mary Lloyd Ireland, M.D. Ruth Jackson Orthopaedic Society

Mobility: A Key Ingredient for Enhancing the Quality and Length of Women’s Lives

Women must adopt an active lifestyle if they are to maintain good physical and mental health. Yet there 

are many threats to a woman’s mobility. Societal biases still hamper women’s opportunities to participate in and

enjoy athletic activities. Women’s physical and anatomical differences from men have not been fully appreciated by

coaches and trainers, placing girls at unnecessary risk of pain and injury. As women age, they undergo the special

stresses of mineral-depleting osteoporosis and become vulnerable to many kinds of fractures. Hip fracture represents an especially important risk to women since it has such a serious impact on independence and quality of life. 

Women’s tendency to become less active with age exacerbates their susceptibility to a myriad of health 

problems including obesity, heart disease, depression, and diabetes. Inactive women often become trapped 

in a downward spiral of poor health and immobility. The loss of a woman’s mobility often results, directly 

or indirectly, in her premature death.

Physical activity is a critical element of a healthy and satisfying lifestyle. We must learn more about 

how to promote movement among women, and how to circumvent the social and biological processes 

which threaten their mobility.

Anne Kasper, Ph.D. Boston Women’s Health Collective

Our definition of women’s health includes women’s experiences with their bodies and their sexuality, and their

interactions with the health and medical care system, as well as specific biological conditions or diseases mostly

affecting women. Our purpose is to work in the public interest to empower women by providing them with the

best information available. We support them in making decisions for themselves and their families, with providers

who respect and encourage their participation and responsibility. We have focused on the normal in each lifestage
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and reproductive transition because so much medical information has focused on diseases, or defines normal life

transitions as inherently deficient and unmanageable without medical intervention and surveillance. We research 

and describe nonmedical, self-help approaches and medical treatments, believing that true informed consent

includes both. From the start of our work, we have named race and class, gender, and sexual preference as key

determinants of health and important human rights concerns. We are advocates for women who use the system,

and work with professionals and consumers who organize to change it. We call for greater roles for women in 

governance of a system which impacts them so profoundly, since that system depends on women’s unpaid caregiving labor on behalf of vulnerable and chronically ill family members. We bring a critical lens to the conduct 

of research and the practice of medicine, and actively pursue evidence of treatment effectiveness as essential to

rational decisionmaking. Our scrutiny of the doctor-patient or practitioner-patient relationship has intensified

under managed care since providers working under these plans may no longer be able to give the best advice 

and information. As we work with the media, we bring essential feminist gender analyzes to health issues whose

reality and impact is often distorted by gender-neutral or color-blind approaches, or biased by special interest.

We call on ORWH and NIH to research more intensive methods for dissemination of information about true

determinants of health, normal processes of development across the life span, and the importance of public interest,

evidence-based perspectives in health, and medical decisionmaking. This research would include finding methods

to disseminate the ineffectiveness or potential harm and abuse, and to illuminate ethical issues, as well as reporting the effectiveness of biological research or treatment approaches. We cite examples from maternity care, gene

research, development, and use of medical technology (especially in normal women), diet and exercise benefits,

smoking in girls, the impact of poverty and social class on mortality, women’s overwork in workplace and home

combined, barrier method contraception, and nonmedical approaches to HIV/AIDS care, in order to illustrate how

additional research is needed to examine the impact of research and the implementation of research, on the lives 

of women from a variety of backgrounds. We also call for greater utilization of methodologies already in use, or

piloted recently, such as enhanced Consensus Development Conferences, and the Urban Women’s Health regional

“Report Cards,” in order to come at research issues with greater community perspective and input.

These are some of the issues we feel deserve further research. We would be pleased to work with ORWH 

and researchers in elaborating on these approaches. Thank you for the opportunity to speak before you today.

Marlene Keeling Chemically Associated Neurological Disorders

Research on women’s health for the 21st century must address the issue of silicone implants which includes

toxic chemicals of known neurologic, carcinogenic, and teratogenic effects in relationship to the mothers’ and

unborn children’s exposure
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Exposure to chemical toxins has become an urgent global problem. Much of our knowledge regarding 

neurotoxicity of specific chemicals, in particular, has not been found in the laboratory; but rather has come from 

outbreaks of human neurotoxicological disease due to excessive environmental and industrial overexposures 

as a result of both accident or ignorance. With methyl mercury and PCBs, neurotoxicological illness was not 

restricted to the adult population; children born to exposed mothers also suffered lasting neurological and 

behavioral effects as well.

It is now commonly accepted that the developing nervous system in the unborn child is especially sensitive 

to chemical toxicity. Research on lead, alcohol, methyl mercury, and PCBs indicate that infants and children may 

be at an increased risk of exposure in the womb and during breast feeding.

As we approach the 21st century, I ask the Office of Research on Women’s Health to focus on one source of

probable chemical toxicity that has not been adequately researched. Silicone, silica, and its components have not

only been used in implantable devices but are used in cosmetics, medicine, the food we eat, on the tips of needles,

and in hundreds of other products. It may be found in shampoos, conditioners, lipsticks, bath gels, makeup, and

deodorant that you rub on your skin every day. Research now clearly shows that it is not inert in the body, as 

previously purported by the chemical industry.

With more than 100,000 implanted women having been diagnosed with severe illness, now is the time 

to do the critical research that should have begun 30 years ago.

Some of the serious problems seen in a large number of implanted women include peripheral neuropathy,

demyelinating neuropathy, atypical neurological disorders, cognitive dysfunction, organic brain disorders, and

immune dysfunction. Just like latex is now recognized to cause an allergic reaction, silicone has the ability to 

produce human hypersensitivity in as high as 26 percent of implanted patients as documented by the published

research of Dr. Ira Finegold, current President of the American College of Allergy and Immunology.

We need to have the following questions answered:

• Is silicone, silica, or its components a lipid soluble neurotoxin?

• What part does an allergic hypersensitivity to silicone, silica, or its components play in the incidence 

of chronic illness?

• Does silicone, silica, D4, or other components act as a synthetic estrogen or estrogen blocker?

• Do the reports of increasing cases of multiple myeloma in young women with breast implants indicate 

a cancer latency factor?
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Gwendolyn Puryear Keita, Ph.D. American Psychological Association

On behalf of the American Psychological Association (APA), I would like to commend Dr. Vivian Pinn for 

her leadership on advancing research on women’s health. We would also like to convey our deep appreciation 

for recognition of the importance of psychosocial and behavioral factors in women’s health and the inclusion 

of behavioral and social scientists in the development of the new women’s health research agenda.

We are the largest scientific and professional organization representing psychology in the United States. 

APA’s membership includes more than 151,000 researchers, educators, clinicians, consultants, and students. 

APA’s mission is to advance psychology as a means of promoting human welfare, as a science, and as a profession. APA has a long history of involvement in women’s issues, in particular supporting and encouraging 

behavioral and social science research to address women’s health. 

Despite increased focus on medical and epidemiological aspects of women’s health, research has not adequately addressed psychosocial and behavioral factors that contribute to health status. In May 1994, APA, in 

collaboration with a number of federal agencies and professional organizations, sponsored an interdisciplinary 

conference entitled “Psychosocial and Behavioral Factors in Women’s Health.” The purpose of the conference 

was to highlight the extensive research implicating behavioral and psychosocial factors in a number of major 

chronic diseases and conditions that influence women’s health across the life span.

The “Research Agenda for Psychosocial and Behavioral Factors in Women’s Health” evolved out of the conference. It was developed by the conference advisory committee, which included experts from across disciplines,

institutes, and federal agencies — including the Office of Research on Women’s Health — and represented a 

broad range of women’s health concerns. The research agenda builds on the growing body of knowledge in

women’s health and articulates a set of priorities for the next generation of research studies. 

The research agenda defines research priorities pertaining to specific diseases and health practices that greatly

affect women. The diseases included are those that show high mortality or morbidity rates for women and that 

may cause great physical disability, lowered financial resources, and poorer quality of life. Some of the priorities

delineated support important priorities for women’s health identified at the beginning of this decade in the U.S.

Department of Health and Human Services’ Healthy People 2000.

Our interdisciplinary Advisory Committee felt that a Research Agenda for Women’s Health should be guided 

by the following principles:

• The focus of research should be on understanding how the experiences of groups affect health-related

issues, rather than on simply documenting group differences or differences between women and men.

Women are a heterogeneous group whose experiences may vary with ethnicity and race, marital status,

parental status, education, income, occupation, sexual orientation, labor force participation, and geographic location (e.g., urban vs. rural). 
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• Gender-related psychological, behavioral, and social factors, and their interrelationships with biomedical 

factors, are important to consider in understanding disease and health. Like ethnic status, social class, 

and age, gender is associated with social realities that are different for women and men.

• Psychological and behavioral factors are important predictors of well being, vulnerability to disease, and 

disease outcomes. Research is needed on the psychological factors that influence health, including risk

reduction, coping behavior, self-efficacy, perceptions of control, social support, and depression.

• Quality of life is an important outcome measure and includes a sense of well being, functional health, 

and engagement in the psychological and social world.

• A life span, developmental approach is important in understanding health practices and outcomes. 

The stage of a woman’s life influences behavior and also provides a context within which health-related 

behavior and illness can be understood.

• Contextual factors represent cross-cutting issues that must be considered in designing, implementing, 

and interpreting research results in order to enhance traditional biomedical research and offer new 

insights. Thus, women’s health issues should be studied within the following contexts:

– Relationships: How do women’s relationships affect health status, health behaviors, and health 

attitudes? How do health behaviors, attitudes, and health status affect women’s relationships?

– Ethnicity: How do women’s ethnic backgrounds shape their health, health behaviors, and attitudes?

– Resources: How do financial and structural resources enhance or limit women’s health options?

– Status and power: How do women’s social status, work status, and power within relationships 

limit health options or affect health status?

– Gender expectations: How is health status affected by gender expectations for mothering/primary 

parenting and caregiving for others who are sick or in need; expectations to serve as an emotional 

support system for others; and expectations for housework and other household tasks.

Our research agenda was developed with these factors in mind.

In closing, we propose that ORWH use our research agenda as the foundation upon which ORWH builds 

its new research agenda. This would avoid duplication of effort and enable women’s health researchers, federal

agency personnel, and policy makers to most effectively address women’s health research and would go a long 

way in furthering the much-needed federal commitment to improving the health of America’s girls and women.

Copies of the research agenda are readily available for your use.

Thank you again for the opportunity to participate in this hearing and for your leadership on research 

on women’s health.
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Ann Kolker Ovarian Cancer National Alliance: Ovar’coming Together

I am Ann Kolker, a founder and board member of the Ovarian Cancer National Alliance: Ovar’coming Together.

The Alliance, formed last spring, is the creation of leaders from the growing number of ovarian cancer groups

across the country. These groups united to establish an umbrella group, the Alliance, because they believe that it 

is essential to have a coordinated effort that will put ovarian cancer policy, education, and research issues squarely 

on the agenda of national policymakers and leaders in women’s health. This conference is our public debut.

I have a straightforward message: it is urgent that researchers, clinicians, and policymakers dramatically 

expand awareness of, and resources devoted to, ovarian cancer with the goal of significantly improving early 

detection. The tragedy of ovarian cancer is that more than 50 percent of the women who have it die within 5 

years of diagnosis because the vast majority of women are not diagnosed until the cancer has reached late stage, 

when it is too late to cure. 

There are, of course, several reasons for this serious state of affairs. One is that awareness of ovarian cancer 

in the medical community is limited. Because it is not a common disease — affecting only one in 55 women — 

it is not “on the screen” of many primary care doctors who first see women who report abdominal discomfort,

bloating, bleeding, or some of the other common symptoms. Gaining the attention of the medical community

about ovarian cancer is a top priority of the Alliance. Another concern is that many at-risk women are unaware of

symptoms, which are often subtle, and not unique to ovarian cancer. Thus, another Alliance priority is to educate

women about this disease so that when symptoms occur, women request appropriate testing. The third problem

that dooms so many women to late-stage diagnosis is the imperfect status of diagnostic tools and the absence of a

simple, cost-effective, and reliable screening mechanism for ovarian cancer. This is where many of the researchers,

clinicians, and policymakers here today can help the ovarian cancer community the most. An immediate Alliance

priority is the development of a screening mechanism, as simple and accessible as the Pap smear or mammogram.

We urge those of you here today to make this a top priority too, and to urge colleagues to do the same. Until 

such a screening device is available, early stage ovarian cancer will continue to be missed too often and many 

thousands of women will continue to die needlessly.

Despite the many new life-saving therapies developed in recent years, and the infusion of new funds designated for ovarian cancer research, much more research must be done to gain a better understanding of key 

aspects of this disease to dramatically improve the survival rate. We urge that as the women’s health research 

agenda for the 21st century is set by this conference, the compelling needs of ovarian cancer be given top 

priority. The 183,000 women currently living with ovarian cancer, our sisters, daughters, and granddaughters, 

and the millions of at-risk women around the country look to your leadership and support.
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Virginia T. Ladd, R.T. American Autoimmune Related Diseases Association

Dr. Pinn and representatives of the Office of Research on Women’s Health (ORWH) at the National Institutes 

of Health (NIH), my name is Virginia Ladd and I am the Executive Director of the American Autoimmune Related

Diseases Association (AARDA). AARDA is the nation’s only organization dedicated to raising awareness of early

warning signs of autoimmune diseases and promoting collaborative research efforts to cure autoimmunity. I appreciate the opportunity to testify about the need for the women’s health community to increase its focus on the 

category of over 80 chronic autoimmune diseases, which target women about 75 percent of the time. ORWH

would serve the health needs of American women by making autoimmunity a central priority of its agenda. 

This testimony will focus on two related areas. First, I will discuss autoimmunity as a women’s health issue,

with a focus on the problems women frequently experience as a result of delay in correctly diagnosing an autoimmune disease. Second, I will address the need to understand autoimmunity as a category of diseases, like cancer, 

as well as the need to conduct collaborative research on autoimmunity — the common link to many chronic 

diseases which are currently independently treated and studied.

Autoimmunity Is a Major Health Issue

Autoimmunity is a debilitating condition in which the immune system attacks the body’s own tissues or cells.

Autoimmunity is the root cause of over 80 serious, chronic diseases including connective tissue diseases such 

as lupus (inflammation of connective tissue), rheumatoid arthritis (joints), and scleroderma (skin); neuromuscular

diseases including multiple sclerosis (nervous system); and endocrine diseases including Graves’ disease/hyperthyroidism and Type I (insulin-dependent) Diabetes. The entire family of autoimmune diseases affects an estimated 

50 million Americans, and the cost of treating these chronic conditions is estimated at $86 billion annually.

In September 1997, the Journal of Clinical Immunology and Immunopathology published a study, conducted with

AARDA’s support, that examined the prevalence and incidence of 24 autoimmune diseases. The study estimated

that over 8.5 million Americans suffer from one of these 24 diseases. Moreover, the researchers found that almost

240,000 people develop one of the 24 diseases annually. Graves’ disease is the most prevalent of the diseases

included in the study — about 1,152 per 100,000 people. Rheumatoid arthritis (about 24 per 100,000) and 

thyroiditis/hypothyroidism (22 per 100,000) were the diseases with the highest incidence rates. 

Autoimmunity Is a Major Women’s Health Issue

As the Office on Women’s Health at the Public Health Service recognized when it focused on autoimmunity 

during its Healthy Women 2000 conference in Washington last year, autoimmunity is largely a women’s health 

problem. Autoimmunity usually strikes a woman during childbearing years and some research may suggest a 

link between a woman’s heightened hormonal activity during this life period and autoimmunity. Indeed, autoimmune reactions may be responsible for about 60 percent of infertility problems, creating additional physical 

and emotional burdens associated with reproductive difficulties.
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Taken together, autoimmune diseases represent the fourth largest cause of disability among women in the 

United States. Autoimmune diseases strike three times as many women as men, and the female:male disparity 

is even greater for some individual autoimmune diseases. For example, the female:male ratio for Hashimoto’s 

thyroid disease is 50:1; for lupus, Graves’ disease, and chronic active hepatitis, the ratio is approximately 9:1.

Autoimmunity is known to have a genetic component, and tends to cluster in families as different diseases — 

a mother may have lupus; her son, juvenile diabetes; her sister, antiphospholipid diseases; and her mother, rheumatoid arthritis. Moreover, people with autoimmunity often experience more than one autoimmune disease. AARDA

commends ORWH for its recently announced collaboration with other institutes at NIH — including the National

Institute of Allergy and Infectious Diseases, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the National Institute of Diabetes and Digestive and Kidney Diseases, and the National Institute on Aging — 

to fund a 5-year grant for basic preclinical research on the genetic susceptibility to autoimmune diseases. 

For many women, getting a proper diagnosis for an autoimmune disorder proves as difficult as living with the

disease itself. Several factors contribute to misdiagnosis or late diagnosis which delay proper treatment. Symptoms 

of autoimmunity vary both among the different autoimmune diseases and within a particular disease. The symptoms may come and go, and may be difficult for a woman to describe with precision to her physician. And the

impact of autoimmunity on more than one body system can impede and confuse diagnosis.

The physical and psychological toll of misdiagnosis and late diagnosis for sufferers of autoimmune diseases 

can be substantial. In the first place, of course, no early diagnosis means no early treatment. Significant tissue or

organ damage can occur during the time lag in pinpointing an autoimmune disease, worsening the chronic and

painful health burden that a patient will bear for the rest of her life. 

The psychological impact of late diagnosis may also be devastating. The difficulty in identifying symptoms 

may result in a physician not taking the patient’s complaints seriously. A survey conducted by AARDA found that 

over 65 percent of patients with autoimmune diseases have been labeled hypochondriacs in the earliest stages of

their illness. Thus, the undiagnosed autoimmune patient may struggle with self doubt, even questions of sanity,

during the years it may take to obtain a correct diagnosis. Furthermore, the multiplicity of symptoms and affected

body systems may cause the patient to endure a long series of unsuccessful tests and procedures from a range of

specialists attempting to diagnose the problem. Kelly Ripken, wife of Cal Ripken, Jr. of the Baltimore Orioles, had 

a typical experience. She was examined by five specialists over several years before she was correctly diagnosed

with Graves’ disease. 

The problems in obtaining a timely, accurate diagnosis of autoimmunity overwhelmingly affect women, who

represent approximately 75 percent of all autoimmune patients. ORWH is well positioned to take a leading role 

in organizing a concerted education and research campaign to improve recognition and early testing for autoimmune diseases, and in promoting basic research into autoimmunity, the root cause of all of these diseases. 
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Discovering the Root Cause for All Autoimmune Diseases Depends on Basic Research

As indicated above, the problems with timely recognition and diagnosis of autoimmune diseases partly result

from the fragmented way in which the medical community approaches autoimmunity. Unlike cancer, which is an

umbrella category for a range of diseases (e.g., breast cancer, leukemia, non-Hodgkin’s lymphoma, etc.), autoimmunity has yet to be embraced by the medical community (and the public) as a category of disease. Autoimmune

diseases fall into such disparate areas as rheumatology, endocrinology, neurology, cardiology, and dermatology; 

consequently, there has been no general focus on autoimmunity as the underlying cause.

Our efforts to encourage greater communication and coordination among different parts of the research 

community working on autoimmune disorders has borne some fruit. This year, both the House and Senate appropriations subcommittees with jurisdiction over NIH have urged the NIH Director to explore the creation of an

autoimmune coordinating body to “improve the use of existing research funds and facilitate the application of

important findings among the many research programs dealing with autoimmune diseases” at NIH. Additionally, 

it is encouraging to see the cooperation of four institutes and ORWH with respect to the grant for research into 

the genetics of autoimmunity, the role of co-stimulation of immune cells, and the mechanism of induction, 

perpetuation, and injury caused by the autoreactive response.

These steps indicate progress, but they alone are not enough. ORWH has a substantial opportunity to increase 

the visibility and focus on autoimmunity as a common cause of diseases that disproportionately affect women.

AARDA strongly urges ORWH to push for collaborative efforts to conduct basic research that would bear fruit 

for all autoimmune diseases, rather than continuing to focus more narrowly on individual diseases. 

There have been exciting breakthroughs in research focused on new treatments for autoimmune diseases,

notwithstanding the dearth of basic collaborative research into the root cause of autoimmunity. For example, 

new treatment modalities, such as oral tolerization, have shown promise for several autoimmune diseases across 

clinical categories. Such success in treating multiple diseases underscores the common link among the different 

diseases, and should encourage the next phase of autoimmune research: basic research to discover the root 

cause of autoimmunity. Basic research will yield information that benefits the treatment and diagnosis of all 

autoimmune diseases and represents the most promising approach to finding a cure.

Conclusion

ORWH, perhaps more than any other office or institution, has the capability to substantially improve 

our country’s approach to autoimmunity. Efforts to channel additional resources to basic biomedical research 

on autoimmunity will encourage the coordination of currently fractured research efforts. Such collaboration 

will also promote the increasingly supported view that autoimmune diseases are connected by common 

threads. Furthermore, such research efforts will concurrently stimulate greater awareness and knowledge 

of autoimmunity among the medical community and the public, thereby aiding early diagnosis and treatment. AARDA urges ORWH to seize this timely opportunity to address one of the leading and most vexing 

health problems facing American women. 
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Mary Lamielle National Center for Environmental Health Strategies, Inc.

Thank you for the opportunity to testify before the Office of Research on Women’s Health, Bethesda, 

Maryland, November 17, 1997.

My name is Mary Lamielle. I am director of the National Center for Environmental Health Strategies, Inc.,

based in Voorhees, New Jersey. The Center is a national not-for-profit membership organization fostering the 

development of creative solutions to environmental health problems with a focus on indoor pollution, chemical 

sensitivities, and environmental disabilities. Founded in 1986, the Center has become a preeminent source 

of public information, educational materials, and technical support and input on research to the government 

on environmental illnesses including sick building syndrome, chemical sensitivities, Gulf War syndrome, and 

related disorders.

We have been the pathfinders in the area of multiple chemical sensitivities (MCS): initiating the New Jersey

study of chemical sensitivity by Nicholas Ashford and Claudia Miller; testifying before Congress on the Indoor 

Air Quality Act on three occasions; securing HUD recognition of multiple chemical sensitivities as a physical 

disability; and ensuring that guidelines under the Americans with Disabilities Act address this issue. I also worked 

to secure the first Congressional funding for research on MCS and served on all subsequent research panels.

For a dozen years, we have assisted and tracked those sick or disabled by low-level chemical exposures 

at home, at school, at work, and in the community. We typically receive hundreds to as many as a thousand

requests for information a month from individuals who suspect that they have been injured by low-level 

chemical exposures, or who have developed MCS subsequent to such an exposure event.

Patients most frequently report an initiating event such as a pesticide application, new carpet installation,

remodeling activities, solvent exposures, inadequate ventilation, or poor air quality. Following this exposure event

the patient will find, over time, that she reacts to more and more different substances and products at lower and

lower exposure levels. Clusters of symptoms will be triggered on a day-to-day basis upon exposure to a diverse

array of common substances and products including pesticides, perfumes, auto and diesel exhaust, tobacco 

smoke, air fresheners, deodorizers, dry cleaning fluid, hair spray, and other personal products, just to name 

a few. Those patients who cannot remove themselves from such exposures will generally find that their health

declines rapidly, and that they experience significant levels of illness and disability.

Based on a number of government and university-based studies, it appears that number of individuals 

reporting sensitivity to everyday chemical exposures is on the rise, with women reportedly outnumbering 

men in such surveys. Little research has been done to help us understand the phenomenon, address the health 

issues for those who report chronic illness and disability, provide treatment protocol, or protect public health.

Over a decade ago, in July 1987, the Board on Environmental Studies and Toxicology at the National Academy

of Sciences held a workshop to examine indoor pollution and chemical sensitivity. Experts at this workshop issued a

now famous, off-the-cuff estimate that “approximately 15 percent of the U.S. population have an increased allergic
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sensitivity to chemicals commonly found in household products, such as detergents, solvents, pesticides, metals,

and rubber, thus placing them at increased risk to disease.” The consensus from the meeting — further research is

needed to examine the extent of this public health problem and the role that indoor pollutants, particularly from

consumer products, play in promoting chemical sensitivity. Despite this auspicious beginning, the first governmentsponsored workshop on MCS was not held until 3 years, 8 months later. It took directed Congressional funding

and another 2 years until the Agency for Toxic Substances and Disease Registry created an expert panel and convened a neuroscience workshop in Baltimore. To date, little research has taken place to illuminate this issue.

Meanwhile, industry, segments of the medical community, and insurance companies are among those groups

who have been and remain tremendous obstacles to investigating and acting on MCS. They have succeeded in 

creating a hostile environment for patients who must frequently depend on the goodwill of family members,

friends, and society to meet their overwhelming needs.

A research agenda to investigate multiple chemical sensitivities and related disorders is long overdue. I would

urge you, on behalf of our membership and those in the United States and around the world suffering with this

devastating problem, to examine the compelling needs of those disabled by MCS, and to assign the highest priority

to this significant and growing public health problem. If the apparent rise in MCS patients is accurate, progressive

loss of tolerance for everyday chemical and environmental exposures may have profound consequences for the

public health and society.

Marian C. Limacher, M.D. American College of Cardiology

Unanswered Questions About Heart Disease in Women

Coronary heart disease (CHD) is the leading cause of death in American women. While not comprehensively

studied over previous decades, information now exists about risk factors, diagnosis, management, and prognosis 

for women with CHD. Differences between men and women are evident in many aspects of the CHD spectrum of

evaluation and outcomes. For some increases in mortality, differences have been shown to be related to increased

levels of other features that impart higher risk, including older age, more advanced disease, and more concomitant

diseases, rather than gender-specific factors. Some reports suggest bias in decisionmaking when diagnosing or 

treating women. Much more information is needed to determine the sources of differences and the adjustments

needed to improve the outcome of women with CHD.

Topics recommended for further research include: assessing risk factor intervention (particularly diabetes); 

primary prevention of CHD with cholesterol-lowering agents with consideration of the potential interaction with

hormone replacement therapy; programs to improve health behaviors, in general, and programs designed to 

reduce teenage smoking and increase physical activity, in particular; treatments for obesity and their impact on

CHD; algorithms for diagnostic testing; studies to assess optimal therapy for men and women to eliminate biases 
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and produce evidence-based guidelines; studies on survival of myocardial infarction; assessing appropriate 

dosing of new agents for women and men; and studies to assess the impact on aging vs. gender on diagnostic 

and therapeutic decisions and in assessing outcome.

Lisa Lindahl Epilepsy Foundation of America

Good Afternoon. I am Lisa Lindahl and I am here today representing the Epilepsy Foundation of America

(EFA). I am the Chair of the Foundation’s Women and Epilepsy Initiative and a member of the Board of Directors. 

I appreciate the opportunity to provide input to the NIH Office of Research on Women’s Health on developing 

a research agenda for the 21st century. 

I am submitting to you a brief EFA statement which discusses women’s health research needs and epilepsy. 

I urge you to incorporate these recommendations into the report you will be developing. We hope that this report

will help drive the momentum to double the overall funding for NIH. EFA and other voluntary health agencies

advocate for increased societal commitment to funding medical research in order to meet the many existing basic

and clinical research needs and opportunities.

I will not spend my time this afternoon reviewing the EFA statement we are submitting. Instead, I wish 

to use this time to talk to you as a woman with epilepsy who is giving a voice to the over one million other 

women in the United States who have epilepsy. 

We are a group in critical need and without sufficient attention. Our lives will remain vulnerable to a 

host of serious consequences if left ignored.

Dramatic? Yes, but true nevertheless!

Let me first say that all people with epilepsy face many challenges. To a significant degree, these challenges 

have little differentiation due to gender. However, what has not been widely understood is the role the female 

hormonal cycle plays on these differences.

Greater understanding is the essential first step! Parity in women’s health care effects all women. Women 

have rallied behind greater research efforts for breast cancer and for heart disease. It is now the time for greater

research efforts for women with epilepsy.

What are some of the issues that such a focus could explain? I will briefly outline a few:

• Will the onset of menses affect the type or severity of a girl’s seizure disorder?

• Is fertility affected at all?
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• Can women with epilepsy have safe pregnancies? Healthy babies? Should they breast feed?

• Is the effectiveness of anti-epileptic medication impacted by a woman’s hormonal fluctuations?

• Does medication work the same way on women as it does on men?

• What happens as menopause begins and progresses?

• Are there any interactions between anti-epileptic medications and the therapies prescribed for menopause? 

I am sure you will agree these are reasonable questions and I am sure you will not be surprised that we do 

not have a extensive scientific body of knowledge to answer all these questions. Without the scientific information 

in this area, we are left with guesswork.

This is not a “new” problem. Epilepsy, or the “falling sickness” as it was known in ancient times, is one of the

earliest disorders to be chronicled. As I understand, the first documentation of a seizure pattern unique to women

was made in the late 1800s. A Dr. Gowers, in 1881, reported that about half of his female patients seemed to have

more seizures before or during their menstrual cycle. Nothing more appears in the literature until 75 years later

when a paper by Dr. Laidlaw, in 1956, described “catamenial epilepsy” — a prevalent pattern in women of hormone-sensitive seizures. No further inquiry was made until the 1980s, nearly 30 years later. 

So, beginning in the 1980s, a few brave and curious souls began to do research. One researcher even used 

hormones to control seizures in some women. Although the work truly began in the 1980s with a few talented

researchers, the surface was hardly scratched. What is critically needed is a complex and far-reaching field of

inquiry. We must not allow another century to pass.

No, we must not allow more time to pass without listening to the needs and voices of real women with 

real issues... epilepsy issues. The quotes that follow are real. The first comes from Darlene.

I had my first seizure just after I found out I was pregnant. I miscarried the baby. My husband blames me 

for losing the child, even though intellectually he know it’s not my fault. It has paralyzed our relationship... Epilepsy is 

not a disease, it’s a disaster. — Darlene 

AND

from Jane we hear...

I live with the agony of my seizure disorder every day when I see what is has done to my child. I feel like I can’t 

even ask my husband to take on much responsibility for caring for our child because what happened is my fault. I can’t 

help but feel guilty, even if it’s not by fault. (This is in reference to her 12-year-old child who was born with congenital 

birth defects; allegedly a result of her anti-epileptic drugs.)
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You have heard from Darlene and Jane, now I want to share some of my story. I was diagnosed with absence

seizures at the age of 3. The rest of my history is similar to many I have heard since working with the Epilepsy

Foundation: First convulsion at puberty; fear regarding childbearing due to faulty and/or no information; a long 

bout with serious overmedication; lack of any physician recognition regarding the apparent difference in my 

ability to tolerate “typical” therapeutic levels of anti-epileptic drugs (AEDs); personal choice for undermedication 

and use of lifestyle management control; lack of physician recognition of my seizure pattern as it related to my 

hormonal cycle; and now, my current challenge is being perimenopausal and not knowing what that may mean 

in terms of the on-going quality of my life and my ability to lead a fairly productive one.

These are just a few stories. Countless other stories of women with epilepsy are left behind in our files, 

waiting to make sense of their stories — waiting for answers. 

In conclusion, let me reiterate what I said at the start. I am taking a turn today being the voice of the over 

one million women in this country who have epilepsy. Collectively, we urge you to start the process that will 

result in women receiving accurate data, informed medical care, and increased quality of life. Do the research. 

Institute the testing programs. Find the answers. Develop the solutions.

I encourage you to move forward with a sense of urgency. The help we need will take a long time to discover,

develop, and disseminate. We need to focus our energy on those girls and young women of today so that they 

may have a chance to be spared the discrimination, anguish, fear, and insufficient medical choices to properly 

guide their life.

Toward A Women’s Health Research Agenda

The Epilepsy Foundation of America has had a longstanding commitment to research and has recently 

focused efforts on advocacy to promote more research on women’s health issues. Specifically, EFA has established 

the Women with Epilepsy Initiative (WEI) to advance the cause of further research, to guide diagnosis, enhance

clinical care, and improve the quality of life for women who have seizures. As new information is gathered 

through scientific investigation, strategies for improving the quality of life of women with seizure disorders 

may be effectively implemented.

More than one million women and girls in the United States have epilepsy (seizure disorders). Seizures and

exposure to AEDs may alter female reproductive function and may have a negative effect on pregnancy and reproductive health. For instance, women with epilepsy are at greater risk for pregnancy complications, while fetal 

exposure to AEDs increases the risk of birth defects. Efficacy of hormonal contraceptives may be compromised 

by interactions with drugs to control seizures. Recent studies show that fertility is lowered and sexual dysfunction

affects nearly one-third of women with seizure disorders. Complicating these concerns, many women with epilepsy

are seen by health care professionals who are unfamiliar with these unique issues. A lack of research in this area

compounds the problem. In addition, very little research has been done on behavioral and psychosocial aspects 

of epilepsy for women which effect quality of life.
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Identifiable Advances in Women’s Health Research and Epilepsy

Although research on women’s health issues unique to women with epilepsy is very limited, a basic body 

of knowledge has been developed. Research has established:

• a clinical relationship between hormones and seizures — hormones effect epilepsy and epilepsy effects 

hormones, and that there is a relationship between hormones and seizures at puberty, over the menstrual

cycle, and at menopause;

• women who have epilepsy experience sexual dysfunction more often than women who do not have 

epilepsy;

• fertility may be compromised and the higher failure rate of contraceptives in women taking AEDs effects 

a woman’s ability to plan her family;

• risks during pregnancy are significantly greater for women with epilepsy than the population-at-large 

and include risk of maternal injury during seizure, risks to the fetus caused by teratogenic anti-epileptic

drugs, ruptured membranes, preterm delivery, and even fetal death;

• women with epilepsy face a constellation of behavioral and social adjustment problems including 

parenting, employment, and depression, among others.

Despite basic knowledge in some of these areas, we do not yet know how the research findings that are available may be utilized for effective treatment, leading to improved quality of life for women with seizure disorders.

Barriers to Conducting Outcomes Research in the Field

While the federal government, industry, private foundations, and individual donors devote funds to support

epilepsy research, very little funding is targeted to examine women’s health issues specifically. Drug trials have 

traditionally not included women with epilepsy, and thus, clinical efficacy and problems with side effects are not

evaluated prospectively. An epidemiological basis of understanding about women with seizure disorders is needed 

to establish a sound understanding of the population as a whole and to gather information about subgroups and

subcategories of experience with seizures, seizure management, and women’s health — such an epidemiological

basis is not currently available. A national database is needed on pregnancy, birth, and infant outcomes of women

with seizure disorders.

More funding, inclusion of women of all ages in core research, and in-depth baseline data are very much 

needed to proceed with carrying out a meaningful outcomes research agenda.
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Area(s) in the Field That Need Further Examination

Numerous areas require extensive research:

• Birth outcomes: issues around teratogenic drugs and pregnancy must be explored to address the 

serious problems of infant mortality and birth defects; we currently do not know enough about 

the association between folic acid and decreased risks of serious birth defects, or actual outcomes 

from folate use;

• Reproductive health: incidence of reproductive endocrine disorders in women with epilepsy must 

be examined, including concerns about anovulatory cycles and polycystic ovarian disease; impact 

of this on general health, such as cardiac functioning and other metabolic issues, are poorly elucidated or understood;

• Family planning/contraception: increased risk of contraceptive failure (of hormonal contraceptives) 

needs examination; need to understand if contraceptives effect seizure control;

• Hormone replacement therapy: need findings to establish relative risk-benefits of HRT for women 

with epilepsy;

• Bone health: poorly understood in women with epilepsy, especially with regard to usage of antiepileptic drugs;

• Hormone-to-seizure/seizure-to-hormone relationships: need to understand reasons for changes in 

seizures and seizure control at puberty, during the menstrual phases, and at menopause;

• Behavioral and psychosocial issues: impact of epilepsy on factors of neuropsychological functioning 

and independent living must be examined more thoroughly including learning, memory, depression, 

employment, and parenting, among others.

It is important to the overall research agenda for women’s health and seizure disorders to be interdisciplinary. Geneticists, molecular scientists, endocrinologists, neurologists, obstetricians, and gynecologists are 

among the key participants in a comprehensive, interdisciplinary research process. Collaborative efforts and 

synthesis of findings are essential to integrate the research across many relevant disciplines.

With a sound research base in place, we will have more opportunity to ensure women with epilepsy 

are healthy mothers, have healthy babies, and have an improved quality of life.
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Randall McCoy CareTrends Health Education and Research Institute

Background and Rationale

The population in the United States continues to grow and age.1 With increases in the elderly population, 

the humanistic and economic costs of chronic diseases are escalating at astounding rates.2 Several diseases 

are particularly prevalent in the elderly including cancer, heart disease, and osteoporosis.3 The most effective 

intervention for these diseases are preventative measures. All of these diseases result in morbid and often fatal 

complications. In order to delay or prevent the complications associated with these progressive diseases, very 

costly therapeutic interventions must be implemented. Osteoporosis is a very costly disease that can be prevented/

treated with early intervention and diagnosis. Therefore, early diagnosis and prevention of osteoporosis should 

be at the forefront of health care. 

Osteoporosis is Prevalent

The prevalence of specific diseases varies in the population. Occurrence of breast cancer is 7 percent, 

prostate cancer is 8 percent, diabetes is 6 percent, and heart disease is 28 percent of the total population. 

Osteoporosis occurs in 37 percent of the population in which one-third of those with osteoporosis are men. 

In the 1990s, an annual estimate of 2.5 million hip fractures and 5 million vertebral fractures resulting in pain, 

disability, loss of independence, and 375,000 deaths is occurring due to osteoporosis.3 This will increase as 

the elderly population continues to grow. At present, the risk for a 50-year-old white woman to have a fracture 

related to osteoporosis is 30 to 40 percent.4 Therefore, osteoporosis is a predominant, devastating disease in 

the United States.

Osteoporosis is Costly

Osteoporosis has a profound, negative impact in the economic domain along with being devastating to its 

victims’ quality of life. Costs are currently more than $20 billion per year, with a projected cost by the year 2010 

of $60 billion.3,5 Due to the age of persons being treated for osteoporosis, the majority of funding for treatment

comes from publicly financed health care programs. Costs include treatment for fractures, acute-care hospitalization, and rehabilitation. Complications following fractures, such as deep vein thrombosis, pulmonary edema, congestive heart failure, and pneumonia, further add to the costs. In addition, 49 percent of males and 54 percent of

females on Medicare with osteoporosis-related hip fractures are discharged from the hospital to skilled, long-term

care facilities.6 In a Medicare study, 25 percent of persons in long-term care with hip fractures had been there for 

1 year after the fracture.7 Furthermore, osteoporosis is the leading contributing factor in the premature death of

older women. Thirty-three percent of the women who suffer hip fractures will die within 2 years of the fracture.2

Thus, the impact on health care utilization and humanistic costs are enormous. 

Other costs of osteoporosis in the humanistic realm include functional limitations, reduced quality of life, 

loss of independence, and inability to work.2 Many women with advanced osteoporosis report a loss of self 

esteem. Clothes no longer fit correctly and buying new clothes to fit properly can become difficult. The victims
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report they can no longer reach items on the upper shelves in the grocery store or in their kitchens and can no

longer see over the steering wheel to drive. Women with advanced osteoporosis often experience shortness of

breath due to reduction in the size of the thoracic cavity as the spine collapses and the rib cage comes to rest on 

the pelvic bone. This “compression” of the abdomen impacts negatively on the function of the digestive system 

and often results in constipation. Furthermore, not only does osteoporosis shorten the lives of many women, it 

turns their golden years into years of tragedy. Loss of independence leads to being forced to move from their

homes. Often, the move results in loss of contact with their support system of family and friends. In addition, 

many elderly will spend the remainder of their lives in an environment they did not choose or want for a residence.

Therefore, the staggering economic and social cost of osteoporosis places a heavy burden on the health care system.

Osteoporosis is Easily Detectable

No dependable tests are available that can predict who will develop cancer or heart disease in individuals as

they age. Unlike heart disease or cancer, osteoporosis can be detected early in its existence by a simple x-ray test

known as a Dual Energy X-ray Absorptiometry (DEXA) scan that is extremely accurate.8 Furthermore, osteoporosis 

is not a disease of the aging exclusively but begins much earlier in life. Evaluation of bone mass at menopause at

the hip, spine, and wrist can predict who will develop osteoporosis later in life with a high degree of reliability.

Identified individuals at high risk for osteoporosis can receive nutrition, exercise, and lifestyle interventions 

which will delay or prevent osteoporosis development.3

Osteoporosis is Preventable

Variations of bone mass accumulation during childhood and adolescence are an important component as a 

risk factor of developing osteoporosis later in life. Increasing bone mass in childhood and adolescence through 

education and intervention can be one of the key components to osteoporosis prevention.9 Screening of young

adults must be done to identify those persons requiring intensive intervention to prevent osteoporosis complications in the future. 

Nutrition is one of the major factors in the prevention of osteoporosis. Adequate calcium and vitamin D 

intake in children and adolescents are necessary for increased bone mass.10 One researcher has estimated that 

the risk of fractures at age 70 could be doubled by low calcium intakes in the first 30 years of life.9 In addition, 

a significant body of research exists to demonstrate that women who have received adequate nutrition, particularly

calcium and vitamin D, have a lower rate of osteoporosis.3 Other nutritional factors can affect bone mass. Excessive

amounts of salt and animal protein increase bone loss and should be avoided.11,12 Therefore, intensive nutrition

education and intervention are mandatory and should contribute to osteoporosis prevention. Lifestyle is an additional factor in osteoporosis prevention. In children, a positive association exists between physical activity and 

bone mass affecting skeletal mass later in life.13 Exercise can also reduce bone loss in older women.14,15 Exercise

must be weight bearing or strength and resistance training.3 Therefore, exercise education is essential to prevent

osteoporosis. Other lifestyle aspects that affect bone health are smoking and excessive alcohol intake. Smoking 

cessation education and intervention is obligatory.3 Furthermore, excessive alcohol consumption contributes 

to decreased bone mass.16 Lifestyle changes must be included in osteoporosis prevention.
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Osteoporosis is Treatable

Pharmacological therapy is used to treat osteoporosis. The therapy of choice is hormone replacement therapy,

specifically estrogen. Estrogen therapy at menopause has been proven successful in maintaining bone mass, for the

majority of women, for the duration of the therapy. However, as soon as estrogen therapy is withdrawn, loss of

bone mass will resume. There are other FDA-approved therapies for osteoporosis. At least one of these approved

therapies has been shown to effectively protect bone mass. In addition, in many patients, medications from the 

bisphosphonate class will increase bone mass by 5 to 7 percent.17 Thus, in addition to behavioral modification, 

there are a number of effective pharmacologic agents available for the treatment of osteoporosis. Compliance with

medication treatment is not reliable. While estrogen therapy has been the treatment of choice for osteoporosis, 

only 15 percent of women who are prescribed estrogen continue to take the hormone 12 months after the initial

prescription is filled. Very little data exists describing the rate of compliance for other agents used for osteoporosis

treatment. Due to inherent difficulties with the bisphosphonates, further study is necessary to evaluate the compliance with medication regimens. 

Osteoporosis Data are Needed

Currently, no ongoing, long-range program exists to determine bone mass in premenopausal women and, 

in particular, female teens. Studies are required to determine the need for therapies to stabilize bone mass in young

women who may have seriously depleted skeletal mass. Dietary surveys in the United States report decreased calcium intake in adolescent females. This population does not consume the recommended daily allowance for calcium

at a time when their need for calcium is high. In addition, teen pregnancies produce added need for calcium which

is not being met with sufficient calcium intake. These factors, at a young age, contribute to low bone density as

women age which leads to increased fractures.18,19 Similarly, little is known about the adolescent development of

the male skeleton and to what extent risk factors such as poor diet, lack of exercise, and smoking have on skeletal

mass in the general male population. Bone mass measurements are not routinely done in men unless there is an

underlying disease state or they are on a therapy that would warrant monitoring of bone mass. While osteoporosis 

in men is increasing with longer life spans, there is little data to support theories that men have higher levels of

depleted bone mass than traditionally has been thought.20 Baseline data is needed on the prevalence of low bone

mass in males between 20 and 50 years of age and from 51 and beyond. Given the prevalence of the risk factors 

in the general population, osteoporosis is, and will continue to be, a major public health problem and a much

greater problem than generally is recognized. We have reached this conclusion for several reasons. We have been

involved in a clinical trial of a drug thought to be effective in the treatment of women with osteoporosis and established vertebral compression fractures. Approximately 4,000 women have been screened since mid-October, 1996 

in the northern Plains states of Montana, Wyoming, North and South Dakota, portions of northeastern Nebraska, 

and northwestern Iowa. Women between the age of 55 and 80, who have no previous history of cancer and are

currently taking no other medications for osteoporosis, are eligible for screening. Women who qualify for the study,

based on health history, receive a DEXA scan of the lumbar spine and hip to determine if bone mass is equal to or

more than two standard deviations below the young normal. If so, x-rays are taken of the spine to determine the

presence of at least one compression fracture defined as a 15 percent deformity. At several of the screening sites,
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nearly 70 percent of the women receiving DEXA scans have qualifying bone mass. Approximately two-thirds 

of that number have qualifying fractures and osteoporosis.

The women with low bone density and spinal fractures, who are otherwise asymptomatic and have sought 

no medical treatment for their osteoporosis, may not truly represent the population of women in that age group 

in the region. However, the level of incidence is sufficiently high in this group to call into question the prevalence

of osteoporosis in the general population of women in this age range. Since most of the drug studies for treatment 

of osteoporosis in postmenopausal women exclude women with prior history of cancer, no matter how much 

time has passed since the disease occurred, little to nothing is known about the status of bone mass in that 

specific population. 

In the earliest recruiting efforts for the clinical trials, bone scans were offered to women of any age in order 

to heighten awareness of the study and to encourage younger women to bring their mothers, aunts, and grandmothers to the osteoporosis screening. While the number of premenopausal women scanned was small, the results

were alarming. We demonstrated a trend to indicate that the number of women in the population with low bone

density may be higher than originally thought, due to the prevalence of many risk factors such as excessive 

smoking, alcohol consumption, lack of regular exercise, and poor diet.

Given the diversity in the population being scanned, there is great concern that the incidence of osteoporosis 

in the general population is much greater than current estimates. Furthermore, there is a paucity of data on the

incidence of low bone mass in the premenopausal population. As far as is known, no provider will pay for a baseline DEXA scan in premenopausal women or in younger men, even where there is a strong family history of the

disease. Therefore, we propose a national, longitudinal osteoporosis project to identify persons at risk for the 

disease and provide health education to decrease the prevalence of osteoporosis.

Objectives and Specific Aims

The status of bone mass and skeletal health in the United States must be addressed more vigorously. Osteoporosis is a major public health problem today and is certain to grow in the future. There is the potential to save

billions of dollars in health care costs if a proactive approach to prevention and early treatment is taken. However,

there is insufficient data to determine the magnitude of the problem in the population. In addition, little is known

about the impact of preventative measures taken by young adults which may drastically reduce the likelihood of

developing osteoporosis and paying the high economic and humanistic costs in their later years of life. Therefore,

the overall, long-term goal of our program is to provide screening and health education to the general public to

decrease the prevalence of osteoporosis. The specific aims of this proposal are to:

• develop accurate epidemiological information on the number of men and women of various ages 

in the United States who have clinically significant low bone mass;

• determine to what degree behaviors can be modified and how behavior modification impacts on 

skeletal health;

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• determine if educational intervention in young women will change behaviors and improve skeletal 

health in late adolescence;

• determine compliance rates in women who have been placed on bisphosphonates, calcitonin, 

and other therapeutic regimens;

• evaluate the usefulness of biological markers in monitoring the study populations; and

• reduce costs to publicly funded health care programs. 

Contemplated Approach to the Problem

To conduct the study, subjects will be recruited throughout the country. Participants will be recruited 

from the following populations:

• women between 16 and 18 years;

• men between 20 and 50 years;

• men over 50 years;

• premenopausal women — greater than 20 years of age; and

• postmenopausal women.

Briefly, subjects will be followed for 10 years. Bone density scans will be provided at 6-month intervals

throughout the 10 years. During this time, information will be gathered from the subjects concerning current 

diet, medication, exercise, smoking, alcohol consumption, and past or current drug use. Education will be 

provided during the 10-year study period tailored to each population regarding nutrition, exercise, and other 

components which affect osteoporosis development. Compliance with osteoporosis prevention practices will 

be evaluated including medication adherence. Multiple interventions with ongoing reinforcement will be key 

in altering lifestyles of the subjects who will know their bone density and can be proactive in caring for their 

own skeletal health, both in the present and future.

Furthermore, we will evaluate, using the subject population and a control population, the impact of the 

proposed intervention on the cost of care related to osteoporosis; and evaluate quality of life in the subject 

population to see if we are making the positive impact we are proposing. As noted above, osteoporosis is a very

expensive disease both in terms of dollars spent on the care of its victims and the loss of self esteem and self 

worth it inflicts on its victims. We wish to measure to what extent the proposed medication, diet, and exercise 

regimens impact positively on quality of life for these individuals.

The study will be conducted in ten regions throughout the country (see Longitudinal Osteoporosis Project

attached). Each regional program will be managed by a recognized authority in the area of osteoporosis. Two 
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specially equipped buses will be assigned to each region. Each bus will house a bone densitometer (DEXA) and 

a digital radiographic unit. This equipment will allow us to measure bone mineral density and to get accurate 

X-rays of the spine and hip to determine the presence of fractures and their severity. Also, each bus will have 

sufficient equipment on board to permit the drawing, collection, and processing of blood and urine samples 

on which to perform bone marker assays.

While there are a significant number of DEXA devices across the country, the instruments will be on 

mobile buses for this project. This method was chosen for the following reasons:

• In order to maximize compliance and continued participation in the study, it is necessary to take the 

DEXA scan units to the study population for as much convenience as possible.

• The greatest degree of consistency between data collected in each region can occur with the same means 

of study delivery. In addition, fewer machines will be used nationwide and can be standardized to the 

same phantom and calibration standards.

• Data will be compiled and analyzed in a central data facility. All results of the project will be published 

in appropriate, peer-reviewed journals as soon as possible.

Cost

The total cost of this program for the 10-year project period is estimated to be approximately $208 million 

or approximately 0.75 percent of the current annual cost of osteoporosis to publicly funded health care programs. 

We are proposing to conduct this project in two phases. 

Phase I — Planning Phase: $3 Million. We would like to start this project with an 18-month planning phase

which would afford us the opportunity to design the study, including the survey and educational materials needed;

evaluate several centers to select the best one to serve as the data management center; and to build one mobile

research laboratory that will be used to test public acceptance of the study and the efficacy of the educational 

and survey instruments.

Phase II — Operational Phase: $205 Million for the 10-Year Study. The planning period will be followed 

by the study phase in which we will conduct the full study in the ten regions of the United States noted below. 

We project that this portion of the project will cost, for the total 10 years of the project, approximately $205 

million which is less than 1 percent of what publicly funded health care programs currently spend on osteoporosis-related health problems each year.

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References

1 Schneider, EL and Guralnik, JM. “The aging of America,” JAMA 263 (1990): 2335–40.

2 Barrett-Connor, E. “The economic and human costs of osteoporotic fracture,” Am J Med. 98 (1995): 3S–8S.

3 McBean, LD, Forgac, T, and Finn, SC. “Osteoporosis: Visions for care and prevention — a conference report,” J Am Diet

Assoc 94 (1994): 668–71.

4 Melton, LJ, Chrischilles, EA, and Cooper, C. “How many women have osteoporosis?” Bone Miner Res 7 (1992): 1005–1010.

5 Peck, WA, Riggs, BL and Bell, NH. “Research directions in osteoporosis,” Am J Med 84 (1988): 275–82.

6 Kellie, SE and Brody, JA. “Sex-specific and race-specific hip fracture rates,” Am J Public Health 80 (1990): 326–28.

7 Ray, WA, Griffin, MR, and Baugh, DK. “Mortality following hip fracture before and after implementation of the prospective

payment system.” Arch Intern Med 150 (1990): 2109–2114.

8 Johnston, CC and Slemenda, CW. “Identification of patients with low bone mass by single photon absorptiometry and 

single-energy x-ray absorptiometry,” Am J Med 98 (1995): 37S–40S.

9 Fassler, AC and Bonjour, JP. “Osteoporosis as a pediatric problem,” Pediatr Clin N Am 42 (1995): 811–24.

10 Sandler, RB, Slemenda, CW, and Laporte, RE. “Postmenopausal bone density and milk consumption in childhood 

and adolescence,” Am J Clin Nutr 42 (1985): 270–74.

Longitudinal Osteoporosis Project: Regional Division of the Continental United States

Region Buses States

1 2 Alabama, Florida, Georgia, Mississippi

2 2 Kentucky, North Carolina, South Carolina, Tennessee

3 2 Arkansas, Louisiana, Oklahoma, Texas

4 2 Idaho, Montana, Oregon, Washington, Wyoming

5 2 Arizona, Colorado, New Mexico, Utah

6 2 California, Nevada

7 2 Illinois, Indiana, Michigan, Missouri, Ohio, Wisconsin

8 2 Iowa, Kansas, Minnesota, Nebraska, North Dakota, South Dakota

9 2 Delaware, Maryland, New Jersey, Pennsylvania, Virginia, West Virginia

10 2 Connecticut, Maine, Massachusetts, New Hampshire, New York, Rhode Island, Vermont
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11 Heaney, RP and Recker, RR. “Effects of nitrogen, phosphorus, and caffeine on calcium balance in women,” J Lab Clin Med

99 (1982): 46–55.

12 Massey, LK and Whiting, SJ. “Dietary salt, urinary calcium, and bone loss,” J Bone Miner Res 11: (1996): 731–36.

13 Slemenda, CW, Miller, JZ, Hui, SL, Reister, TK, and Johnson, CC, Jr. “Role of physical activity in the development of 

skeletal mass in children,” J Bone Min Res 6 (1991): 1227–33.

14 Pruitt, L, Jackson, R, Bartels, R, and Lehnard, H. “Weight-training effects on bone mineral density in early postmenopausal

women,” J Bone Miner Res 7 (1992): 179–85.

15 Chow, R, Harrison, JE, and Notarius, C. “Effect of two randomized exercise programmes on bone mass of healthy 

postmenopausal women,” BMJ 295 (1987): 1441–44.

16 Diamond, T, Stiel, D, and Lunzer, M. “Ethanol reduces bone formation and may cause osteoporosis,” Am J Med 86 (1989):

282–88.

17 Chesnut, CH. Osteoporosis: Etiology, Diagnosis, and Management. 2nd ed. Philadelphia, PA: Lippincott-Raven Publishers; 1995.

18 Halouia, L and Anderson, JJ. “Lifetime calcium intake and physical activity habits: independent and combined effects on 

the radial bone of healthy premenopausal Caucasian women,” Am J Clin Nutr 49 (1989): 534–41.

19 Wickham, CAC, Walsh, K, and Cooper, C. “Dietary calcium, physical activity, and risk of hip fracture: a prospective study,”

Br Med J 299 (1989): 889–92.

20 Kelepouris, N, Harper, KD, Gannon, F, Kaplan, FS, and Haddad, JG. “Severed osteoporosis in men,” Ann Intern Med 123

(1995): 452–60.

Nancy K. Mello, Ph.D. Harvard Medical School

Drug and Alcohol Effects on Reproductive Function

Alcoholism and drug abuse are frequent problems among young women in their early reproductive years. 

A number of neuroendocrine abnormalities are associated with chronic drug and alcohol abuse; abnormalities 

that may impair fertility and/or compromise neurobehavioral development of the offspring. Neuroendocrine 

abnormalities in women are expressed clinically as disorders of the menstrual cycle, i.e., annovulation, luteal 

phase dysfunction, and amenorrhea. Disorders of prolactin regulation, expressed as hyperprolactinemia, sometimes associated with galactorrhea, are also observed. The risk for spontaneous abortion is a frequent concomitant 

of alcohol and cocaine abuse. Alcoholism is also implicated in early menopause, but the cocaine epidemic is 

too recent to evaluate its effects on menopause.

Most drugs of abuse can cause these menstrual cycle disorders. Polydrug abuse probably exacerbates the 

severity of these disorders as well as complicating interpretation of the role of cocaine, opiates, or alcohol per se.

However, many menstrual cycle disorders have been replicated in animal models of drug and alcohol self-administration under controlled conditions. Moreover, annovulation, luteal phase dysfunction, and hyperprolactinemia 

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also have been observed in normal healthy social drinkers studied on a clinical research ward for 35 days. 

Such pre-clinical and clinical studies, conducted under controlled conditions, provide compelling evidence 

that abused drugs disrupt the menstrual cycle in otherwise healthy females.

Unanswered Questions

• The possible mechanisms by which cocaine, opiates, and alcohol disrupt the menstrual cycle are unknown. 

• The anatomical locus of cocaine, opiates, and/or alcohol’s primary impact on the hypothalamic-pituitarygonadal-adrenal axis is also unknown.

• The extent to which menstrual cycle disruptions are reversible if drug abuse stops is unknown.

• The effect of tolerance to chronic drug or alcohol exposure on reproductive function is unknown.

• The implications of neuroendocrine abnormalities induced by drug and/or alcohol abuse for abnormal 

fetal growth and development is not understood. 

Interactions Between Menstrual Cycle Phases, Abused Drugs, and Treatment Medications

In addition to the adverse effects of abused drugs on the menstrual cycle, the menstrual cycle also can influence the effects of abused drugs as well as treatment mediations. Recent evidence suggests that the hormonal 

profile associated with the follicular, periovulatory, and mid-luteal phases of the menstrual cycle may influence 

the reinforcing effects of abused drugs. It is possible that the subjective and toxic effects of abused drugs are 

greater at some menstrual cycle phases than at others.

There is also increasing evidence that the efficacy of some therapeutic agents may vary as a function of 

menstrual cycle phase. It is important to evaluate the ways in which the hormonal milieu of each phase of the 

menstrual cycle may modify the effectiveness of medications as a function of hormone-related changes in the 

pharmacokinetics and pharmacodynamics of the medications. Preclinical and clinical studies should be conducted 

to address these important issues. 

Unanswered Questions

• How does therapeutic drug effectiveness vary across menstrual cycle phases? What is the physiological 

basis for these variations?

• How do gonadal steroid hormones influence the effects of abused drugs and analgesic drugs? 

• How do drug abuse treatment medications that are opioid antagonists (naltrexone, buprenorphine) effect

menstrual cycle function? (Since gonadotropin release is under endogenous opioid inhibitory control, 

opioid antagonists are often used clinically to treat infertility disorders and could enhance fertility).
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• How do phases of the menstrual cycle, particularly premenstrual dysphoria (called late-luteal phase 

disorder in DSM-IV), affect initiation and exacerbation of alcohol and drug abuse patterns.

Unanswered Questions Relating to Hormonal Effects on Immune Function and Vulnerability to AIDS

Cocaine has major stimulatory effects on the hypothalamic-pituitary-adrenal axis. Pharmacokinetic analyses 

have revealed a very close temporal concordance between plasma cocaine levels and plasma ACTH levels in

humans. In addition, cocaine administration causes a significant increase in plasma cortisol levels following an

antecedent increment in the pulsatile release of ACTH. Recent studies have highlighted the importance of glucocorticoids in modulating immune function in human immunodeficiency virus (HIV) infection. Cocaine administration

may enhance both risk for HIV infection and severity of progression of HIV. Development of medications for the

treatment of cocaine abuse and dependence should involve evaluation of drug effects upon the hypothalamicpituitary-adrenal axis. 

Opportunities for Research

Animal models of reproductive function and drug abuse. Research on these issues is facilitated by the 

availability of animal models of drug and alcohol self-administration. Neuroendocrine control of the menstrual

cycle in rhesus females is almost identical to that of human females, so long-term, repeated measures designs 

are possible. In animal models, the possible confounding effects of polydrug abuse, malnutrition, and other 

medical disorders is eliminated.

Technological advances in endocrine research. Analysis of the anatomical locus and type of functional 

disruption caused by alcohol and cocaine at each level of the hypothalamic-pituitary-gonadal axis is facilitated 

by the availability of a number of provocative tests of endocrine function. These provocative tests can be used to

stimulate each component of this complex interrelated system. Moreover, advances in the quantitative analysis 

of hormone release patterns permit more precise assessment of the effects of abused drugs and treatment medications, LH pulse frequency, and amplitude changes over the menstrual cycle. During the follicular phase, the 

pulsatile release of LH is quite rapid, about 1.4 pulses per hour. LH pulse frequency and amplitude builds to 

a crescendo that culminates in ovulation. Then LH pulses slow during the luteal phase and pulse amplitude is 

highest at the middle of the luteal phase. Clinical studies have shown that many infertility disorders are associated

with infrequent LH pulses of low amplitude throughout the menstrual cycle or no LH pulses at all. It is possible

that alcohol and cocaine may disrupt pulsatile release of essential gonadotropin hormones to result in amenorrhea 

and other menstrual cycle disorders. The discovery of the importance of LH pulse frequency was first made in 

the rhesus monkey model and rapidly translated into clinical treatment.

Summary Recommendations and Comments

• Analysis of the effects of alcohol and drugs on neuroendocrine function requires integrative physiological

studies in women or in the whole animal because of the complex interrelationships between each 

component of the hypothalamic-pituitary-gonadal and hypothalamic-pituitary-adrenal axis.

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• Animal models of female endocrine function are essential for controlled studies of the acute and chronic

effects of alcohol and drugs on neuroendocrine function. Major discoveries in reproductive biology have

been made in the female rhesus monkey model because it so closely approximates neuroendocrine regulation of the menstrual cycle in human women. The rhesus monkey drug self-administration model also is

useful because monkeys will self administer most drugs that are self administered by man.

• Studies of the effects of therapeutic drug regimens (e.g., buprenorphine, LAAM, naltrexone), as well as

drugs of abuse on normal reproductive function in females, should be conducted. Pharmacotherapies 

for the treatment of alcoholism and drug abuse often have direct effects on the endocrine system.

• In an effort to redress the decades of neglect of issues clinically related to women’s health in mental and

addictive disorders, Congress should appropriate additional funds for the establishment of a series of special

research centers focused upon the impact of drug abuse and alcoholism on women’s health, broadly defined.

Since menstrual cycle normalcy is a gender-specific, unique feature of women’s health throughout the 

reproductive years, the impact of substance abuse on female neuroendocrine function is one important

aspect of health in women.

• In view of the trend towards an aging American population, and the relative longevity of women in 

comparison to men, special attention should be paid to the impact of alcoholism and drug abuse on the

health of perimenopausal and postmenopausal women. Recent evidence that social drinking can increase

estradiol levels in postmenopausal women on estrogen replacement therapy by over 300 percent suggests 

the importance of evaluating drug and alcohol effects in this group. Drug-induced changes in estradiol

could alter the complex risk-benefit ratio of hormone replacement therapy in postmenopausal women.

References

Mello, NK, Mendelson, JH, and Teoh, SK. “Alcohol and neuroendocrine function in women of reproductive age,” in JH 

Mendelson and NK Mello (eds.). Medical Diagnosis and Treatment of Alcoholism. New York, NY: McGraw-Hill, Inc., 1992, 

pp. 575–621.

Mello, NK and Mendelson JH. “Cocaine’s effects on neuroendocrine systems: Clinical and preclinical studies,” Pharmacol 

Biochem Behav 57 (1997): 571–99.

Mello, NK, Mendelson, JH, Kelly, M, Diaz-Migoyo, N, and Sholar, JW. “The effects of chronic cocaine self-administration 

on the menstrual cycle in rhesus monkeys,” J Pharm Exp Ther 281 (1997): 70–83. 

Ginsburg, ES, Mello, NK, Mendelson, JH, Barbieri, RL, Teoh, SK, Rothman, M, Gao, X, and Sholar, JW. “Effects of alcohol 

intoxication on estrogens in postmenopausal women,” JAMA 276 (1996): 1747–51.

Mendelson, JH and Mello, NK. “Drug therapy: Management of cocaine abuse and dependence,” N Engl J Med 334 (1996):

965–72.

Mendelson, JH and Mello, NK. “Cocaine and other commonly abused drugs,” in AS Fauci, E Braunwald, KJ Isselbacher, 

JD Wilson, JB Martin, DL Kasper, SL Hauser, and DL Longo (eds.). Harrison’s Principles of Internal Medicine. Fourteenth 

Edition. New York, NY: McGraw-Hill, Inc., 1997, pp. 2512–16.
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Virginia Miller, Ph.D. Mayo Foundation

My name is Virginia Miller. I am an Associate Professor of Surgery and Physiology representing the Women’s

Health Care Council from the Mayo Clinic, Rochester, Minnesota. The Women’s Health Care Council is a group 

of 20 physicians and scientists appointed by the Board of Governors to address mechanisms to improve women’s

health care through clinical practice, education, and research. The Mayo Clinic and Foundation is a private, multidisciplinary, integrative practice with three primary locations in Rochester, Minnesota, Scottsdale, Arizona, and

Jacksonville, Florida, and regional practices in the upper Midwest.

Priorities for women’s health through the 21st century should encompass the entire scope of a woman’s 

health experience including prevention, early detection, intervention, and rehabilitation programs. Several areas are

identified in which the resources available at the Mayo Clinic could be used to advance women’s health. These are:

• Translating outcomes from clinical trials to the community setting.

• Applying innovative prognostic, predictive, and early detection diagnostic procedures to appropriate 

populations for women at risk for cardiovascular disease, cancer, and osteoporosis.

• Translating knowledge from basic sciences to relevant populations of women through integrative, 

mulitdisciplinary approaches.

• Understanding basic mechanisms of disease processes with an emphasis on cardiovascular disease, 

ovarian cancer, and anabolic therapies for bone.

• Establishing smoking cessation and other rehabilitation programs tailored to meet the unique needs 

of women.

Ann Mulligan DES Cancer Network

The DES Cancer Network is a national nonprofit consumer advocacy organization that addresses the special

needs of women who have had clear cell adenocarcinoma of the vagina or cervix — a cancer linked to prenatal

exposure to the synthetic estrogen diethylstilbestrol or DES.

The mission of the DES Cancer Network is to provide surviving clear cell cancer patients with ways to contact and support one another; to offer assistance and information to newly diagnosed patients who are undergoing

treatment; and to support those women whose clear cell cancer is terminal.

DES daughters are at increased risk for a rare cancer of the vagina or cervix, called clear cell cancer. So far,

clear cell adenocarcinoma has been found in DES daughters between the ages of 7 and 42.

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Clear cell vaginal or cervical cancer, the “signature” cancer of DES, is linked to in utero exposure to DES. 

Typical treatment includes radical hysterectomy, vaginectomy, lymphadenectomy, and vaginal reconstruction.

Radiation is often used with surgery. The current estimate is that one in 1,000 DES daughters are at risk 

for developing clear cell cancer.

It continues to be important for DES daughters and their physicians to be aware that there is no specific 

age after which the risk for clear cell cancer is over. At this time, the upper-age limit for the development of 

the cancer is unknown. Researchers report that it is possible that “the age for the greatest potential hazard to 

the DES-exposed has not yet arrived.”

Questions to be Answered

There are several issues related to DES exposure and clear cell cancer which should be made a priority 

for research at NIH.

• What are the risks for DES daughters as they enter menopause?

• What are the benefits and risks of estrogen/hormone replacement therapy for women who were 

prenatally exposed to the synthetic estrogen diethylstilbestrol?

• Are DES daughters at increased risk of developing clear cell adenocarcinoma at perimenopause? 

• Is there another incidence peak of clear cell cancer at menopause?

• Clear cell adenocarcinoma was known before DES in postmenopausal women. What might the 

experience of DES daughters be when they reach the age when clear cell had previously been 

diagnosed? Are we headed for an explosion of clear cell cancer cases?

• What are the best treatments for clear cell adenocarcinoma? Is surgery, chemotherapy, or radiation 

most successful?

• What is the an effective treatment for recurrences of clear cell cancer?

Mary Lynn Newport, M.D. American Society for Surgery of the Hand

Thank you for allowing me to present this testimony on behalf of the American Society for Surgery of the

Hand. Our 1,500 member organization consists of orthopaedic, plastic, and general surgeons who spend the 

majority of their time dealing with disorders and injuries of the hand and upper extremity. The mission of this 

society is to improve the outcome for individuals with upper extremity disorders and injuries through education,
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research, representation, patient advocacy, and community service. I also serve on the American Academy 

of Orthopaedic Surgeons’ Task Force on Women’s Health, with whom this testimony was developed.

I would like to address three musculoskeletal problems in the upper extremity which have a significant 

impact on women. These are fracture of the distal radius, carpal tunnel syndrome, and osteoarthritis of the 

basilar joint of the thumb.

The first issue I would like to address is that of fracture of the distal radius, or Colles’ fracture, named after

Abraham Colles who first described this wrist fracture in 1814. He stated at that time that, while there might be 

a residual deformity, a complete and painless resumption of function should be expected. This attitude should 

have been disproved by a significant body of recent research, but still lingers today (Stewart; Jupiter). This 

fracture usually occurs as the result of a simple fall at home. It comprises approximately 10 percent of all adult 

fractures, making it one of the most common fractures we see as orthopaedic and hand surgeons. There is a 

peak incidence of this adult fracture in the seventh decade. Women are affected seven times more often than 

men. In addition, there is a threefold increase in the risk of hip fracture after Colles’ fracture with its attendant 

25 percent mortality rate within 1 year of injury. It has become clear to us that: (1) Colles’ fractures are not, 

in and of themselves, a benign entity, worthy of little or no attention; and (2) that sustaining a Colles’ fracture 

is a clear indication of osteoporosis with all its attendant risks. 

One of the reasons Abraham Colles felt this fracture should not be significantly worried about was that it

occurred in older people, usually after retirement from the work force, and that some patients with this fracture

actually do fare well, despite significant deformity. We have found, however, that many patients do not do well

unless treated carefully and aggressively. There is frequently loss of motion, pain with motion, and significant 

weakness of pinch and grasp after healing of these fractures. Even when treated appropriately, these fractures can

severely affect one’s ability to function independently, especially in the face of any other medical condition, such as

cataracts, diabetes, or osteoarthritis of the thumb or lower extremities. This loss of independence produces a significant impact on the patient and the patient’s family, who must now help at home in all aspects of personal care and

transportation. Otherwise, this burden must be assumed by home health organizations with its attendant expense. 

The expense in suffering and in financial terms clearly increases exponentially if the wrist fracture is but a 

harbinger of an osteoporotic hip fracture. While there is an increasing understanding of osteoporosis, its risk 

factors and treatment, at the present time there is almost no data or interest in connecting those large numbers 

of patients with wrist fractures with the endocrinologist so that their osteoporosis can be categorized and treated,

hopefully before the hip fracture occurs. 

As our population ages, this fracture must receive the attention it deserves not just from the surgical but also

from the global medical and social standpoint so that patients can be returned to a functional and independent

existence and future problems are mitigated or prevented by aggressive intervention. With the aging of our population, this problem will only increase. In addition, as you have undoubtedly been made aware, our young women

are not consuming adequate amounts of calcium as teenagers, the time of maximum bone building, making osteoporosis and all of its complications an even greater threat to our future. We would, therefore, ask that you seriously

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consider the Colles’ fracture as an indicator of osteoporosis and support research which can determine who might 

be at risk for Colles’ fracture (i.e., how to prevent the fall which breaks the radius) and which might determine, 

once a Colles’ fracture is sustained, if there are any indicators which might determine who specifically might 

be at risk for future hip fracture.

The second area of hand surgery which significantly affects women’s musculoskeletal health is the subject 

of carpal tunnel syndrome. Carpal tunnel syndrome is defined as a compression of the median nerve as it runs

through the carpal canal of the wrist. This canal is formed on three sides by the bones of the wrist. The roof is

formed by a thick unyielding structure — the transverse carpal ligament. Through it runs the nine flexor tendons 

of the fingers and the median nerve. Carpal tunnel syndrome is characterized by numbness and tingling in the

thumb, index, and long fingers, by weakness and clumsiness of pinch and grasp, and pain in the palm and fingers. 

It is estimated that approximately 400,000 carpal tunnel surgeries, done to relieve pressure on the median

nerve, are performed in the United States each year (Palmer). This makes it one of the most common surgical 

procedures performed today. Assuming longevity to the age of 70, there is an estimated incidence of carpal 

tunnel syndrome of 11 percent in women compared with 3.5 percent in men (Stevens). This increased incidence 

in women is secondary to a number of factors known to be associated with carpal tunnel syndrome including 

pregnancy, menopause, use of oral contraceptives, and hysterectomy. Factors associated with carpal tunnel syndrome, but not associated with gender, are history of a distal radius fracture, obesity, physical inactivity, and wrist

depth/width ratio (though this is typically smaller in women). In addition, we know the incidence of carpal tunnel

syndrome is increasing, with a 30 percent increase between 1965 and 1980 (deKrom). While some of this increase

might be attributable to work factors, such as the increasing population of women in the work force and the

increasing use of keyboarding as a work activity, the vast majority of patients with carpal tunnel syndrome are 

those with no attributable cause, i.e., an idiopathic presentation, albeit with a number of associated factors. The

mean age of occurrence is 54 years, but this too appears to be changing, with an increasing percentage of younger

patients. The pathophysiology of carpal tunnel syndrome is not clearly understood. It is known that pressure within

the carpal canal is increased in patients with this condition (Gelberman). It would appear that in these patients the

tenosynovium surrounding the flexor tendons becomes thickened and its increased mass increases pressure overall

within the canal and compresses the more yielding median nerve, thereby blocking microcirculation within the

nerve and causing the typical symptoms of numbness, tingling, and pain. The pathology is known but the cause 

of this thickened tenosynovium has not yet been delineated.

The financial impact of this condition is substantial, both in medical costs and lost or minimized wages and 

in time lost from work. The major thrust of research on this condition is mainly on the best operative technique.

Only recently have any efforts been made on behalf of workers to modify their workstation to make it more

ergonomically appropriate. It is unclear, however, that this approach is effective. A lifestyle modification, shown 

to be beneficial, has been to increase the general physical activity and fitness of workers. We know that our American population as a whole is less active than it should be and there is a significant percentage of our population

who are obese. It is far too simplistic to suggest that carpal tunnel syndrome is caused only by inactivity or obesity
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and that all cases could be prevented or treated by instituting aerobic exercise programs. The cause of idiopathic

carpal tunnel syndrome is multifactorial, even in the workplace.

The large number of patients in general, and women in particular, who suffer from carpal tunnel syndrome 

and require treatment should make us all pause at the enormity of this condition, its disruption of the workplace

(whether or not it is a work-related condition), and its cost to society. Certainly prevention must be researched,

especially at present where the causative mechanism has not yet been fully delineated, but clearly we need to 

discern the cause of this condition at the cellular and physiologic level before we can truly impact our patients 

and our society.

The last issue concerning women’s musculoskeletal health is arthritis of the basilar joint of the thumb. This 

is the joint which allows the greatest freedom of motion in the hand and the one responsible for placing the thumb

in innumerable positions. Its stability allows fine and strong pinch. In short, it is the joint upon which the thumb

depends and, as a consequence, upon which the hand depends. Eaton has pointed out that without a stable, painfree basilar joint of the thumb, nearly every activity of daily living — brushing teeth, opening a car door, using a

key, picking up a book — become difficult or impossible. Women suffer from osteoarthritis of this joint ten to 20

times more frequently than do men. It has been shown in post-mortem studies that approximately 50 percent of

postmenopausal Caucasian women will show near-complete destruction of this joint. Another 25 percent will show

significant deterioration of the joint cartilage (Pellegrini). It is, in fact, the most common site of premature joint

degeneration in women (Kirk). It is thought that idiopathic hypermobility, a frequent finding in women, is probably the major factor in allowing wear and tear of this joint. 

Fortunately, many women who are symptomatic can be treated conservatively with nonsteroidal antiinflammatory medications, splinting, or intra-articular steroid injections. While not a big-ticket item, the shear 

volume of patients requiring this conservative treatment causes this condition to be a significant cost to society 

even before factoring in household activities and duties which can no longer be performed or hobbies which cannot be enjoyed because of pain. Surgically, it has been an area of significant research for hand surgeons, especially 

as it is the most common site needing surgical reconstruction in the upper extremity. Current solutions for the 

most part depend on soft tissue interposition between the arthritic bones rather than the total joint replacement

more commonly seen in the hip and knee. The basilar joint of the thumb is very complex architecturally and it 

has been extremely difficult to develop a joint replacement which has been capable of withstanding the extraordinary stress and freedom of motion required of this joint. As with the other subjects I have discussed today, the

major thrust has been in treatment of the underlying condition rather than prevention or better understanding 

the basis of the disorder. And, while this is a small joint, when diseased, the results can be far-reaching for that

patient’s life and lifestyle and can significantly limit their ability to remain independent.

To summarize, the hand and wrist play an extraordinary role in each and everyone’s daily existence. The conditions which I have commented on today are but a few of the upper extremity musculoskeletal problems to which

women are more susceptible and for which I hope you see fit to direct sufficient energy and resources to help us

better understand and hopefully prevent these problems when we can and treat them effectively when we cannot.

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References

Burton, RI. “Basal joint arthrosis of the thumb,” Orthop Clin North Am 4 (1973): 331.

DeKrom, M, Knipschild, P, Kester, A, et al. “Carpal tunnel syndrome: Prevalence in the general population, “J Clin Epidemiol

45 (1992): 373.

Gelberman, R, Szabo, R, and Mortensen, W. “Carpal tunnel pressures and wrist positions in patients with Colles’ fractures,” 

J Trauma 24 (1984): 747.

Jupiter, JB and Knirk, JL. “Intra-articular fractures of the distal end of the radius in young adults,” J Bone Joint Surg 68 

(1986): 647.

Kirk, JA, Ansell, BM, and Bywaters, EGL. “The hypermobility syndrome: Musculoskeletal complaints associated with 

generalized joint hypermobility,” Ann Rheum Dis 26 (1967): 419.

Palmer, DH and Hanrahan, LP. AAOS Instructional Course Lectures 44 (1995): 167.

Pellegrini, VD Jr. “Osteoarthritis of the thumb trapeziometacarpal joint: A study of the pathophysiology of articular cartilage

degeneration,” J Hand Surg 16A (1991): 967.

Stevens, J, Sun, S, Beard, C, et al. “Carpal tunnel syndrome in Rochester, Minnesota, 1961 to 1980,” Neurology 38 (1988): 134.

Stewart, HD, Innes, AR, and Burke, FD. “Factors affecting the outcome of Colles’ fracture: An anatomical and functional study,”

Injury 16 (1985): 289.

Gloria J. Nichols, B.S.P, M.Ed., Ph.D. The University of Georgia

New Priorities for Research on Women’s Health in the Pharmaceutical Sciences

• Gender-related analysis of medications; specifically the pharmacokinetic differences in the absorption, 

distribution, metabolism, and elimination of drugs and changes that occur during pregnancy and 

different phases of a women’s life span.

• Research on the considerations of the sociodemographic factors, such as gender, age, race, socioeconomic

status, ethnicity, and cultural background, affecting quality-of-life measures and pharmacoeconomic studies

in women and minorities.

• Epidemiological research on disease patterns, health-risk assessment profiles, and methodological developments in gender-related outcomes measurement. Health-risk assessment focuses on the characteristics of 

the targeted population that are linked to behavioral and environmental risks, and the health consequences 

of exposure to those risks. Research is particularly needed to explore factors that lead to and result from

exposure to adverse effects of drug entities as potential risks in women.
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• Research on the influence of hormonal factors on the course of specific diseases and disorders affecting

women, along with the utility of using hormonal strategies as potential hormonal agents in treatment 

and patient management.

• Outcomes research studies that relate to the clinical manifestations, risk factors, disease course, and 

response in such disorders as osteoporosis, osteoarthritis, and fragility. Studies are needed on the markers 

of prognosis and followup on recent progress on biologic and genetic markers along with therapeutic 

management decisions to the disease potential.

• Ongoing research for new developments in AIDS research and drug development. This will include an

overview of the epidemiology of the disease state and the outcomes research for evaluating effective drug

therapy protocols; successful medical interventions; and optimal economic and therapeutic options for 

the practice setting.

• Research studies on the risk and benefits of hormone replacement therapy and new developments in 

terms of humanistic, economic, and quality-of-life parameters. Cross sectional, longitudinal, retrospective,

and prospective studies are needed. Different populations at risk, compliance, and followup, and the presence of concomitant risk factors and duration of HRT should be considered.

• Cardiovascular disease research in women should include more demonstration projects on management

strategies, including the use of group and educational programs for risk factor reduction, as well as indications for drug therapy and practice guidelines for hormone replacement therapy. Factors defining the

high-risk patient (utilization of standardized guidelines), assessing and identifying women at high risk, 

and guidelines for utilization of therapeutic options need to be clarified.

• Research that examines the physiologic and pathophysiological differences that are responsible for cardiovascular disease and altered drug responses that occur in minority populations and women.

• Patient decisionmaking models and information systems, and computerized systems of online information 

services should be further developed, tested, and evaluated for accuracy of information; their impact on

knowledge and confidence; and their usefulness in patient education and compliance management of 

drug therapy.

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Catherine Noe Arthritis Foundation

Arthritis is the most prevalent chronic condition affecting women. Currently, 23 million women have arthritis 

and the number is expected to grow to 36 million by the year 2020. The cost of arthritis to our nation in lost

wages, disability payments, hospitalizations, physician visits, and medications is close to $65 billion annually 

— representing over 1 percent of our Gross National Product.

Arthritis is a serious disabling condition which discriminates against women in overall prevalence. Women

with rheumatoid arthritis outnumber men two to one. In the case of systemic lupus erythematosus and fibromyalgia, nine women have the disease to just one male. Given its enormous impact on women and its projected rate 

of growth in the future, arthritis must have a prominent place in the women’s health agenda of the 21st century.

The economic, social, and psychological impact of arthritis on women is staggering. Arthritis is the leading

cause of disability and the second leading cause of disability payments. Studies indicate that approximately half 

of patients who are working when diagnosed with rheumatoid arthritis become disabled within 10 years, suffering

substantial earnings loss. Arthritis is the condition reported by women as the leading cause of physical limitations 

in activities of daily living. The impact of arthritis on psychological status has been noted in terms of depression,

coping strategies, anxiety, cognitive changes, self-efficacy, and learned helplessness.

There are several research advances within the last 10 years which stand out for arthritis patients. The use 

of methotrexate as a safe and effective long-term treatment for rheumatoid arthritis has successfully controlled

symptoms and reduced the need for steroids in adults and children. Advances in genetic research, Lyme disease

recognition and treatment, and joint replacement technology are considered among the most important in improving the lives of arthritis patients.

For women, perhaps the most significant gap in arthritis research is the role of genetic makeup and hormones.

Most researchers believe that the triggers for arthritis are in a woman’s physiologic makeup. Could a woman’s body

structure, designed to bear children, be a contributing factor to the cause of osteoarthritis? Even more significantly,

are hormones responsible for the autoimmune forms of arthritis, such as lupus and rheumatoid arthritis, that so 

predominately attack women? Is there a single arthritis gene or are a combination of genes involved? Finding 

the answers to these questions will provide critical clues to finding a cure for arthritis.

Of critical importance to the Arthritis Foundation is the use of comprehensive measurements to evaluate

research outcomes in the lives of women. Outcomes measures that have meaning for women with a chronic 

disease, such as arthritis, must include a measurement of functional status and an assessment of their quality 

of life. These outcomes must be realistic and relevant to women’s lives. They must be developed to apply for 

a period of decades rather than months, and they must place value in slowing the rate of decline in functional 

levels rather than maintaining functional status. It is imperative that good outcomes measures in women’s health

research in the 21st century are quantifiable, include the patient, and consider health status in terms of a woman’s

ability to function within roles of critical importance to her over the extended term of her life.
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Nancy J. Norton, B.S. International Foundation for Functional Gastrointestinal Disorders

Dr. Pinn and members of the committee, I would like to thank you for the opportunity to speak before 

you today. My name is Nancy Norton. I am the president of the International Foundation for Functional Gastrointestinal Disorders and the current chairperson of the Digestive Disease National Coalition. As we move into the

21st century, there is a category of digestive diseases that historically has not been adequately addressed regarding

research and patient care. I am referring to the functional gastrointestinal disorders; irritable bowel syndrome (IBS)

being the most predominant. IBS is a complex of chronic disorders that malign the digestive system, affecting 20

percent of the population. Symptoms include chronic or recurrent abdominal pain, bloating, constipation, diarrhea,

and fecal soiling. These common dysfunctions strike people from all walks of life and result in a significant toll 

of human suffering and disability. IBS represents one of the most common conditions encountered by gastroenterologists and general internists. It accounts for 20 to 50 percent of referrals to gastroenterology clinics.

Our focus today is on women’s health. IBS predominantly affects women. Approximately 75 percent of 

indi-viduals with IBS in the community are female, with the incidence being reported as high as 90 percent 

in some medical centers. This is a major women’s health issue.

In a recent U.S. Householder Survey of Functional Gastrointestinal Disorders, Prevalence, Sociodemography 

and Health Impact, Drossman reported individuals with IBS will miss 13.4 days of work annually, nearly three

times the 4.9 national average. 

IBS alone has recently been called a multi-billion dollar problem by the gastroenterology community. Survey

data by Talley reflects that patients with IBS incurred a higher annual health care bill of $742 (1992 dollars) 

compared to $429 for those without the condition. This amounts to a total dollar amount of over $8 billion 

for the 35 million sufferers.

Reporting of multisystem medical complaints such as fatigue, headache, and backache occurs with increased 

frequency in patients with organic disease, and just as often in those with functional gastrointestinal disorders.

Drossman reported that patients with a functional gastrointestinal disorder reported four times as many physician

visits for nongastrointestinal as gastrointestinal visits.

Data also reveals that there is an increased risk of unnecessary extra-abdominal and abdominal surgery 

correlated by IBS patients. Hysterectomy or ovarian surgery has been reported in female patients with IBS as 

high as 47 to 55 percent, and has been performed more often in the IBS patient than in comparison groups. 

This misdiagnosed and misguided treatment may be due to a lack of knowledge and education that could 

prove dangerous for patients. Therefore, there is a pressing need to support educational programs for the 

public and health care providers.

There is a quiet desperation for those who suffer with IBS. For women this may mean resorting to frequent

physician visits for relief, only to find physicians and other health care workers who neither fully understand 

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this condition nor are able to treat them. In fact, some physicians may do unneeded diagnostic procedures 

and, when nothing is found, ignore or demean the legitimacy of their complaints.

We appear to have come to a place in medicine where we often hear that if the diagnosis isn’t life threatening then our pain and suffering is somehow not legitimate and we are discounted as not having a serious enough 

problem to investigate and pay attention to.

Recently, it was reported to us that a woman who was a member of our organization, diagnosed with IBS, 

hemorrhaged to death after alleged excessive treatment for constipation. 

As with any disease, accurate diagnosis and proper management is essential for those with IBS and other 

functional gastrointestinal disorders. Unnecessary surgery is costly and a waste of resources. But, beyond that, 

the consequences of misdiagnosis or mismanagement can lead to a serious and even grave threat to a person’s

health and well being.

We have yet to understand the precise mechanism of IBS. We need to continue scientific investigation 

to unravel the mysteries that explain the irritable bowel syndrome. 

But, in addition, we need to study the patient with IBS in order to find proper treatment that reduces 

symptoms and improves quality of life, even before we have a complete understanding of the disorder. Like 

arthritis, this is a chronic condition and the patient who suffers should not be forgotten.

That involves clinical research and education. We need to educate the professional community, as well as 

the patient. We need to look at chronic disease management for the millions of people who are already affected. 

This includes developing a biopsychosocial understanding of the illness in order to develop behavioral and 

pharmacologic treatments.

To elaborate on some of the consequences of living with IBS, please allow me to share the experiences 

of some individuals who live with this disorder.

Imagine what your life would be like if every day, or even several times a week, you woke up and within an

hour’s time you have symptoms of a GI flu. You have severe abdominal cramping — to the point of being doubled

over in pain — nausea, and diarrhea. You are unable to leave the bathroom for hours. You are now exhausted from

what you have just been through. It is difficult to get yourself to work but you arrive on time because you have

allowed yourself an extra hour or two in the morning just in case you needed it. You are hesitant to eat lunch 

or dinner because you know the symptoms could start all over again. Your life revolves around where is the 

next bathroom. 

There is a quiet anxiety, an anticipatory response to perhaps what will be next. You may be depressed 

at times feeling that your life is out of control, or at the very least, your life is controlled by your bowel. 

You live life from the edge of the room never willing to truly participate to the fullest for fear of having 

to find the quickest way out and to a bathroom. You feel a loss. There is lost potential.
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Your disease is invisible to others but it effects every aspect of your life. Who would know your pain and 

the shame you feel except those who are closest to you. Even those you are most intimate with may not understand. You feel as if you are the only one, that you are alone.

It has been said the greatest fear is of uncertainty. For people living with IBS, uncertainty is a 24-hour 

challenge, it does not go away.

That challenge is met by millions of women and men every day. They are to be credited for their enormous

personal strength of meeting the challenge of the day while continuing to put their faith and hope in the medical

community to provide the best answers. 

I would ask that, as we move forward with health care, we take into consideration the needs of these 

patients. Do not discount them.

You have an opportunity to fund research, education, and patient care on different levels for functional 

gastrointestinal disorders. We can no longer just concentrate on one aspect. The complexity of IBS symptoms 

range from basic science and physiology to research on medical and psychological treatment. We must investigate the entire picture. I would like to tell patients that there is a promise of a better future with the hope of 

resolution of their symptoms. 

You can make that commitment to millions of people by the work you are doing today to set the agenda 

for women’s health into the 21st century. Thank you.

References

Drossman, DA, Li, Z, Andruzzi, E, Temple, RD, Talley, NJ, Thompson, WG, Whitehead, WE, Janssens, J, Funch-Jensen, 

P, Corazziari, E, Richter, JE, and Koch, GG. “U.S. Householder Survey of Functional Gastrointestinal Disorders, Prevalence,

Sociodemography, and Health Impact,” Dig Dis Sci 38 (1993): 1569–80.

Talley, NJ, Gabriel, SE, Harmsen, WS, et al. “Medical Cost in Community Subjects with Irritable Bowel Syndrome,” 

Gastroenterology 1109 (1995): 1736–41.

Nancy L. Parsley, D.P.M. American Podiatric Medical Association

I appreciate the privilege of participating in today’s forum. The Office of Research on Women’s Health is 

to be commended for the extensive efforts put forth in increasing awareness of women’s health problems. By 

focusing attention on existing deficiencies in the research arena, the National Institutes of Health is fulfilling 

the important mission of stressing the need for quality research in an ever-changing health care environment. 

More important, forums such as this confirm that there is a significant lack of research directed at issues primarily

affecting women. This event offers hope that more research dollars will soon be dedicated in areas previously

ignored or underfunded.

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It is a significant honor to have been invited to present testimony today on behalf of the American Podiatric

Medical Association. As the primary providers of foot care, podiatrists are keenly aware of the need for more

research directed at foot ailments. We recognize that foot disorders represent a tremendous cost to the health 

care system. Foot pain and foot disorders not only drain vital health care dollars in a direct way, but their wider

socioeconomic impact includes lost productivity as well as potential compromises to one’s quality of life.

My presentation will focus on a variety of issues related to foot health and the substantial need for further

research. Foot ailments and foot needs specific to women are highlighted, but it is obvious that further research 

in specific areas such as diabetes and physical fitness would be beneficial to both sexes. 

First, diabetes is a chronic disease afflicting approximately 16 million people in the United States, half of 

whom are unaware they have the disease. It is estimated that 15 percent of those with diabetes will develop an

ulceration on the foot during their lifetime, and 20 percent of those ulcerations will lead to amputations. According to the American Diabetes Association, the annual incidence of nontraumatic lower extremity amputations

among people with diabetes is approximately 54,000. Among African Americans, the amputation rate is 11

/2

to 21/2 times that of whites, while Native Americans have rates as high as three or four times that of whites. 

Existing data suggests that amputation rates are higher in males than females, but anyone with the disease 

faces potentially devastating consequences.

Recently, new complications for women with diabetes have been discovered. Women with a long-term 

history of the disease, especially those who developed it at a young age, have been found to undergo menopause

early, which increases their risk of cardiovascular disease. One suggestion for counteracting the effects of early

menopause is the development of a regular exercise program. The importance of proper foot care in adhering to 

a physical fitness program cannot be underestimated. Most people don’t realize the tremendous pressure that is 

put on their feet while exercising. For instance, when a 150-pound jogger runs 3 miles, the cumulative impact on

each foot is more than 150 tons. In order to maintain good health, we must study and understand better what the

long-term effects of exercise on the feet are, especially in the presence of complicating illnesses such as diabetes.

Consider further that diabetes is the fourth leading cause of death by disease in the United States with an 

estimated dollar cost of $92 billion annually, equally split between direct medical costs and indirect costs. Foot

pathology exists as the most common diabetic complication requiring hospitalization with approximately 70 percent of all diabetics experiencing some form of neuropathy. There are over 40,000 lower extremity amputations 

in diabetics every year and between 41 and 70 percent of all diabetics with lower extremity amputations do not

survive greater than 5 years postoperatively. 

Greater concentration in the area of diabetes specifically involving the prevention of foot deformities and 

complications must be a research priority. Diabetes is not only limb and life threatening, it is particularly debilitating in other ways as well. It often ends careers, restricts social life, and compromises the independence that

mobility affords. All of these effects need to be considered when weighing the overall effects of the disease.
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Another area for focus involves the proper choice of footwear. I’m sure you’ve heard the saying that “when

your feet hurt, your whole body hurts.” For those of you in the audience today, consider your own feet at this 

very moment. If you can honestly say your feet don’t hurt and you have no foot deformities, you’re not only 

lucky, you’re in the minority.

In 1990, the National Center for Health Statistics (NCHS) designed and conducted the National Health 

Interview Survey (NHIS), which has long been a useful source of information on the health status of the civilian

noninstitutionalized population of the United States. Within the government, the Division of Medicine in the

Health Resources and Services Administration recognized the need to learn more about foot care in general. 

Therefore, a special supplement dealing exclusively with the foot was added to the 1990 Survey. It concluded 

that foot problems were more commonly reported by females than males, and by Caucasians than blacks. Further, 

it found that the incidence of problems increases with age: persons 65 years or older display roughly twice the 

rate of foot problems as those between the ages of 18 and 44 years, with roughly one in every three elderly persons 

suffering from foot problems of one form or another. Factor in what is already known about the aging of the 

population and those statistics will be conservative, at best, in a few short years.

Further review of survey results demonstrates just how prevalent foot disorders are. A prevalence-to-incidence

ratio of 83 percent was reported for corns and calluses; for bunions and arthritis of the toes, the ratio was in the

vicinity of 90 percent. Bunions were found to be five times as common among females as males and arthritis of 

the toes was reported twice as often by females versus males. Additionally, other deformities of the toes or joint

were also found to be twice as common among females as males. What accounts for these findings and how do 

we address them? This warrants further exploration.

In 1992, the APMA commissioned a survey on public attitudes towards foot care. The results of the survey

revealed some disturbing trends. For instance, over half of the women interviewed admitted to experiencing foot 

pain. Nearly one-third reported wearing shoes that were uncomfortable but looked good. One-third of the women 

in the survey wore high heels despite the pain and the potential damage to their feet. In 1992, 35 percent of

women believed that it was normal for feet to hurt sometimes while as many as 44 percent of women admitted 

to wearing good-looking shoes that didn’t fit well.

What are the long-term effects of these attitudes and trends? Does the society in which we live and function

create unrealistic demands on women in their selection of appropriate footwear? To what degree does foot pain, 

due to inappropriate shoe selection, contribute to lost productivity on the job? Is foot pain compromising one’s

quality of life by preventing an individual from participating in a physical fitness program or desired social activities? To what extent might foot pain create undue stress that affects one’s mental health? We recognize a connection between foot health and overall health status, but to what degree can improved foot health improve physical 

as well as mental health? These questions deserve consideration in assessing research needs and priorities. 

In 1994, Thompson and Coughlin discussed the effects of footwear on the foot. While the main purpose of

footwear, protection of the foot, has remained virtually unchanged, the long-term effects of footwear continue to

grow. It has been estimated that 43.1 million people in the United States have a foot problem. That’s one in six. 

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Thirty-six percent, or 15.5 million of these individuals, has regarded their foot problem as serious enough 

to warrant medical attention. The authors acknowledge, however, that proving a causal relationship between 

high-fashion footwear and foot problems has been difficult. We know for a fact that the rate of foot problems 

in shoe-wearing societies is relatively high, while investigations in societies where shoes are not worn have 

reported a paucity of foot problems. Clearly, this suggests a relationship between shoes and the development 

of foot deformities and associated pain, but the need for further investigation in this area exists. More research 

would allow us to treat foot disorders more effectively while enhancing preventive efforts.

Another area specific to women’s health that deserves further investigation involves the effects of pregnancy 

on the feet. A study by Vullo, et al. found that lower extremity pain is more likely to be developed by pregnant 

and postpartum women compared to nulliparous women. The authors recognize the effects of hormonally mediated

changes through relaxing and the resulting ligamentous laxity, including ligaments of the foot and ankle. The onset

of lower extremity pain in the second and third trimester of pregnancy suggests that biomechanical factors play a

larger role compared to hormonal influences. The combined effects of these influences need to be studied further.

We recognize that biomechanical factors associated with pregnancy and the postpartum period that contribute to

lower extremity musculoskeletal dysfunction include changes in the center of gravity or gait pattern, weight gain,

an increase in the amount of time spent in the side-lying position, and increased lower extremity demands related 

to infant care. 

A separate study by Alvarez, et al. suggests an additional effect of pregnancy on the feet. The authors found 

that the mean volume of the feet increases by 57.2 milliliters between early and late pregnancy and decreases 

by only 8.42 milliliters between late pregnancy and 8 weeks postpartum. These changes were attributed to 

retention of fluid or to an increase in soft tissues. A better understanding of, and appreciation for, the effects 

of pregnancy on one’s feet requires further study. 

Consider also the role of women in sports. Since the advent of Title IX, women have consistently expanded 

their participation in sports at every level, not only at the collegiate and professional levels. As young children 

and adolescents, girls are encouraged to participate in sports-related activities. Women are demonstrating athletic

prowess in areas previously considered to be the sole domain of men. The long-term effects of these changes 

in attitudes and patterns of physical fitness are yet to be sufficiently explored. 

We recognize that available evidence indicates an inverse association between physical activity and chronic 

diseases. Aerobic exercise is the mode most frequently studied, and appears to confer positive changes, but other

forms of exercise may prove to be equally beneficial. The appropriate duration, intensity, and frequency of the 

exercise have not been determined for any of these chronic health problems and must be considered before global 

recommendations can be made. The feet factor prominently in many forms of exercise and maintaining healthy 

feet is imperative to maintaining good health. But while the benefits of exercise are obvious, as discussed in the

1996 Report of the Surgeon General, more research is needed to determine the effects of a variety of factors on 

the risks of exercise-related injuries as well as how to make more judicious choices on how best to achieve the 

benefits of exercise while preventing injuries.
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Clearly, the ramifications of increased concentration on physical fitness as it relates to women’s health is 

worth further study. In particular, attention to lower extremity conditions are of primary importance for helping

women maintain the ability to participate in such activities over the course of a lifetime. 

Rheumatoid arthritis (RA) exists as another important area for investigation and research. Not only is the 

disease not well understood, but the prevalence in females is between 2:1 and 4:1 over males, depending upon 

the source. RA is incurable and its progression can lead to debilitating deformities which substantially affect a

patient’s quality of life. We know that the typical presentation of the disease occurs during the fourth to sixth

decades of life, but symptoms can begin at any age. When the feet are involved, the presentation is most often 

in a symmetrical pattern.

A report by Smyth and Janson stresses that the frequency of involvement of the feet among 1,000 patients 

with rheumatoid arthritis was 91 percent in females and 85 percent in males. Furthermore, the authors discuss 

the existence of evidence that two host factors, gender and immune susceptibility, are major determinants in the

development of the disease. Still, all efforts to discover a specific causative factor or triggering agent for the disease

have been unsuccessful thus far. Until the disease is better understood, we must concentrate on managing the

short- and long-term complications associated with the disease. 

In the foot, we know that the metatarsophalangeal joints of the forefoot are the first and most common sites 

of involvement in RA. With progressive synovitis in these joints, patients experience pain and stiffness when 

walking. The great toe is involved and often drifts laterally, in a fashion similar to the lesser toes. It is estimated 

that 89 percent of patients with RA have forefoot involvement. Midfoot and hindfoot deformities also occur, but 

are not as visible on plain radiographs. Other imaging techniques such as computed tomography and magnetic 

resonance imaging may be useful in delineating abnormalities in the rheumatoid foot, but this exists as another 

area for further research and study.

It has also been reported that approximately 11 percent of patients with RA have tendon dysfunction. 

Rupture of the posterior tibial tendon secondary to rheumatoid arthritis may occur in the absence of bony 

destruction on radiographic study. Additional research is needed to better understand the effects of RA in 

general, and on the feet in particular. 

Current treatment protocols vary widely, but most adhere to the belief that a more aggressive approach 

with the use of more potent drugs and modalities, earlier rather than later in the course of the disease, should 

be undertaken. The goals of treatment remain consistent, but promising advances in understanding the disease 

and enhanced forms of therapies are on the horizon. Due to research, we now better understand the function 

of the immune system and its key role in the pathophysiology of rheumatoid arthritis. The efficacy and use of

immunosuppressive agents in the treatment of the disease is still under investigation, and should be encouraged. 

Rheumatoid arthritis can be an all-encompassing disease affecting all dimensions of a woman’s life, usually

beginning with physical function. This results in loss of work, social, and recreational activities. On average, 

women incur 40 percent more chronic illnesses and live longer than men do. Therefore, they require more 

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health care and supportive services as they age. Meeting the needs of an aging population, especially one with 

a variety of chronic conditions, is one of the most significant challenges we face.

There are additional considerations with an aging population that deserve attention. Since 1900, the life

expectancy of the average American has increased by about 27 years. In 1900, there were 3 million Americans 

aged 65 or older. In 1995, this figure exceeded 33 million. In order to maintain useful, satisfying lives, people need 

to be able to move about. Mobility is a vital ingredient of the independence that older people, in particular, cherish.

Therefore, dedication of research dollars and research efforts in maintaining foot health should be a priority. 

The APMA believes the Office of Research on Women’s Health can offer important leadership in the research

arena. Between 1994 and 1996, approximately 10 percent of the total dollars dedicated to podiatric medical

research came from the federal government. Only 10 percent. The APMA and the podiatric medical colleges 

contributed a combined amount of almost 50 percent of the total research dollars. Clearly, the wide disparity 

in research funding cannot continue if we are to address the specific needs of women in today’s health care environment. If we are to fulfill our role in keeping America walking and maintaining foot health, we need to see

noticeable increases in research dollars dedicated to these purposes. An investment of this type is guaranteed 

to have far-reaching and long-lasting benefits far into the future.

Kenneth A. Perkins, Ph.D. University of Pittsburgh School of Medicine

Need for New Directions in Research on Smoking Cessation in Women

Prevalence of tobacco smoking has declined gradually in the United States since publication of the first 

Surgeon General’s Report on Smoking in 1964. However, smoking remains the single most important preventable

cause of disease morbidity and mortality. Tobacco smoking accounts for at least 20 percent of all deaths, more 

than alcohol and other drugs, accidents, and AIDS combined. Moreover, this relatively modest decline in smoking

has not been equal across all smokers but has been attenuated in women compared with men (see Perkins, 1996).

For example, from 1965 to 1987, smoking prevalence in the United States declined 0.84 percent per year in men 

vs. 0.21 percent in women, a fourfold difference. Women are now more likely to die from lung cancer than breast

cancer. Notably, sometime during the next decade, the United States is expected to become the first society in 

history in which women smokers outnumber men smokers.

Although the increasing initiation of smoking among female teens has likely contributed to the attenuated

decline in smoking prevalence among women, for several decades there has been evidence that women are also 

less likely than men to successfully quit smoking. Rates of abstinence following formal treatment programs have

generally remained stagnant over the past decade, and fewer than 10 percent of all smokers who try to quit are 

successful permanently. Results for women are even more discouraging. Some large-scale smoking cessation trials,

especially those involving nicotine replacement therapy, suggest that women are less likely than men to initiate
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quitting and more likely to relapse if they do quit. Various explanations for the poorer success of smoking cessation

efforts in women have been offered, including the greater reinforcing value in women of smoking’s influence on

body weight or food intake control, reduced availability of social support for cessation in women, and greater

impact of advertising on promoting smoking in women vs. men.

One possible explanation that has not received attention is that men and women may differ in the extent to

which they smoke for nicotine reinforcement, as opposed to smoking for other, non-nicotine factors (e.g., other 

sensory effects of smoke inhalation, conditioned responses to smoke stimuli, secondary social reinforcement).

Recent research suggests that: nicotine self-administration (i.e., reinforcement) is less robust in women, women 

may reduce their smoking to a lesser degree following nicotine pre-loading, and women may be less sensitive 

to subjective/mood effects of nicotine. In contrast, women may be more responsive to non-nicotine stimuli of

smoking. These findings are consistent with other research indicating that women are less able than men to 

detect interoceptive stimuli (physiological changes) as well as some findings that women may be less sensitive 

to other drugs, such as cocaine.

Since much of current smoking cessation efforts focus on nicotine replacement therapy via polacrilex (gum),

transdermal patch, or other means, smokers who smoke less for nicotine reinforcement would be less likely to 

obtain therapeutic benefit from nicotine replacement strategies. Indeed, any smoking cessation treatment —

whether behavioral or pharmacological in approach — would be less likely to be successful with this subgroup 

of smokers if it failed to adequately address or ameliorate possible non-nicotine factors influencing smoking. 

Perhaps, not surprising, a review of clinical research studies indicates that women are marginally or significantly less likely than men to quit smoking as a result of receiving nicotine replacement.

In summary, based on current research, it appears that the smoking behavior of women, relative to men, 

is reinforced less by nicotine intake and more by other non-nicotine factors. If confirmed, these sex differences 

would have important clinical implications; nicotine replacement may warrant a less important role in smoking 

cessation while interventions to counter non-nicotine aspects of smoking may need to be emphasized. Greater

research on sex differences in nicotine effects and in new directions for smoking cessation treatment in women 

is sorely needed.

Reference

Perkins, KA. “Sex differences in nicotine versus non-nicotine reinforcement as determinants of tobacco smoking,” 

Experimental and Clinical Psychopharmacology 4 (1996): 166–77.

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Jann Primus, Ph.D. Spelman College

On behalf of Spelman College and our president, Dr. Audrey Forbes Manley, I would like to thank 

you for inviting Spelman to be part of this important event and for allowing me the opportunity to present 

testimony focusing on “Career Issues for Women Scientists: Overcoming Barriers and Achieving Success In 

Biomedical Careers.”

As both a faculty member at and a graduate of an historically black college or university (HBCU), I would 

like to present my testimony in terms of the educational pipeline as a crucial gateway to either encourage entry 

or serve as a barrier for success. The pipleline is also the prime resource for supplying our nation with qualified

researchers, physicians, and health-related professionals. It is within this historical context and contemporary 

focus that I have entitled my remarks “The Role of Historically Black Institutions in the Production of African

Americans and Women in the Biomedical Research Enterprise.”

The Challenge

Science is created, transmitted, and applied by people. It is fundamentally a human activity. If we are to continue to have good scientists, then human resources — and by this I mean the education and continued engagement of scientists, mathematicians, and scientifically literate citizens — is almost the only important question. 

Yet, it is no secret that the U.S. educational enterprise is seriously underperforming. Distressing indicators

include an alarmingly low level of scientific and technological literacy in the general population; a projected 

shortage of well-equipped scientists, mathematicians, and engineers; and severe inequities in the access of 

minorities and women to science and medical professional fields. 

According to some of the most recent data: 

• In 1984, minorities comprised 19.8 percent of the undergraduate population and 19.1 percent of the 

graduate population; by 1994, those figures had increased to 27.1 and 23.5 percent, respectively.

• In 1994, women comprised 51.2 percent of the U.S. population; we received 54.5 percent of all undergraduate degrees, but only 39.3 percent of Ph.D.s, few of which were in the “hard sciences.”

The figures are equally distressing when we look at the professional workforce:

• In 1973, women were only 8.7 percent of all employed scientists and engineers; two decades later, 

we still represent only 21.6 percent of these professions.

• While women make up 56 percent of the U.S. population, only 21 percent of U.S. physicians are women.

• Even projecting to the Year 2010, only 30 percent of the physicians workforce will be women, based 

on the current rate of increase.
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With respect to minorities. . .

• The data reveal that in 1973, we comprised only 8.3 percent of employed scientists and engineers.

• Two decades later, this figure had increased to only 17.5 percent.

There is a national crisis looming. All analyses of rates of participation of blacks and Hispanics confirm 

a picture of severe underrepresentation in science and mathematics at all levels of our system of education. 

Women and minorities are not only severely underrepresented in these areas, but also in the health professions. 

The Success of HBCUs and Women’s Colleges

In contrast to disturbing national trends, historically black, minority, and women’s institutions have been 

the forerunner in recruiting, retaining, and successfully graduating women and minorities in the sciences at the 

baccalaureate level, and have been most successful in encouraging these underrepresented populations to enter 

professional schools and Ph.D. programs.

I point your attention to a 1990 report of the Association of American Medical Colleges (AAMC). When the 

faculties of Howard, Meharry, and Morehouse medical schools are excluded, African Americans and Latinos make 

up only .7 and 2.6 percent, respectively, of the basic science faculty.

What these schools have in common is a strong tradition of community. This is the crucial enabling factor in 

the success of historically black colleges and of other colleges that succeed with minority students. Community 

is what propels many minority graduates and graduates of women’s colleges to successful careers. These settings

warm the chilly climate for women and minorities so often noted at all levels of education in this country. 

Private liberal arts women colleges — what the Carnegie Foundation for the Advancement of Teaching ranks 

as Baccalaureate I institutions — have been especially productive of women science and mathematics graduates 

and of women graduates who subsequently earn a doctorate in science or mathematics. Indeed these colleges 

produce a higher percentage of women science graduates than any other nonspecialized category of institution. 

The high concentration of black science and mathematics graduates in the HBCUs stands in sharp contrast 

to the almost complete absence of black graduates in science and mathematics at the vast majority of the nation’s 

colleges and universities — this despite the fact that nearly all colleges and universities have black students. 

The existence of effective learning communities in HBCUs is an important factor in the success of students 

in science, but it is not the only factor. In HBCUs, professors expect that the students can and should achieve. 

They demand serious study and hard work, and they believe that deficiencies in background can be overcome.

Promising students are encouraged to engage in research projects. As a result of high expectations held by the 

faculty, students see success in science and mathematics as attainable, and therefore they can achieve.

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The Spelman Model

The success of HBCUs and women’s institutions in successfully nurturing, preparing, and graduating skilled 

scientists and health professionals is especially evident at Spelman College.

Founded in 1881, Spelman has grown from its initial beginnings as a seminary for freed slaves to a pacesetting institution that enrolls 1,900 women from 45 states and 29 international countries; employs nearly 145 

full-time faculty members; and offers a challenging liberal arts program that has prepared over six generations 

of African-American women to reach the highest levels of academic, community, and professional achievement. 

Spelman’s success in producing dynamic African-American women is most profoundly represented in the 

sciences. Before it was an issue of national concern, Spelman was building a strong science program with the goal 

of answering the needs of our nation and its business and educational communities. Today, fully one-third of the

1,900 women enrolled at Spelman consistently select mathematics, computer science, biology, physics, chemistry,

biochemistry, or a dual degree program in engineering as a major and 30 percent graduate annually in these areas.

Among a survey of the of the top 100 baccalaureate degree producers, Spelman ranked second for the number 

of undergraduate degrees awarded in mathematics to African-American graduates; fifth for the number of degrees

awarded in the physical sciences; and seventh for the number of degrees awarded in the biological sciences. 

The Association of American Medical Colleges ranks Spelman among the top ten schools with the most 

accepted black applicants to medical school. And in the period 1991-1995, the National Science Foundation

ranked Spelman among the top 26 producers of African American’s obtaining doctorates and second amongst 

historically black colleges and universities. Since 1988, the college has witnessed a 57 percent increase in the 

number of science majors entering graduate programs. Some of the graduate schools where Spelman women 

have gone on to pursue the Ph.D. include: Cornell University, Purdue University, Massachusetts Institute of 

Technology, Georgia Institute of Technology, University of Michigan, and the University of Wisconsin. 

Because of the college’s past success and capacity for future distinction, the National Science Foundation, 

along with NASA, designated Spelman a Model Institution for Excellence (MIE) in undergraduate science and 

mathematics education. Spelman is one of only six institutions nationwide to receive this distinction. The MIE 

program provides a guiding framework through which Spelman is positioning its science education and research

programs to continue to fuel the pipeline with dynamic African-American women in science and health professions. Yet, the proof of Spelman’s success is evidenced in both the quantity and quality of our graduates. Let me

name just a few. . . 

• Dr. Georgia Dwelle Rooks, the first Spelman alumna to graduate from medical school and founder of 

the first obstetrical hospital for black women in Atlanta.

• Dr. Carolyn Yancey, a pediatric rheumatologist and Associate Medical Director of the Cigna Corporation.

• Dr. Deborah Prothrow-Stith, an Assistant Dean at the Harvard University School of Public Health.
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• Dr. Audrey Manley, recently appointed as Spelman’s 8th president, trained as a neonatologist; and 

retiring as a two-star Navy admiral with the Public Health Service where she was Acting Surgeon 

General of these United States.

• And, I guess, I should mention myself.. . .as a 1981 graduate, the educational training I received at 

Spelman prepared me to succeed in gaining my Ph.D. from the Massachusetts Institute of Technology.

Research and research training are an integral part of the Spelman College science program. Contrary to 

popular misperceptions, faculty at HBCUs are active researchers. At Spelman, we attempt to instill early in our 

students this love and respect for research and investigation. Most faculty supervise an average of four undergraduate student researchers, many of whom collaborate with their faculty mentors on research articles and travel 

with faculty to make presentations at professional meetings and other gatherings of the science community. 

Spelman College faculty are principal investigators on key biomedical research projects. For example, 

• Professor Shelia McClure, in biology, is head of a $3.8 million center funded through the National 

Institutes of Health and the Spelman Center for Biomedical and Behavioral Research. Professor McClure’s 

own research focuses on “The Characterization of Mammary Adenocarcinomas and Uterine Leiomyomas: 

A study with implications for understanding fibroid tumors.”

• Dr. Mona Phillips, in sociology, is conducting research, in collaboration with clinicians at Emory 

University, on the “Indicators of Stress and Strain in African-American Women.”

• Professor Pamela Scott-Johnson, psychology, is studying the “Structure Activity Relations in the 

Olfactory System,” funded by the National Institutes of Health.

• And, Professor Pamela Gunter-Smith, who holds the Porter Professor of Physiology and is Chair of 

the Biology Department, is working under a grant from the Veteran’s Administration to understand 

“Mechanisms of Epithelial Ion Transport,” an area crucial to fighting kidney disease.

I would be remiss if I did not point out that the U.S. Department of Health and Human Services has 

been a strong supporter of Spelman:

• Just this year we received a $2.5 million grant from the Office of Minority Health to renovate our 

health facility so that we may establish a comprehensive program focused on research and education 

in African-American women’s health.

• For the past 10 years, our faculty and students have gained needed dollars for research and research 

training under the Minority Biomedical Research Support (MBRS) Program.

• And in 1996, Spelman celebrated the 25th anniversary of our Health Careers Program, an initiative 

funded through the Health Careers Opportunity Program of Health and Human Services.

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As Spelman prepares for the new millennium, we do so with a strong appreciation of the role science and 

technology will play in determining our nations ability to compete, and our responsibility to educate students 

who are equipped with the skills to meet these challenges.

A Prescription for the Future

If Spelman College typifies the atmosphere of excellence that resonates on the campuses of our nation’s

HBCUs, then we can not underestimate the critical role HBCUs, minority, and women’s institutions will continue to play in providing our nation with dynamic future leaders in science and the health professions.

If we are to take demographic projections seriously, projections which state that minorities and women 

are the fastest growing segment of our society, then we must know that these two groups will increasingly 

emerge as the population that must be trained to assume roles as . . .

• . . . physicians to treat us when we’re ill;

• . . . researchers to help prevent and cure disease;

• . . . educators to train our children, grandchildren, and great grandchildren; and

• . . . public officials to set a scientific policy agenda that is democratic, equitable, and sensitive 

to the needs of all our citizens.

In sum, minorities and women will increasingly emerge as a vital part of the human resources that our 

country depends upon to ensure its continued growth and well being.

Yet, despite Spelman’s success, the college still recognizes that much work remains. Spelman has limited

resources when compared with our majority institutional counterparts. The college’s science facilities are cramped

and outdated. Many of the students, while being some of the most sought-after African-American students in the

nation, come from economically disadvantaged backgrounds. The college’s faculty spend the majority of their time

teaching and need enhanced research opportunities. In one aspect, the challenges Spelman faces are unique to 

the college’s position as an undergraduate, liberal arts women’s college that has moved to the national forefront 

in preparing minority women for careers in scientific fields. On the other hand, the challenges Spelman must 

face are very similar to the challenges confronting the many small colleges and universities that are doing the 

lion’s share of training American students in these fields, particularly those that enroll large numbers of students 

from underrepresented backgrounds.

Let me end by pointing out that AAMC has established a goal of enrolling 3,000 underrepresented minority

students in U.S. medical schools by the Year 2000. The trajectory of current trends clearly indicate that we will 

fail to achieve that goal.

NIH, with a $12.7 billion annual budget, can lead the way in the federal sector to reverse this trend. 

We need the establishment of additional programs specifically targeted toward enhancing the capacity of HBCUs,
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minority, and women’s institutions. We need more of these programs, because they’ve only touched the tip of 

what we — African Americans, minorities, and women — can do. 

• We want to branch out into RO1-level research.

• We want to become meaningful partners and principal investigators in the more than $12 billion 

in research that NIH funds each year through its 21 institutes.

• And, we want to be in earnest conversation with NIH and other federal agencies to help set the 

nation’s scientific research policy agenda.

In this way, we can be assured that, as NIH continues to allocate what is currently a $1.8 billion budget 

for such line items as HIV/AIDS research, populations who can most benefit — African Americans, minorities, 

and women — are:

• included in clinical trials,

• have options for experimental drugs, and

• that faculty from minority institutions are significantly involved in performing the investigations.

We can also be assured that diseases and ailments that so disproportionately affect minorities and women —

diabetes, hypertension, teenage pregnancy, low-birthweight babies, heart attacks, strokes, sickle cell anemia, and 

kidney failure — are given adequate attention and funding.

Yet, as I stated earlier, the genesis of any change must begin with an adequate human resource base. Expansion of that base must begin with those institutions of higher education that have proven successful in delivering

quality, dynamic graduates. Historically black, minority, and women’s institutions have proven a vital resource.

Our diversity is our strength.

The challenge, now, if for you to tap into what we have to offer. Thank you.

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Bette A. Rank American Foundation for Urologic Disease

Summary of Women and Urologic Health

The mission of the Bladder Health Council (BHC) of the American Foundation for Urologic Disease (AFUD) 

is to provide research, education, and awareness to the general public, patients, and health care providers nationally

about bladder diseases and conditions. These include urinary incontinence, cancer, urinary tract infections, and

interstitial cystitis.

AFUD provides education programs and awareness campaigns to our constituents, working as a coalition 

with the NIH/NIDDK, Interstitial Cystitis Association, National Association for Continence, The Simon Foundation,

and the Society of Urologic Nurses and Associates.

Approximately 13 million Americans over 65 are afflicted with urinary incontinence — 80 percent of whom 

are women. This condition affects all ages and people of every social and economic level. Approximately 800,000

elderly Americans, living at home, are beset severely enough to limit daily activities and to become socially 

isolated. Direct and indirect cost to society is $16.4 billion. 

Urinary incontinence is one of the three major reasons for admittance to nursing homes, where an estimated

745,000 nursing home residents are incontinent. “The total economic impact of urinary incontinence among 

persons over the age of 65 was $8.2 billion or $2,409 per person. Based on inflation for the medical care sector, 

a revised estimate of $16.4 billion was reported in the 1996 Aging for Health Care Policy and Research (AHCPR)

Clinical Guideline Update on Urinary Incontinence.”*

“The direct cost for routine care for urinary incontinence to older people was $10.2 billion. Incontinence 

can result in longer hospital stays. The total costs associated with adverse consequences were $12.4 billion. 

In sum, the direct costs of UI were estimated to be $23.6 billion.”*

Taking care of incontinence can sometimes cause the patient, spouse, or care giver to lose the potential to earn

wages elsewhere. Indirect costs totaled $4.2 billion. Thus, the total cost of incontinence of persons over 65 was

$27.8 billion, or $3,941 per person. If prevalence and cost per treatment remain constant, the predicted 5 percent

increases in the aging population by the year 2000 will cause the total costs of UI to approach $29.3 billion. 

In 1995, Bladder Health Week was launched to focus on urinary incontinence. As a part of that effort, 

a study on “Women and Incontinence” by Yankelovich Partners, found that:

• Majority of women wait at least 1 year before discussing their condition with relatives, friends, 

or their physician.

• Most are hesitant to talk about incontinence; they are too embarrassed.

* National Association for Continence
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• Many curtail daily activities, such as going to the store, taking walks, going on trips, and visiting friends.

• Generally, urinary incontinence is accepted as a part of growing older.

• Numerous women surveyed stated that they were unhappy with their current treatment and were 

willing to try other options.

• Additionally, women were not satisfied with the care that had been provided by their physician and 

would be willing to change physicians.

Increased education, research, and treatment of women about urinary incontinence, especially at an 

earlier age, could lead to improved quality of life and ultimately lower health care costs.

Urinary tract infection (UTI) is the number one urologic condition requiring approximately 1.6 million 

hospitalizations and 10 million physician visits each year, for a total cost of $4.4 billion. UTIs are an annoying 

problem. One in five women will visit their doctor at least once each year for relief from a UTI. Twenty-five 

percent of women who experience one infection will develop recurrent urinary tract infections; and 5 percent 

of these are infections caused by the same organism that caused the first infection. Young girls around 5 years 

of age may get a UTI; girls as they become sexually active; and pregnant women can develop pyelonephritis 

during their third trimester. More than 20 percent of women over the age of 65 will experience asymptomatic 

bacteriuria and need to be carefully monitored. Bacteria in the urine can cause infection and inflammation of 

the bladder. If the bacteria travel upward from the bladder and reach the kidneys, a kidney infection may 

develop. Kidney infections are less common, but often more serious than bladder infections.

As many as half a million people in the United States may suffer from interstitial cystitis (IC). Ninety percent 

of IC sufferers are women; the average age of onset is 40, with 25 percent of the cases under 30 years of age. 

IC is a chronic inflammation of the bladder. The symptoms are pain and pressure in the bladder, urethra, 

and pelvic areas, as well as increased urinary urgency and frequency. People with IC experience urgency and 

frequency of urination — from 15 to 50 times a day, sometimes more, waking at night to urinate. They suffer 

with immense pain in the bladder, lower abdomen, and urethra. The pain experienced has been described 

to feel like paper cuts, razor blades, or acid in the bladder. 

Cigarette smokers have an increased risk of developing bladder cancer, and exposure to certain chemicals 

in the workplace, has been associated with an increased risk. When found and treated in the early stages, even 

cancerous bladder tumors are not likely to spread and are not likely to be life threatening.

We encourage and support research and education of bladder diseases for women. Together we can make 

a difference toward improving the quality of life for millions of women.

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Vicki Ratner, M.D. Interstitial Cystitis Association

The Interstitial Cystitis Association (ICA) is a not-for-profit, voluntary health organization dedicated to 

finding a cure for interstitial cystitis, a painful inflammatory bladder condition that affects predominantly women.

The organization was established in 1984 to increase awareness of the condition, provide support for IC patients

and their families, increase public and professional education, and to raise funds for IC research. 

Dr. Pinn and Honorable Colleagues from the Office of Women’s Health Research: Thank you for giving me the

opportunity to present my testimony to you today. I would like to tell you about interstitial cystitis and to report to

you about the developments over the last 5 years in the struggle to find a cure for this painful, debilitating disease. 

I am an orthopaedic surgeon and am the founder and president of the Interstitial Cystitis Association. I also have

IC. While today I appear as a seemingly healthy person to anyone who meets me, that is because the effects of

interstitial cystitis are not always visible to others. Without medication to control the pain, I would be unable 

to work, unable to travel, and unable to be here at this meeting today. I would be in constant, severe pain and 

would have to void every 15 to 20 minutes, day and night. I can assure you that my work, my family, and entire

life have all been dramatically affected by the experience of IC. Today I hope to give you a better understanding 

of IC. I hope to give you an idea of how far we have come, and how far we have yet to go. But most importantly, 

I hope to give a voice to all those IC patients who are too ill to leave their homes.

This letter, which was published in the nationally syndicated Ann Landers column in 1987, is all too typical 

of IC patients, even today:

Dear Ann Landers:

After three years of non-stop pain, 40 to 60 bathroom trips a day, little sleep, lots of tests, 12 doctors, hundreds of 

allergy shots, diets, antibiotics, and six unnecessary operations, I have finally been diagnosed as having interstitial cystitis, 

a “rare” disease that doctors seldom look for and may turn out to be not so rare... Ann, please tell readers with undiagnosed

bladder symptoms that there is help from the Interstitial Cystitis Association (ICA), P.O. Box 1553, Madison Square Station,

New York, NY 10159.

– “Diagnosed in San Antonio.”

Interstitial cystitis is a chronic inflammatory bladder condition. Its cause is unknown and, at present, there are

no uniformly effective treatments. The symptoms are similar to an acute urinary tract infection, but urine cultures

are negative and the symptoms do not respond to antibiotics. The symptoms, which can vary from mild to severe

and unrelenting, include urgency and frequency of urination — up to 60 or more times in 24 hours — and pain in

the bladder which IC patients have described as burning, like “electric shocks,” like “razor blades in the bladder,”

or being so severe that it feels like the pelvis is on fire. 

I developed IC symptoms while I was still in medical school. Like many IC sufferers, I went to doctor after

doctor looking for a diagnosis, but was unable to obtain one. I was told to see a psychiatrist. It was also suggested

that I quit medical school and get married. After seeing 14 doctors, ten of whom were urologists, I ultimately went to
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the library myself, found an article on IC that described my case, and brought it back to my doctors. They still 

were not convinced and told me that it was impossible because I was too young, and that IC was a rare, postmenopausal disease. I was told that I would just have to live with the pain and that nothing could be done, 

a recommendation that far too many IC patients still receive today. A cystoscopy was finally scheduled and the

diagnosis of IC was made — 2 years after the onset of symptoms. It was a relief to finally have a name for my 

condition, but so little was known, and few treatments were available. In 1984 I founded the Interstitial Cystitis

Association in order to find support for my own condition and to work toward better treatments and a cure.

Although IC was first described early in the 20th century, virtually nothing was done before 1984 to adequately address IC in terms of diagnosis, treatment, or research. It is only in the last 10 years that IC has been

removed from the psychosomatic chapter in Campbell’s Urology, the standard urologic textbook used at all medical

schools. The following is a sample from that chapter. IC “may represent the end stage of a bladder that has been

made irritable by emotional disturbance.... a pathway for the discharge of unconscious hatred.” This was finally

deleted from the text book in 1986, only 11 years ago. IC was considered, and still is considered by some urologists, as an “hysterical female condition.” Unfortunately, this blatantly incorrect label still haunts IC victims with 

the sufferer taking on average 41/2 years to get a correct diagnosis and often having to see an average of five 

physicians before IC is diagnosed. 

In many ways, IC could be described as a classic “woman’s disease.” Because statistically it affects women 

by a ratio of 10 to 1 over men, it could be argued that the largely male urological community has been slow 

to develop an interest in IC. Additionally, IC symptoms are varied and not uniformly present in all IC sufferers. 

Even the so-called “classic” symptoms, such as glomerulations on the bladder wall, do not necessarily appear 

in everyone, and the severity of the pain, frequency, and urgency associated with IC can vary from reasonably 

manageable to unbearable, making it hard to classify as well as diagnose. No specific marker or test has been 

developed for IC, and it is considered largely a diagnosis of exclusion.

Because of its relentless demands on the body, IC can cause dramatic changes in the lives of people who suffer

from it, making it difficult to maintain a job, making travel impossible, and affecting everything from a person’s

sleep to their sex life. Many patients are house bound. Since patients may void up to 20 times or more at night,

sleep deprivation may be severe and, as a result, depression is common. These changes result in psychological 

misery as well as physical pain. Because the typical IC patient is not diagnosed immediately and has to live with 

the symptoms as well as uncertainty about the condition, patients are not particularly trusting of medical authority.

This is particularly the case when physicians blame the patients and tell them nothing is wrong, since all the tests 

are ‘negative.’ Obviously something is drastically wrong. The test to show this just has not been developed yet. 

The personal toll that IC takes on the lives of its victims and their families is less easy to quantify than 

physi-cal symptoms, but this letter we received from the husband of an IC sufferer will give you some idea:

“Enclosed are three donations made in memory of my wife, Joanna. Joanna was diagnosed with IC on February 22,

1995, though she suspected the disease in December 1994, following a hysterectomy. Like many other sufferers, Joanna 

was told it was in her head after tests turned up nothing. A cystoscopy on February 22 revealed the disease. The extreme

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pain and despair over chances for a cure caused her to end her life on April 8th. We hope that these donations help in 

some small way to find a cure and save others from this fate.” [Joanna was 44 years old, was married for 23 years, 

and had a teenage son.]

Suicides still occur every year, because patients are left to live in severe pain and despair often without a diagnosis or adequate treatment for their pain. The most recent suicide was 2 months ago by a 33-year-old woman.

Since the founding of the Interstitial Cystitis Association (ICA) in 1984, much progress has been made in 

helping to create public awareness for the disease. One of the most important advances for us was NIDDK’s Workshop on IC held in August 1987. It was a unique meeting because it included researchers from many different areas 

in medicine. At that meeting, the results of the first large-scale epidemiological study on IC were presented. This

study was sponsored by the Urban Institute and NIDDK. Statistics derived from the study showed that:

• Approximately 450,000 people in the United States suffer from IC. We believe that this is a conservative 

estimate because there are thousands of patients with the diagnosis of urethral syndrome, trigonitis, or

painful bladder syndrome who clearly fit the IC profile.

• It takes an average of 41/2 years to get diagnosed.

• Thoughts of suicide are three to four times higher than that of the general population. A pilot study 

of 60 patients, done by the ICA 1 year prior to the formal epidemiological study, revealed a 12 percent 

suicide attempt rate. 

• By combining additional medical expenses incurred by IC patients with lost wages because of disability, 

the study calculated the economic impact of this disease to be as high as $1.7 billion per year.

• The life satisfaction rating was lower than the average rating given by female kidney dialysis patients.

• Sixty-three percent of patients experience painful intercourse. Many are even unable to have intercourse. 

This can have a profound effect — not only on a patient’s marriage or prospects of ever marrying — 

but on childbearing abilities as well.

The 1987 NIDDK Workshop set forth an agenda of research priorities, and we’ve made great progress. Since 

that time, six scientific conferences on IC have been held, the most recent one was last month. Dr. Lee Nyberg,

Director of Urology at NIDDK, has been a strong supporter and advocate of IC research and has worked closely

with us to develop a large community of researchers interested in IC. His efforts are restricted by limited funding.

Increased NIH funding is critical if progress is to be made on this debilitating condition. 

The following areas of research must be emphasized if an effective treatment, and ultimately a cure, is to 

be found for IC. 

• Epidemiologic studies must be continued, their data further analyzed. 
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• Basic science research — further study of inflammatory mediators in the urine of patients with IC. 

A substance unique to IC, once isolated, could serve as a marker for this disease. 

• Etiology of IC — still uncertain — further study into bladder urothelium, possible role of an infectious

agent or immunologic process, etc. 

• Neuroinflammatory pathways in IC — including the study of bladder sensory afferents, neurotransmitters,

mast cells, unmeyelinated C fibers, substance P, etc., and development of agents directed exclusively at 

sensory afferents in the bladder. 

• Pathology — subclassify the disease based on bladder biopsy characteristics.

• Further evaluation of possible endocrinological, hormonal, and immunological aspects of IC. 

• Clinical trials of promising drugs.

• Further analysis of the IC Database, a 6-year project which will be completed in Spring, 1998. 

• Developing better educational resources and outreach programs to educate patients and members of the medical

community. One of the reasons that patients are not being diagnosed is that many physicians still believe 

the condition does not exist because they have been trained on inaccurate, outdated information.

• Encouraging researchers to work in this area and establishing research fellowships in this area.

In the last 10 years, great strides have been made toward understanding this disease. Government funding 

for IC research has grown substantially over the last decade. Prior to 1987 there was no federally funded research 

on IC. However, by FY 1996, NIDDK funding for IC research had grown to about $9 million.

ICA has a longstanding productive working relationship with NIDDK. Through the fundraising efforts of 

ICA, small pilot research grants are awarded each year for promising areas of research. Many recipients of these 

pilot research grants have gone on to receive NIH funding. The ICA and the NIDDK jointly sponsor Scientific 

Symposiums on IC, the most recent of which was held in Arlington, Virginia, last month. This was a large-scale

international event including representatives of 14 countries other than the United States. Over 200 clinicians 

and researchers from around the world gathered to report on their findings. On the pharmaceutical front, 

Elmiron®, the first oral drug specifically for IC, was recently approved for distribution by the FDA. ICA’s national

spokesperson, LPGA Tour Player Terry-Jo Myers, has benefited tremendously from this medication, having won 

two major championships this past year after nearly 10 years of playing in severe pain. 

Despite great progress, there is still so little known about the disease. Because IC is a diagnosis of exclusion, 

and because there is no marker or specific test for the disease, the definition of IC remains controversial. For 

this reason, IC research projects are not always deemed to be “safe risks” by the NIDDK study sections. Only 

by gathering more data and by initiating more research will we be able to better define this disease, and then progress 

to its treatment and cure.

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Our need is great. But we are confident that with your help and with increased funding for IC research

through the NIDDK, we will find an effective treatment and, ultimately, a cure for this disease.

Sally A. Rudicel, M.D. American Foot and Ankle Society

The Orthopaedic Health of Women: Foot and Ankle Issues

Foot and ankle complaints are a common source of pain and disability in the United States. It is estimated 

that 43 million people in this country have foot complaints yearly. Fifteen million of these people will eventually

seek medical help, and the majority of these people will be women.

Forefoot pain is a very common complaint in all age groups. In this country, however, problems of the forefoot

occur in women seven to eight times more commonly than men. In a study of 356 healthy women between the

ages of 20 to 60, a stunning 80 percent complained of foot pain. This same study found that 88 percent of these

women were wearing shoes too small for their feet, and that 76 percent of these women had some foot deformity.

The most common forefoot problems are bunions, bunionettes, hammer toes, and neuromas, all of which

occur disproportionately in women. Studies in societies that do not wear shoes have shown that the incidence of

bunions, while much smaller than in our society, is equal in both men and women. Michael Coughlin, M.D. has

done a 15-year retrospective study of his foot practice and found that 80 to 90 percent of these forefoot problems

occur in women. We now have very strong evidence that women’s shoes are a major cause of these deformities.

These forefoot problems are a cause of pain and disability. As the deformities progress, surgery is often necessary. It has been estimated that 75 percent of forefoot surgery in this country is necessary because of constrictive

shoewear. In 1995, approximately 285,000 bunionectomies, 300,000 hammertoes, 80,000 neuromas, and 130,000

bunionettes were surgically corrected in the United States. If 75 percent of these procedures were caused by constricting shoewear, the estimated surgical cost for forefoot problems is $2 billion. If time off from work is included,

another $1.5 billion in expenses is added. These figures are staggering and do not even address the morbidity to

the patients suffering from these problems. All of this for high-fashion footwear.

The American Orthopaedic Foot and Ankle Society and its Council on Women’s Footwear has made major

efforts to publicize this information and educate the public, the shoe retailers, and the shoe manufacturers. However, style and fashion dictate shoe wear. The consumer must be educated about this debilitating health problem.

We also need to investigate more vigorous early preventative measures and look more critically at the benefits 

of surgery.
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Education of appropriate shoe wear needs to begin in childhood, since we know that shoes have an effect on

foot health. Mary Williams Clark, M.D. has been doing some studies of the pediatric population, looking at shoe

trends and foot problems in this age group. In her study, nearly everyone under the age of 18 was wearing low top

sneakers most of the time. However, some girls began wearing high heels as early as age 5, an age where they are

not yet choosing their own shoes, and the incidence of high heel wearing began to rise by age 12. Fifteen percent

of the girls in Dr. Clark’s study population were wearing heels by age 12 years. Pointed toe flats were being worn 

as well, but the length of time in these and in heels was usually less than half of the day. Education of parents as

well as children about shoes is necessary. We also need further studies about changing shoe trends and the effects

on the feet in the long term.

In addition, some businesses have dress codes and requirements for women’s shoes. We need to stress the

health risk this imposes and work toward a change of such policies.

At the opposite end of the age spectrum, Carol Frey, M.D. has done some investigative work on the relationship of shoe wear to falls in the elderly. In this predominantly female population, falls are a huge source of 

morbidity. While a tie shoe is a safer shoe, Dr. Frey has found that even some athletic shoes may be a cause of 

falls. Large lugs which wrap around the toe area of running shoes were implicated in several cases of injury. Also,

outer soles which are wearing down, even on appropriate tie shoes, may cause a problem. Dr. Frey has developed

the Ten Points of Senior Shoe Safety to help educate the public. More effort in exploring this source of injury in 

the rapidly expanding elderly population may bring huge benefits both in the health of the elderly and in better 

use of financial resources.

Rheumatoid arthritis is another entity with a predilection toward women. Women are affected three times more

often than men. About 17 percent of cases of rheumatoid arthritis begin in the foot, and the majority of patients will

have foot problems during the course of their disease. The foot and ankle problems range from bunions, hammertoes, and metatarsalgia, which may be treated with orthotics and shoes, to severe, destructive joint disease that

requires reconstructive surgery. Again, education and earlier intervention may prevent or lessen the formation of

these severe deformities. More investigative work on the primary treatment of the disease may also prove helpful.

When the foot hurts, the entire body hurts, and activity is severely restricted. Foot pains and deformities are 

a common finding in all age groups as our studies show. Forefoot problems in particular, affect women seven to

eight times more frequently than men. We need to look further into the causes of these problems, search for prevention, and educate our population at an earlier age. The Office of Research on Women’s Health can help us in 

the AAOS and AOFAS to play a leadership role in this important aspect of health.

References

Clark, MW. “Who’s the Boss? Shoe Choices of Children and Adolescents. Symposium — Sexy Shoes, Painful Feet.” AAOS 

Annual Meeting, 1994.

Coughlin, MJ. “The High Cost of Fashionable Footwear,” J Musculoskeletal Med (Dec. 1994): 40–53.

Frey, C. Survey on Why Seniors Fall. In publication.

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Frey, C, Thompson, F, Smith, J, et al. “American Orthopaedic Foot and Ankle Society Women’s Shoe Survey,” Foot and 

Ankle 14 (1993): 78–81.

Mann, RA and Coughlin, MJ. Surgery of the Foot and Ankle. Mosby, 1993.

Seale, KS. “Women and Their Shoes: Unrealistic Expectations?” AAOS Instructional Course Lectures Vol. 44 (1995): 379–84.

Thompson, FM and Coughlin MJ. “The High Price of High-Fashion Footwear,” AAOS Instructional Course Lectures Vol. 44

(1995): 371–77.

Rosalie Sagraves, Pharm.D., F.C.C.P. American Pharmaceutical Association

Good afternoon. I am Dr. Rosalie Sagraves, dean of the University of Illinois at Chicago College of Pharmacy. 

I present this testimony as an elected officer of the American Pharmaceutical Association’s (APhA) Academy of

Pharmaceutical Research and Science and as one who, for many years, has been actively interested in research in

the field of women’s health, and specifically the importance of gender-related research to the practice of pharmacy.

As you work to develop strategies “that can result in an improved health status for all women” and to set 

an Agenda for Research, I would like to discuss some specific areas in which I believe the Office of Research 

on Women’s Health can have a major impact. These include:

• gender differences in drug delivery;

• women as care givers;

• “real-world” research;

• population-based care;

• self care and over-the-counter medication use; and 

• cost-effectiveness issues.

Gender Differences

For the researcher, gender-related pharmacokinetic and pharmacodynamic differences are one of the important

issues that this workshop should address. The Food and Drug Administration (FDA) has been concerned for many

years about the failure of research protocols to take into account the different ways in which men and women may

absorb medications and the different rates at which those drugs are distributed, metabolized, or eliminated once

absorbed. At an FDA public workshop on gender studies in product development 2 years ago, it was noted that

gender-related events like menstruation, pregnancy, lactation, and menopause affect the pharmacokinetics/pharmacodynamics of many drugs, as may the use of oral contraceptives and hormone replacement. Yet the clinical 
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literature primarily contains data combined for women and men. Additionally, there is a dearth of pharmacokinetic

and pharmacodynamic studies addressing the use of medications by aging women. Studies tend to be age rather than

gender specific, and focus on just a few drug categories. Papers presented at a symposium on “Gender-Related

Health Issues” at the 1995 World Congress of Pharmacy and Pharmaceutical Sciences, demonstrated that these are

universal problems. Marianne Haselgrave, director of the Commonwealth Medical Association, emphasized that

gender analysis of health issues must be addressed along with life-cycle differences and human rights in order to

improve women’s health. She singled out research on “self-inflicted poor health related to overindulgent lifestyles” 

as equal opportunities for women increase, as well as osteoporosis and other diseases of the elderly. Neil Cummings, a Canadian lawyer who has produced WHO documents relating to health care and law, noted that some

research codes include a “necessity test,” i.e., the drug being tested will only be used in a pregnant or lactating 

population. The proceedings of the symposium have been published and are available at this workshop. 

Despite the FDA’s best efforts to change the culture of pharmaceutical research, pharmaceutical companies

remain reluctant to include women of childbearing age and the elderly (the majority of whom are women) in 

Phase II and III clinical studies. This workshop should produce strong recommendations that ORWH work with

FDA in implementing the latter’s guidelines to ensure that women are included proportionately in future clinical

studies, and that gender analysis be as complete as possible for labeling of commercially available products. Further, ORWH should work with the various institutes and offices within the National Institutes of Health to ensure

that basic and clinical pharmacokinetic/pharmacodynamic studies are carried out for the drugs, to include studying the drug interactions between hormone replacement therapy and various medications, as well as oral contraceptives and medications. In the area of vitamins, which is part of preventive therapy, pharmacokinetic/

pharmacodynamic proposals should examine possible gender differences.

Women as Care Givers

But what happens after a drug is approved? How are the safety and health of the patient protected when 

a medication is prescribed, whether it is new to the market or new only to the patient? These questions are 

particularly relevant to women because some studies have shown that their health problems are often not taken 

as seriously as those of men. This is true whether the problem is chest pain or the failure of a medication to work 

as anticipated. Further, women need access to a variety of health care professionals for more than their own health.

They are also the primary care givers for their families. It is important that this series of workshops end with 

recommendations to provide the tools women need to fulfill this latter function adequately.

As a pharmacist, I know that women need the assurance that the medications they purchase for themselves,

their children, their aging parents, and their husbands, are not only safe and effective, but that they know how to

use them. Advice from a physician or nurse is often forgotten or muddled by the time a medicine is purchased. It 

is important that the pharmacist recognize this and ensure that the care giver leaves the pharmacy with the knowledge she needs to care for her charge. The Take Time To Care program, piloted by the FDA’s Office of Women’s

Health, focuses on this need. In initiating the Chicago pilot program, FDA’s field personnel reached out to colleges,

including my own, to include pharmacy in this initiative which develops programs for consumers about the proper

use of medications. I applaud FDA for identifying prescription medication use as an important women’s health

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issue, and for taking the initiative to involve pharmacists and pharmacy students in educating women about 

their medicines and how to use them. 

“Real-world” Research

An opportunity to expand women’s involvement in clinical research is suggested by the success of demonstration projects in the community pharmacy practice setting. The American Pharmaceutical Association has 

created a Practice-based Research Network of pharmacy practitioners who have the skills and interest to perform

research studies at their practice site under the aegis of principal investigators who may be either physicians or

pharmaceutical scientists. In the first use of the Practice-based Research Network, more than 30 pharmacists are

participating in a demonstration project in which they help patients with dyslipidemia not only to manage their

medication but to modify diet and develop healthy lifestyles to lower their cholesterol and improve lipid levels. 

Preliminary data from this study — Project ImPACT: Hyperlipidemia — show that American’s most accessible

health professionals can make an impressive difference in improving the health of both men and women by 

monitoring drug therapy and by educating patients. Pharmaceutical manufacturers are exploring with APhA 

the possibility of using the Practice-based Research Network in a variety of Phase IV studies.

The skills used by the pharmacists in Project ImPACT: Hyperlipidemia illustrate a new method of pharmacy

practice: pharmaceutical care. Pharmaceutical care builds on the fact that the pharmacist is the most accessible

health professional. The pharmacy is just down the block, is open late, and no appointment is needed. The pharmacist is more knowledgeable about medications that any other health professional — how they work, how they

interact with other drugs and with food, their side effects. Increasingly, the pharmacist is recognized for this knowledge and is using it as a member of a physician/pharmacist/patient triad to manage the patient’s drug therapy. 

The recent discovery that certain weight-loss medications have major, previously unknown side effects is exemplary. Many pharmacists have well-established weight-management programs, often in conjunction with diabetes 

disease management programs, for their obese patients, the majority of whom are women. These in-place 

programs are now benefiting women who can no longer rely on an unsupervised drug regimen to help them 

lose weight. Patients are achieving better health with the assistance of health professionals who are easy to reach,

eager to share their knowledge, and willing to take responsibility for improved outcomes. However, in most cases,

these results have not been validated by rigorous studies. Research recommended by the Office of Research on

Women’s Health could remedy this, providing solid evidence that the cost to society of noncompliance and 

drug misadventures can be sharply decreased if pharmacy services are properly structured and supported. 

Conferences and workshops such as this tend to emphasize the role of the medical profession in the kind 

of care I’ve just described. I would ask that your recommendations take note that other health professionals — 

pharmacists, nurses, physician assistants, etc. — are able to provide effective care in their respective areas of 

knowledge. This single recommendation, if broadly implemented, would go far in improving access to care 

and restraining the cost of health care, while continuing to recognize that the physician leads the team of 

well trained health care professionals.
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It is equally important that both the care giver and the physician have confidence in the pharmacist. 

Additional research into the value of the team approach to health care is much needed. The issue of information exchange between professionals to smooth the continuum of care, particularly in light of emerging 

technologies, is an excellent example of an exciting area for additional research.

Population-based Care

We all know that research is expensive and underfunded in this time of reduced federal spending. Tightly 

controlled expenditures are also a common ingredient of health care delivery these days. This may be one reason

why population-based care is being used more and more in health care settings. Similarly, research studies based 

on meta-analysis are becoming popular. This is of great value to improving women’s health because much data is

available if enough studies are combined. As women (and men, of course) live longer, these data become invaluable 

in reasoning from the general to the specific to improve individual health care. It is important that recommendations from this workshop focus on the usefulness of population-based studies for reasons other than reducing 

costs. Managed care organizations, in particular, must be encouraged to share their databases with researchers 

to make these studies possible.

Self Care

There are some areas of improving women’s health status that do not need additional research but rather a 

different approach. The self-care movement is one example. In their role of care giver, as well for their own health

needs, women are taking charge rather than relying on the experts. They read articles, both scholarly and popular;

they watch health presentations on television; they listen to talk shows; they surf the Internet. And they read the

labels on over-the-counter medications. A recent consumer survey conducted for APhA and Prevention magazine

showed that as many as eight in ten of the nation’s adults treat themselves before calling on a health care professional when suffering from common ills. Where do people seek information about how to choose and use 

medications? Eighty percent read the product label; 75 percent consult physicians; 70 percent ask their pharmacist. What can this conference do to ensure that they are gaining accurate information from reliable sources? 

I recommend that the development of guidelines to help the consumer judge the quality and reliability of available information be one outcome of your work. 

Cost Effectiveness

Finally, the issue of economics must be confronted. Despite a moderating trend, the cost of health care 

continues to increase at a rate above inflation. More research about cost effectiveness and outcomes is essential. 

I encourage you to emphasize research on the fastest-growing group of health care users — the oldest old, who use

the most resources on a per capita basis as they near the end of their lives. Most of these patients are women, and

they would perhaps benefit most from decreasing unnecessary costs of health care. A recent study by Bootman in

the Archives of Internal Medicine estimates that the cost of drug-related morbidity and mortality in nursing facilities

could be nearly halved simply by utilizing the services of consultant pharmacists. An earlier study by Johnson and

Bootman concluded that the cost of noncompliance and drug misadventures to the U.S. economy was nearly 

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$80 billion annually, and suggested that pharmacists taking a more active role in drug therapy management 

would sharply reduce this outlay. Focusing research on pharmacoeconomic issues clearly would do much 

more than merely cut costs. Outcomes and quality of life would be enhanced as well.

Thank you for the opportunity to offer the views of the profession of pharmacy and its clinical research 

arm. I have presented a large agenda, yet it is only a small part of what you will be asked to do over the next 

few days. I believe you will find that most of the presenters here are addressing the same issues; only the perspectives are different. I urge you to look for the similarities among the recommendations you receive, and 

consolidate them into a short research agenda with targeted goals. By so doing, you will benefit us all.

Charlotte (Barney) Sanborne, Ph.D. Texas Woman’s University

During the last decade, much attention has been given to women’s wellness. Even with this current emphasis,

recent statistics suggest that most American women are choosing not to participate in a wellness lifestyle. The 

NIH Office of Research on Women’s Health postulates that inactivity and harmful behaviors lead females to be 

more vulnerable to disease, to experience more severe maladies than men, and to be impacted by health problems 

that are unique to women. In fact, women can significantly reduce the risk of both cardiovascular disease and

osteoporosis with regular physical activity and proper nutrition. Despite this information, approximately 40 percent of American adults lead a sedentary lifestyle. These patterns begin in childhood and are especially prevalent 

in females. The National Children and Youth Fitness Study suggests that today’s youth are fatter, less fit, and less

healthy than 10 years ago. Specifically, there has been a 64 percent increase in obesity in elementary-school-aged

children, thus 15 to 20 percent of American children may be classified as obese. Twenty-seven of every 28 of these

adolescents will continue to be overweight throughout their lifetime. In fact, an earlier onset of obesity (by age 6)

relates to an increased chance of obesity as an adult. Furthermore, the psychosocial ramifications, such as being

ostracized by peers, may contribute to an overweight child’s low self esteem and poor body image. 

Although the principles necessary for a wellness lifestyle have been established, the ability to involve people in

the process of participating in healthy lifestyles is a completely different concern. Early detection and preventative

health strategies are the keys to avoiding a lifetime of medical treatments and financial burdens. For success, this

process must focus on prevention and be multifaceted, ongoing, include all ages, and remove significant barriers 

to health care resources.

Prevention vs. Treatment Research

Health research has, historically, been rooted in a value system that favors understanding of treatment of 

disease over understanding of prevention. The requirements of diagnosis and treatment receive emphasis in the

medical model over the larger picture of health maintenance throughout the life span. While this attitude is presently in a state of transition, it is still apparent in the health care policies and systems in the United States. Such 
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a priority results in disease-specific focus for research. Once the focus becomes a specific disease, the search for

understanding often narrows to a specific discipline or even a subspecialty within a discipline. Such a narrow 

perspective of health, coupled with the financial rewards and career advancement that may be associated with 

successful solutions to medical problems, invariably leads to lack of multidisciplinary collaboration.

Pragmatic Approaches to Curricular Research Design

Even if results of outcomes research prove to be conclusive, challenges still lie in the design of programs that 

can and will be implemented. For example, a successful school-based program must fit into existing curricular

design regarding days and hours per week of health and fitness class time (if they are formally programmed at 

all). Prevention programs for women with multiple roles (family, career, etc.) must be compatible with existing 

life commitments. In addition to program design issues, further research in this area should include health beliefs,

attitudes, and motivations to engage in health-promoting behaviors. Challenges are still evident, for example, in

motivating young people to avoid unhealthy lifestyle choices that contribute to premature death or compromise

quality of life in later years. Longitudinal research remains the most conclusive method for confirming behavior

change and the complex factors contributing to sustained change.

Multidisciplinary Approaches to Research

An interdisciplinary approach integrating primary and specialty care has been proposed as the best way 

for medicine to focus on women as whole people. An interdisciplinary focus includes psychosocial factors as 

well as physical and biological factors. Research shows that health promotion programs, designed to address 

“leading health problems” within any given community, are often ineffective because no preliminary research was

conducted to more clearly identify (a) psychosocial, environmental, and cultural influences upon those problems,

and (b) factors related to the degree to which the targeted community is interested/concerned about the health

problem and willing to embrace efforts to reduce incidence/prevalence. Any research related to the health of 

women should encompass a more comprehensive design which includes a broad, carefully-planned assessment 

of the influence of culture, other psychosocial factors, and the environment in which that community functions.

Such designs should focus upon the community’s potential (i.e., capacity building factors) rather than only 

upon negative contributors. 

Recognizing and addressing these multiple, inseparable influences on health requires new paradigms and 

harbors implications for our understanding of disease causation, therapeutic responses, healing, and the healer/

patient relationship. Further investigation should explore the mechanisms and realities of truly crossing disciplines,

not simply collaborating across subspecialties within a discipline. True multidisciplinary research will bring together

professionals involved in all levels of care, from prevention to diagnosis to treatment to education, to insure a

whole-person exploration of women’s health.

Public Policy Impact on Women’s Health

Another specific research area that needs to be addressed is the impact of public policy on women’s health. 

An example is the Welfare Reform Act of 1996 in which resources have been limited in an effort to decrease 

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unwanted pregnancy. A potential problem is that very often the father of a teenage mother is an adult. The 

pregnancy is really a form of child abuse. This public policy punishes the victim and, at best, assumes the 

victim had some control. Research is needed to examine the impact of public policy on the health of not 

only the mother but also the far-reaching implications on the fetus, baby, and child.

Texas Woman’s University

Texas Woman’s University (TWU) is the nation’s largest public university dedicated to the education and

advancement of women. A teaching and research institution, the university emphasizes the liberal arts and specialized or professional studies. TWU is among the leading providers of health care professionals in the state and the

nation. The College of Nursing is one of the largest in the United States. The School of Occupational Therapy is 

the largest in the nation and has the only graduate program in Texas and the only doctoral degree offered at a public university. The School of Physical Therapy has one of the leading programs in the United States and one of only

four doctoral programs in the nation. Research is one of the missions of the University, along with instruction and

public service. In addition, the library’s Women’s Collection is the largest depository for research material about

women in the south and southwest, and it is one of only three major collections of its kind in the United States.

The Center for Research on Women’s Health at Texas Woman’s University is dedicated to the advancement of

research, education, and advocacy concerning issues related to the physical, mental, and social health of women in

all stages of their lives. The Center exists with the intent to lead in the development, dissemination, and implementation of knowledge about women’s health and well being through ongoing multidisciplinary research programs.

Numerous faculty and students, representing disciplines such as nutrition, textiles, biology, physical therapy, 

occupational therapy, nursing, kinesiology, women’s studies, sociology, and health studies, have contributed their

expertise to research and education efforts in the name of women’s health. One example of the Center’s groundbreaking endeavors involves the current planning, administration, and implementation of a longitudinal women’s

health study, the TWU Pioneer Project. The Pioneer Project is a longitudinal multidisciplinary study that will

involve thousands of girls and women (ages 14 to 60 years) in the state of Texas. An initial assessment and yearly 

followup measurements will be obtained that will help explore the sociological, psychological, and physiological 

status of Pioneer Project participants.

Barbara Seaman National Women’s Health Network

Consumer Participation in Government-funded Research

There is a worldwide movement, gaining momentum, to include greater consumer participation in the 

concept, design, execution, and (perhaps) analysis of medical research, especially where taxpayer funding is

involved. As an editorial by Alessanda Liberati (Mario Negri Institute, Milan, Italy) in the British Medical Journal,

August 31, 1997 observes:
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“The quality and relevance of much clinical research falls short of patients’ needs. . . Even among progressive

scientists and health professionals, a paternalistic attitude still prevails. They do not believe that patients and consumers can improve the decisionmaking process . . . But successful efforts to shift the balance are becoming a 

reality, even in difficult areas such as oncology.”

Diane K. Seay National Association for the Advancement of Women in Science

The National Association for the Advancement of Women in Science (NAAWS) is a student organization 

chartered at the University of New Mexico (UNM). NAAWS was founded in the fall of 1994 in an effort to bring

women scientists together with women science students. The organization provides an arena for scientists to share

their work and the dynamics of career, school, and family. Gloria Sarto, M.D., Ph.D., Professor, Department of

Obstetrics and Gynecology, and Andrea Allan, Ph.D., Assistant Professor, Department of Neuroscience, UNM, 

and Ellen Goldberg, Ph.D., President, Santa Fe Institute, are our advisors.

Shortly after our monthly meetings of NAAWS were initiated, a review of the literature substantiated our 

subjective realization that confidence and an interest in science is best fostered at an early age. Consequently, 

in the spring of 1995, the Girls and Mentors Manifesting Achievement (GAMMA) project was initiated. UNM

women science students volunteered to mentor 5th and 7th grade rural school girls in small groups, generating 

and answering questions which follow the steps of scientific inquiry. Girls were selected from Los Lunas, New 

Mexico, a district that reflects the state of New Mexico in ethnicity. Intervention and control groups were set up. 

Initially, no female 5th graders agreed to participate stating that science was “boring” and “for boys.” At that 

point, it was determined that intervention should include younger girls, and a tiered mentoring system for 

3rd, 5th, and 7th graders was devised.

At the conclusion of each year, students visit various research laboratories of women scientists at UNM. 

A closing ceremony is hosted at the UNM president’s home where girls are given the opportunity to discuss 

their projects in front of peers, mentors, and supporters from UNM.

A fourth intervention is planned for spring, 1998 which will involve approximately 50 rural school girls. 

The GAMMA project would like to make the following observations:

• Rural school girls need to be instructed in science by individuals who themselves have an interest in, 

and inquisitiveness for, math and science. All students should be encouraged to think about scientific 

ideas and concepts in a manner which facilitates their teaching someone else.

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• Rural school girls need not only access to improved electronic methods for learning, but also training 

in the use of these methods by individuals who are themselves comfortable with their capabilities. For

example, in one school district we found a new computer on the floor, unused, because its owner felt 

ill at ease with computers.

• Overall, awareness is heightened by such intervention methods regardless of whether the girls eventually

take more science and math classes or choose math or science careers. Better methods to measure effectiveness of mentoring interventions need to be developed. 

• Rural school girls need increased exposure to women in science. Invariably, the pre-intervention assessment,

which included a task to “draw a scientist,” brought consistent images from the girls of men at work. Postintervention drawings, on the other hand, showed more detail and more images of women scientists. We

must continue to increase public awareness of women in science. While Bill Nye provides an exciting arena 

for scientific exploration on PBS, which encourages both girls and boys, he is still, “the science guy.”

• In order to generate an active rather than a passive interest in science and health issues for their future,

rural school girls must be challenged to think and ask questions, and to develop critical thought processes and perspective.

NAAWS would like to propose that women Ph.D. graduates in science be given the opportunity to teach 

science in elementary, middle, and high schools in rural areas and to receive credit toward student loans just 

as physicians and nurses who choose to work in rural areas do. Additionally, course credit could be given for 

graduate students to teach science in rural schools. In these ways, an excitement for scientific inquiry would 

be fostered and maintained in the rural school setting.

Finally, we would like to challenge every woman scientist to acknowledge the influential part she plays 

in the lives of girls and women she encounters. Your example and encouragement make a difference.

Wesley Segawa Emory University School of Nursing

I, Wesley Segawa, will present testimony on the need for attention on cultural values, beliefs, and spiritual

practices when conducting research or designing health care for women and families. I am an engineer by profession, from the Island of Hawaii, who has had the privilege of participating in federally funded projects by being

named the engineer on record for the design and construction of the National Science Foundation’s Gemini Telescope Observatory at the Mauna Kea Science Reserve, Island of Hawaii. I am also past president of the East Hawaii

Kiwanis International Service Organization. It was during my term as Kiwanis president that I became involved in

learning about the issues involved in the recruitment and retention of women into health care. Our organization,

along with other community businessmen and members of men’s service organizations, collaborated with
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researchers to build and evaluate a prenatal care program that was part of a two-phase research demonstration 

project targeting the improvement of birth outcomes. This project included ethnically diverse women from our

rural island and other urban and rural Hawaiian communities on the Island of Oahu. As president of the advisory

board to the Malama Na Wahine Hapai, or Caring for Pregnant Women, project in Hilo, Hawaii throughout the 

initial 5-year period, my board colleagues and I came to understand the importance of the promotion, respect and 

deference for, and integration of cultural/ethnic ways of knowing and healing into both the conduct of research 

and in helping women to participate in targeted health care programs available in their own communities. 

Ethnic groupings are one of the strongest bonds that connect individuals, such as myself, to the larger island

community. Each ethnic group has certain values, beliefs, symbolic meanings, and sense of spirituality that guide 

our family life, close interpersonal relationships, choices, and decisions. They also shape responses to the surrounding environment. For example, although sex roles are delineated in Japanese traditional families between 

the husband and wife, the actual authority for decisions regarding finances, childrearing, and health care lies 

with women, especially in rural farming and plantation communities. This is not readily apparent to the public,

because this form of deference to the male partner is to uphold and not erode self esteem. When this cultural 

moré is not known by the researcher or health care provider, problems often develop during encounters as 

seemingly simple as obtaining consent to participate in a program.

With this in mind, it should not be surprising that standard modes for interfacing with, and then benefiting

from, the standard medical system in the United States are not always straightforward. For Native Hawaiian people,

researchers would need to understand the significance of “ohana” — extended family affiliation values wherein 

family group responsibilities supersede individual pursuits. Especially during resolution of problems and for coping, it is always about family. Therefore, health care recommendations such as individual psychotherapy may not 

be a culturally sensitive approach when a Hawaiian women is accustomed to the “hooponopono” process involving the entire family values of keeping relationships free of conflict. It is totally unacceptable to resolve conflicts

openly or through Western-style confrontation. Japanese people speak of a similar sense of obligation, called “on,”

that defines Japanese hierarchy. On is predicated on the concept of reciprocity, so that even if there exists a vertical leadership role hierarchy in a family or organization, confidence in a decision is extensively tested through 

a process of consensus. For this reason, reluctance to formulate an individual or unilateral decision when coaxed by 

a health care provider to do so, should be understood within this context when working with a Japanese woman.

These are but two examples of values and beliefs that would impact the inclination or interest in accessing 

a health care program that did not acknowledge the significance of culture in a real way. By this I mean not just

being aware of various cultural attributes and customs, but making concerted efforts to find ways to incorporate

this knowledge into the assessment of health problems and for shaping the interventions. What better way to 

show respect for a person’s sense of humanity and reflect sincerity for preserving an individual’s identity and 

dignity? It is clear to those of us who were observing and collecting data to evaluate the Malama program in our

community, that women who entered and stayed with the program were those who were allowed time to listen 

to their “stories” when desired and provided with the opportunity to participate in developing their own action

plan for health care. 

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For Native Hawaiian women who were enrolled in the Malama program and kept coming back to scheduled

appointments, it was important, therefore, that nurses conducted preferred group sessions, rather than one-on-one,

and incorporated cultural healers into the prenatal care visits to demonstrate such stress reduction strategies as

“lomi-lomi” massage. The so-called “world” view of our people cannot be underestimated. If this is truly understood, doctors and nurses would know that when one of our Filipino women came into care, she may be less 

likely to maintain counseling or psychiatric-type services even if this was initially agreed to. This is because of 

difficulty in identifying emotional factors as the possible basis of a particular health problem. She may, instead

report a dizziness, a touch of flu, spirits, or even a punishment from God, rather than acknowledge the occurrence of depression symptoms that are considered a sign of weakness. It would be important for health care

providers to know that use of an authoritative explanation of what is wrong, what’s to be done, for how long, 

and why would be viewed more positively by Filipino women versus an emphasis on Western approaches 

aimed at understanding concepts of communication, interpersonal relationships, and introspection which 

are considered too esoteric to be accepted. 

While Hawaii’s citizens are seemingly, for the most part, indoctrinated to the American system of health care;

our most recent immigrants face even more difficulties in adapting or accepting the foreign model of health and

health care. For example, I recently spoke to our local public health nurses about health care issues involving the

many Marshall Islanders new to Hawaii. The nurses, although readily allowed into homes, were very concerned

about lack of access and interest in obtaining additional health care by Marshall Islanders, particularly for children’s

immunizations and followup related to carrier status for communicable diseases such as tuberculosis and Hansen’s

disease, also known as leprosy. In this culture, the belief system is very strong that leprosy is a punishment for an 

evil deed. The challenge for the nurses assigned to work with the Marshall Islanders is to incorporate the meanings

of this cultural belief into a culturally relevant intervention design.

I, and the other men living in the Hilo-Puna district of our island, learned several things during our participation in Malama activities. First, including members of the community with the same cultural backgrounds as 

the targeted recipients of the prenatal care program is essential to the success of the endeavor. Our concept of a

Neighborhood Woman’s Health Watch went beyond involving professionals and even semi-professionals in outreach efforts found in typical program recruitment efforts. Instead, Neighborhood Watch members understand 

the cultural expectations of childbearing and childrearing. Those members associated with the Malama project 

are responsible for guiding women in a process of role modeling for healthy behaviors and health care decisionmaking within the family to promote self esteem and gain recognition within the larger cultural community. 

They are also able to understand the stories that help women to describe their personal experience with both 

physiologic and psychologic symptoms of distress during pregnancy. Most importantly, they are often the bridge 

to standard health care systems that today’s women still must contend with in the island communities. 

We also learned that people are more likely to trust standard providers and researchers if encouraged to still

follow beliefs that have meaning beyond the self, but also reflect the need to be connected to family and respected

elders. This level of respect also extends to sacred parts of the environment, especially our active volcano located

on the island of Hawaii. For example, when my neighbor’s wife, who is Native Hawaiian, was pregnant, she was
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protected by the community in not going to watch the volcano. The local islanders wanted to assure the best 

outcome for her baby by encouraging distance from the volcano since it is believed that viewing the fountaining 

of the volcanic eruptions would result in the birth of a baby with a fiery birthmark. In deference to the cultural

elders, she needed to follow this custom and maintain her distance until the baby was born. 

Finally, as a man, I think that it’s important not to leave men out of the equation of understanding the 

broader context of women’s health. In the Malama project, we found that including males, either spouses, 

partners, brothers, or uncles, was important because an interpersonal relationship involves both partners. 

To omit one interrupts the system. It is important that the man’s point of view is acknowledged within the 

context of roles, status, and health within a particular cultural group.

The advantage for men participating in the Malama project was also the opportunity to understand women’s 

points of view. All we know about women is typically what we learned with our own families, and not much 

time was spent on explaining women’s health issues or problems when I grew up. Understanding women’s health

becomes all the more complicated when multiethnic marriages are involved because of conflicts in cultural values. 

For this reason, I believe that men’s relationships with the cultural healers and neighborhood watch members 

were also important to cultivate in our island communities.

Thank you for the opportunity to present my testimony at this public hearing. It is my intention in coming 

to Washington that this presentation would be purposeful in identifying the key factors involved in the promotion 

of current women’s health care through the understanding of the role of culture. We need to keep in mind that 

men are eager to advocate and help develop polices for improving the health status of the important women in

their lives. 

On behalf of my colleagues and neighbors from Hawaii, I hope that efforts put forth by the Office of Research 

on Women’s Health will continue to make the influences of ethnic and culturally diverse lifestyles a priority so 

that women in this era, and their daughters in the next, will be able to directly benefit from the results of this

important work. Thank you for your attention.

Amanda Sherman DES Action USA

DES Action USA is a national nonprofit organization representing an estimated 10 million mothers, 

daughters, and sons exposed to the drug DES (diethylstilbestrol).

The purpose of DES Action USA is to provide education and support to those exposed to DES, to increase 

public awareness about DES so that individuals can discover if they are exposed, and to educate medical professionals so they can provide knowledgeable services to DES-exposed people. We also seek to keep public attention 

on the story of DES as a reminder of the need for vigilance in regard to health care practices.

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DES Action USA and the DES Cancer Network are the only consumer groups to which DES-exposed 

Americans can turn for support, information, and education.

Testimony

Eight years ago we at DES Action USA were alarmed to hear about the impending cutoff of funding for 

DES research at the National Cancer Institute. Some of the comments which circulated included the sentiment 

that DES-related cancer affects a very small number of women, a finite population. We also heard that while 

cancer of the vagina or cervix is certainly a tragic diagnosis, the DES experience represented an anomaly of 

history, with few applications for the larger society.

We were disheartened, though not entirely surprised, to hear this line of reasoning. We realized that DES

Action USA had to accelerate our work and include a campaign to raise awareness about the following points. 

One, that DES exposure has resulted in many disastrous health outcomes, some still under investigation, in 

addition to cancer. These outcomes have affected many more women and men than DES-related cancer. And 

two, that the DES experience contains essential lessons relevant to the entire population in terms of the particular hazards of fetal exposure to estrogen and the powerful potential of endocrine-disrupting chemicals. After 

all, those who have been exposed to DES have been the “canaries in the coal mine” for a number of very important health problems now coming to the fore.

With this in mind, DES Action USA launched a campaign that eventually not only restored and increased 

NCI funding, but also expanded research to include DES mothers and DES sons for the first time. In addition, 

NCI has also broadened the scope of their inquiry to look at many other adverse health effects besides DESrelated cancer. We now seek to answer many outstanding questions, such as the possible effect of DES on such 

bodily systems as the skeletal and immune system, and on the grandchildren of the women who took DES 

while pregnant.

On behalf of nearly 10 million DES-exposed Americans, DES Action USA welcomes the opportunity to present

this testimony and to contribute to the development of a women’s health research agenda. We thank Dr. Vivian

Pinn and the Office of Women’s Health Research for their leadership in developing this agenda for women’s health

research in the 21st century.

Following the discovery of DES-related cancer in 1971, DES was identified as the first known human transplacental carcinogen. One out of every 1,000 DES daughters will develop clear cell adenocarcinoma of the vagina 

or cervix. In addition to this cancer, DES also causes a variety of other grievous injuries, the full extent of which

often remain latent for decades, until a DES daughter or son reaches childbearing age or beyond.

Of an estimated 2.4 million DES daughters, many have been born with reproductive-tract deformities which

include cellular and/or structural malformations of the vagina, cervix, uterus, and Fallopian tubes. These abnormalities cause health problems ranging from infertility to serious difficulties with conception and childbearing.
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DES daughters have five times the risk for ectopic pregnancy (a life-threatening condition), twice the risk 

for miscarriage or stillbirth, and three times the risk for premature labor and delivery. Many will never bear 

a child of their own.

DES daughters who do succeed in becoming pregnant require high-risk obstetric care and are often told 

by their physicians to spend most of their pregnancy in bed. Despite these precautions, many DES daughters 

deliver prematurely which, in turn, increases the risk of serious birth injuries, such as cerebral palsy, or even 

death among third generation DES babies.

Ironically, DES daughters are the most frequent consumers of infertility drugs and reproductive technologies,

thus subjecting ourselves — and perhaps our own children — to yet another round of pharmacological experimentation. This is because the long-term effects of these medical interventions are unknown, and some infertility

drugs are the chemical cousins to DES.

In addition, as the DES-exposed population ages, DES daughters and their physicians face another dilemma

regarding the use of hormone replacement therapy (HRT). What are the risks of HRT for a population previously

exposed to a potent synthetic estrogen prior to birth?

DES mothers, who unknowingly passed on a perilous medical legacy to their children, also inherited one 

for themselves. Studies point to an increased risk for breast cancer in DES mothers.

In April of 1992, the National Institutes of Health, led by Dr. Vivian Pinn through the Office of Research 

on Women’s Health, sponsored the first research conference to identify the medical questions about DES that 

can only be answered by further scientific research.

Preliminary studies presented at the 1992 conference indicated that when DES crossed the mother’s placenta 

it not only harmed the reproductive system of the fetus, but the endocrine, immune, cardiovascular, and skeletal 

systems as well. Also cited were animal studies indicating that DES-exposed offspring manifest adverse health

effects throughout the entirety of their life span.

Researchers suspect that as DES daughters approach middle age they may encounter even greater risks 

for DES-related problems. What will be the long-term risks for this population as they age?

These are some of the key questions that must be included in the DES research agenda:

• Will DES daughters develop an increased rate of breast and reproductive tract cancers, as animal 

studies seem to suggest? 

• Will there be a new peak of clear cell vaginal or cervical cancers? How many DES daughters will 

develop new cases? How many will suffer recurrences?

• What are the long-term effects of fertility drugs on a population already exposed to synthetic 

estrogen in utero?

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• Should DES daughters be candidates for hormone replacement therapy during menopause?

• What are the effects of DES on the immune, endocrine, and cardiovascular systems?

• What are the risks for the third generation exposed to DES?

Further research is desperately needed for these questions and others to be answered. The fact is, no one 

yet knows the full extent of the damage DES may cause. But it is clear that DES does more than wreak havoc 

on the reproductive system. It does more than damage the immune system and cause cancer. It has become 

clear that in utero DES exposure in humans serves as an important model for our understanding of the potential destruction — yet to be fully realized — of endocrine-disrupting chemicals. 

Therefore, we implore you, not only for the sake of the DES-exposed population, but for our collective 

scientific understanding, to learn the answers to all of the questions raised by DES.

On behalf of the affected population and the scientific community, it is my hope that research priorities 

will remain focused on the consequences of DES exposure. This workshop can certainly make that happen.

Thank you.

Eleanor G. Shore, M.D., M.P.H. Harvard Medical School

Program to Increase Representation of Women at all Ranks in Academic Medicine

One year ago, as Dean for Faculty Affairs at Harvard Medical School, I submitted public testimony about 

a new program to provide fellowship support for junior faculty at the most vulnerable point in their academic

careers, i.e., when professional and personal responsibilities conflict. At that time, I documented the lack of adequate representation of women at the higher academic ranks both at Harvard Medical School and nationally. 

Today, I would like to give you a 1-year followup regarding the early effects of this program on the junior faculty 

who were recipients of these fellowships. As background I should explain that as part of the celebration of the 

50th anniversary of the admission of women to Harvard Medical School, private funding from alumni(ae), 

friends, hospital departments, affiliated institutions, and women faculty was secured to provide partial support 

for ten junior faculty members each year for 5 years. The $25,000 awards are intended to buy protected time 

in which the recipients can do research, prepare grant proposals, write papers, or develop a new curriculum. 

Or, alternatively, if they are laboratory scientists, they can purchase the time of a research assistant. Men, as 

well as women, may apply if they can demonstrate similar levels of conflicting personal responsibilities and 

obstacles to their academic work.
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Progress

As of this fall, ten junior faculty have completed their fellowships, and 11 more have begun theirs. More 

than 136 applications were submitted this year for the second round of fellowships. Each recipient is asked 

to complete a report at the end of the year’s work. I would like to quote from one of the reports:

“I think the most important effect of the award on my career and personal life is that having a research assistant

allowed me to apportion my time appropriately to the clinical care that I provide, the teaching that I do as a member of 

our faculty, and the continuation of my clinical research. What happened without a research assistant was that I spent my

time doing the first two aforementioned activities, and wishing I could get the third activity done, but not getting very far. 

In terms of family life, receiving the award has allowed me to be more flexible with my hours and rely on another pair 

of hands to be at the Institute when family needs take precedence.” 

(This quote comes from the mother of twins.)

At a meeting this past October, three fellowship recipients appeared on a panel to discuss in more detail the

effects of their fellowships on their academic careers. The most compelling feature of their individual accounts 

was their description of the leverage the fellowship awards had produced. Department heads regarded their 

academic aspirations more seriously, protected time for academic activities was extended beyond the year of 

the actual fellowship, new collaborations materialized, and more departmental support was forthcoming for 

their research. 

We have been particularly pleased to see that there has been a spin-off effect from this effort. A separately 

funded set of fellowships for basic scientists in the Faculty of Medicine at Harvard was, after a careful examination 

of the Fiftieth Anniversary Program for Scholars in Medicine, announced with a particular emphasis on women

applicants. Of the seven $50,000 fellowships offered in June 1997, four were awarded to women. Similarly, at 

an affiliated hospital in Boston, three fellowships were awarded to women with academic promise and these 

same obstacles to their academic careers. 

Summary

It is our view that it is unconscionable to allow talented women (and men) to wither on the academic vine

when a modest amount of support could maintain their academic careers and preserve their capacity to contribute 

to the research and teaching that are absolutely vital to the future of medicine.

While these fellowships have already had a leverage effect for the recipients, they touch only a small fraction 

of the women and men who need help at this particular phase of their careers. The same problem is certainly

occurring in academic medical centers all over the country. A nationally funded, competitive fellowship program

that acknowledges this time limited, but serious, problem when promising academic careers may be stifled without

temporary support for academic activities, would go a long way toward strengthening the talent pool for future

medical research and teaching. It would also help to diversify the senior faculty ranks by preventing the loss of

junior women faculty who are well trained and motivated but temporarily in need of assistance to overcome the

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very real pressures created by the need to teach, do research, prepare manuscripts, submit grant proposals, and

take care of patients at the same time they are beginning to assume greater family and other personal responsibilities. The country can not afford to lose this talent.

Amanda Spitler American College of Rheumatology

The American College of Rheumatology (ACR) is an organization of physicians, health professionals, and 

scientists that serves it members through programs of education, research, and advocacy that foster excellence in 

the care of people with arthritis, rheumatic, and musculoskeletal diseases. Many of these diseases — including

rheumatoid arthritis, systemic lupus erythematosus, scleroderma, and Sjögren’s syndrome, as well as osteoarthritis 

and osteoporosis — affect women disproportionately compared to men. The reasons for this disparity are not 

well understood, but there is evidence that the reasons are not just hormonal, but may reflect gender differences 

at the genome level via control of gene expression.

Last March, the Office of Research on Women’s Health (ORWH) sponsored the Arthritis and Osteoporosis 

Seminar, which brought issues relating to gender differences in both arthritis and related rheumatic diseases and

osteoporosis to the forefront. Significant gaps in knowledge currently exist, both with respect to women’s health

issues and gender differences, in disease that affect both sexes. In addition, better methods are needed in order to

detect and to track the course of these diseases. These are chronic diseases, and therefore, these patients need a 

supportive network with input from education, physical therapy, and nursing, as well as from physicians. As the

institute whose research mandate encompasses arthritis and related diseases and osteoporosis, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has taken a leadership role in supporting research 

in these areas, including research specifically focused on gender differential aspects. ACR is pleased to have the

opportunity to provide our views to ORWH concerning the state of knowledge and future priorities in these

women’s health disease areas.

Osteoarthritis or degenerative joint disease, the most prevalent form of arthritis, ranges from mild to severe 

and can cause pain, stiffness, and tenderness in and around the joint. It commonly affects joints which contain 

cartilage, with the most commonly afflicted ones being the hands, feet, knees, and hips. Osteoarthritis, in most

instances, causes the cartilage to fray and wear, and in extreme instances, completely disappear resulting in a 

loss of function of the joint. ACR estimates that osteoarthritis affects more than 16 million Americans, with 

women being three times more likely to develop the disease as compared to men. Contributory factors that 

encourage the onset of this disease may include age, injury, obesity, and genetics. 

Currently, NIAMS and ORWH are supporting research on the effects of certain antibiotics, particularly 

doxycyline, on the progression of osteoarthritis. In every instance where doxycycline was used, researchers 

found that the cartilage breakdown was reduced. Furthermore, doxycycline at higher levels tended to stimulate 
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cartilage growth which suggests that doxycycline could prove to be an effective treatment for patients with 

both osteoarthritis and rheumatoid arthritis. 

Rheumatoid arthritis (RA), a less common variation of osteoarthritis, but by no means rare, occurs in about 

1 percent of the population (over 2 million people). Similar to osteoarthritis, rheumatoid arthritis occurs in women

about three times more often than men, and often attacks people in the very prime of life — between the ages of

20 to 45 years. While the disease can occur at almost any age, the peak incidence in women is between the ages 

of 40 and 60 years. The consequences of rheumatoid arthritis are far reaching as more than two million work days

are being lost each year due to this disease. Additionally, total health care costs for individuals who are afflicted

with rheumatoid arthritis average three times higher than for those who do not have the disease. In a joint with

rheumatoid arthritis, the synovium, or joint lining, becomes inflamed, leading to the destruction of joint tissue

(synovium and cartilage), which results in chronic pain and deformity. Pain and stiffness, weight loss, decreased

appetite, and tender swollen joints, especially in the hands, wrists, shoulders, hips, knees, and feet, are common

symptoms of rheumatoid arthritis. Possible causes may include a genetic susceptibility to the disease, combined

with environmental factors such as bacteria or viruses.

Recently, researchers have been focusing their efforts on the viral and bacterial causes of this disease. They 

have uncovered evidence for the induction of rheumatoid arthritis by a protein fragment that is present in a bacterium. In laboratory experiments, NIAMS-supported scientists found that cells in joint fluid from patients with

early RA had strong immune responses to a bacterial protein fragment, but cells in joint fluid from normal subjects did not. The abnormal reactivity of cells in the joint fluid of early RA patients could play a significant role 

in the development of the disease and may lead to new strategies for delaying its progression.

Additionally, researchers have made advancements in discovering the treatment for RA through the identification of the genes involved in its onset. Through a study of laboratory rats with collagen-induced arthritis (CIA),

researchers found that the genetic basis of CIA bears a striking similarity to what is known about the genetics 

of RA in humans. The identification of specific genes may provide new insights into the biochemical pathways 

underlying this disease and may provide new targets for treatment or prevention. 

Lupus, an inflammatory autoimmune disease characterized by excessive production of antibodies directed

against the body’s own tissue, has been shown to damage kidneys and other organs, attack brain cells causing 

convulsions and psychosis, and lead to phenomena that can cause clots in the lungs and stroke. Symptoms 

can range from mild to severe with the disease being highly variable; a patient can be in a period of remission 

and then suddenly go into a crisis. Lupus may cause weight loss, fever, fatigue, aching, and weakness and may

involve different organ systems such as the central nervous system, the heart, lungs, kidneys, muscles, and joints. 

Less common than either osteoarthritis or rheumatoid arthritis, lupus affects about 130,000 individuals in the 

United States. Improved methods of diagnosis are uncovering more patients with a milder form of the disease. 

The disease affects women approximately nine times more often than men, strikes during their reproductive 

years, and can affect both older men and women. Its frequency is higher in African Americans and Hispanics, 

with African-American women experiencing more outbreaks than Caucasian women.

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On November 6-8th of this year, several NIH institutes, the NIH Office of Research on Women’s Health, and

the Systemic Lupus Erythematosus Foundation sponsored a scientific workshop on “Novel Perspectives in SLE:

From Basic Research to Clinical Application.” Over 400 scientific professionals and members of the public interested in lupus research attended the 3-day conference. Research into the cause of lupus has focused primarily on the

genetic susceptibility of individuals. Studies have been conducted where investigators examined three genes that 

are important for normal immunity. Their findings indicate that more than one gene may be involved in conferring

susceptibility to lupus and emphasize the complexity inherent in identifying the genetic basis of the disease. Additionally, studies conducted by NIAMS-supported researchers have identified a gene associated with increased risk 

of lupus kidney disease in African Americans. Variations in the gene affect the ability of immune cells to remove

potentially harmful molecules from the body. This finding is a significant step towards enabling physicians to 

predict who is at risk for lupus, its complications, and steps to take to minimize that risk.

Improved treatment of kidney manifestations of lupus has been demonstrated on a clinical level, using

syclophosphamide for the prevention of kidney failure. Progress is also being made in animal models for lupus 

to identify an immunogenetic component at the molecular level. A gene on chromosome 1 has been linked 

with susceptibility to lupus in Caucasians, Asians, and African Americans. In addition, since lupus affects 

women of childbearing age, the role of pregnancy on the course of this diseases must be investigated. Questions include whether pregnancy modifies the course of the disease or changes disease outcome. A clinical 

trial known as SELENA (Safety of Estrogen in Lupus National Assessment), is being funded by NIAMS, 

ORWH, and the Office of Research on Minority Health. The results of the trial will provide scientific evidence 

concerning the safety of providing oral contraceptives and hormone replacement therapy (HRT) to women 

with systemic lupus erythematosus.

Scleroderma, also known as systemic sclerosis, is a condition that can affect many organs and tissues in 

the body, particularly the skin, arteries, kidneys, lungs, heart, gastrointestinal tract, muscles, and joints. It is 

characterized by inflammation and excessive accumulation of the structural protein collagen, which leads to 

thickening or hardening of tissue. Women are affected four times more often than men by this serious and 

sometimes life-threatening disease. Scleroderma means “hard skin,” which is one of its most striking visible 

symptoms. The skin becomes tight and thick, affecting the fingers, hands, face, and extremities. The cause 

of scleroderma is unknown and often times it is a slow progressive disease which can be controlled in some 

cases. However, in rare instances, the disease may progress rapidly, causing death due to heart, kidney, or 

respiratory failure. Raynaud’s phenomenon, which causes discoloration of the hands and feet upon exposure 

to cold, is the most common first symptom of scleroderma.

In addition, to facilitate and enhance both basic and clinical research on scleroderma, NIAMS awarded for 

the first time a grant for a Specialized Center of Research (SCOR) on Scleroderma, with support from ORWH. 

SCOR provides for a coordinated research effort that strongly emphasizes basic research and an interaction 

between basic and clinical investigations.
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A group of NIAMS-supported researchers recently introduced a mutation into laboratory mice that is designed 

to block the normal collagen breakdown that is part of tissue remodeling. During the first 7 months, the mice

experienced no abnormal symptoms. However, they then began to develop thickened skin and patchy hair loss 

due to skin fibrosis, resembling human scleroderma. The scientists subjected collagen taken from these mutant

mice to a wide variety of tests; in so doing, they discovered a new cleavage site on the collagen molecule. They 

concluded that the newly discovered cleavage site permitted normal remodeling only during development and 

early postnatal life and that cleavage at the mutant site was necessary for subsequent remodeling of skin tissue. 

If similar mutations occur in humans with scleroderma, this mouse model should provide a powerful tool for 

further investigating the dermal fibrosis found in scleroderma.

Osteoporosis, characterized by low bone mass, has recently come to the forefront of women’s health due to 

the disproportionate occurrence of the disease in women compared to men. Osteoporosis affects women four 

times more frequently than men, and postmenopausal women are among the most susceptible. With the onset 

of menopause comes estrogen loss, which has been shown to trigger rapid bone loss. This reduction in overall 

bone mass results in fractures occurring in the wrist, spine, and hip. About half of the people who break their 

hips end up in nursing homes, and in the year following the fracture, 20 percent will die. The lifetime risk of 

death due to hip fracture is comparable to the risk of death from breast cancer. Vertebral fracture can lead to 

deformity of the spine, chronic back pain, and a loss of height. Additional factors which cause the onset of 

osteoporosis include ethnicity — Caucasian and Asian women characteristically begin with a lower adult bone 

mass; high consumption of alcohol and caffeine; having a family history of osteoporosis; and taking certain 

drugs such as corticosteroid and thyroid medications over a long period of time. 

Unlike the aforementioned diseases, osteoporosis is a disease which is entirely preventable. Adequate calcium

consumption, weight-bearing exercise, and an overall healthy lifestyle are a few of the ways in which this disease

can be prevented. Perhaps the most significant ally in the fight against this disease is estrogen replacement therapy.

Since it is highly effective against osteoporosis as well as heart disease, taking estrogen at menopause may also 

protect the brain from Alzheimer’s disease. Since women who take estrogen can reduce their fracture risk by 

50 percent, osteoporosis need not be considered an inevitable part of aging. Rather, it is a highly diagnosable 

and treatable disease.

Researchers are continuing to study and search for improvements as to how to treat and prevent the onset 

of osteoporosis. The discovery of valuable new technologies concerning early detection continues to be ongoing.

NIAMS-supported researchers have found that a quantitative ultrasound is a valuable technique for measuring 

bone mineral density. This technique is one that offers a faster, cheaper, and radiation-free alternative to other 

measurements of bone mineral density for the assessment of osteoporosis. Additionally, HRT has recently emerged 

as the cornerstone for the goal of prevention of this disease. A study conducted by NIAMS staff analyzed the cost 

savings due to the fracture-sparing effect of HRT. This analysis was based on NIAMS-supported research showing 

that HRT reduced the relative risk of osteoporosis fracture. 

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Finally, possible health impact of breast implants is an important issue which NIAMS has recently addressed.

NIAMS organized a scientific workshop to examine and discuss the available data on the issue against a background of earlier studies that found no association between implants and well-defined rheumatic disease, and 

to address the “lingering question” as to whether there is an association between silicone breast implants and 

an atypical form of rheumatic disease. 

A group of scientists and clinicians, who had not yet formulated an opinion on this issue, debated whether 

atypical forms of rheumatic diseases can be defined and whether there is reason to believe that a possible association may exist between atypical connective tissue disease and silicone breast implants. They acknowledged the 

need for the development of diagnostic criteria for atypical rheumatic disease and for additional basic research on 

the components of silicone as well as biological responses to silicone. In addition, NIAMS hopes to promote basic

research on host responses to materials used in medical implants by participating in an NIH Request for Applications on tissue engineering, biomimetics, and medical implant science.

ACR is pleased to have the opportunity to provide our views to ORWH concerning the state of knowledge 

and new priorities in research on arthritis, related rheumatic diseases, and osteoporosis. We continue to support 

the efforts of ORWH in contributing to the NIH women’s health research agenda.

Donna E. Stewart, M.D., D.Psych. The Toronto Hospital

Informed Medical Decisions Group in Women’s Health 

The Toronto Hospital, Ontario Cancer Institute, Princess Margaret Hospital (TTH, OCI, PMH) Women’s 

Health Program focuses on seven priority areas: women and cancer, cardiovascular disease, neurosciences, 

organ transplantation, mental health/eating disorders, and reproductive health. The program focuses on research, 

education, and health care delivery and policy to adult women. The Joint Oncology Program, with the Ontario 

Cancer Institute and Princess Margaret Hospital, has added special strength to programs in cancer prevention,

screening, diagnosis, treatment, and survivorship in women. 

The Toronto Hospital is Canada’s largest teaching hospital with over 1,200 beds, and the Ontario Cancer 

Institute and Toronto Hospital Research Institute constitute large reservoirs of expertise in basic science, and 

translational and clinical research. The hospital’s past successes include the discovery of insulin, heparin, electron

microscopy, heart pacemakers, artificial kidneys, artificial heart valves, coronary care units, and a long list of 

accomplishments in organ transplantation.
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Research

In 1996, the TTH, OCI, PMH Women’s Health Program at the University of Toronto obtained over $9 million

in research grants supporting studies in women’s health. Research projects range from basic biological sciences to

clinical projects including the context of women’s health, decisional science, psychosocial behavior, and qualityof-life concerns. Our methodology includes quantitative and qualitative methods, surveys, and analysis of databases. Our multidisciplinary and multispecialty team conducts research from bench to bedside. 

Our Informed Medical Decision Group in Women’s Health, with a core team from clinical epidemiology, 

health psychology, neurosciences, women’s health, pharmacology, health administration, sociology, nursing,

bioethics, obstetrics and gynecology, surgery, family medicine, internal medicine, anesthesia, and oncology, is 

central to our work. This group participates in quality-of-life studies, cost-effectiveness studies, the effects of 

drugs in pregnancy and lactation, drug side effects, health psychology, information needs, decisional sciences,

choice and compliance, education, and postmenopausal health studies. 

Current research grants involve women and cardiovascular disease and study gender differences in symptoms,

presentation time, treatments, and outcomes in tertiary and community hospitals (Heart and Stroke Foundation 

of Canada). Cancer research involves gender differences in cancer information, decisional preferences, and quality

of life (National Cancer Institute of Canada). We are currently the lead investigators in a national Canadian project

looking at the implications on insurance of genetic testing for breast cancer (Canadian Breast Cancer Research Initiative). Studies in transplantation currently look at equal access to transplantation by women and whether women

choose organ transplantation for the same reasons and frequency as men. Our neurosciences research includes projects on epilepsy in women and differences in cognition and choice. Autoimmune disease research, conducted

through the Centre for Prognostic Studies in Rheumatologic Diseases at The Toronto Hospital, is studying the accelerated pace of arteriosclerotic disease in women with lupus erythematosis. Mental health research includes studies 

of depression, anxiety, eating disorders, and psychotropic drugs in women. Reproductive sciences research includes

postmenopausal health and decisional determinants of prevention and treatment, advanced reproductive technology, and psychosocial screening for pregnant women at risk for adverse postpartum outcomes. The Women’s

Health Program’s information needs and concerns surveys, and decision studies have resulted in consultations 

to a number of local, national, and international groups. Publications in widely cited journals (e.g., New England

Journal of Medicine) have resulted in widespread impact.

Education

Education is vitally important to women involved in informed medical decisionmaking and self care. Equally

important to the Women’s Health Program is educating health care professionals and policymakers. The Women’s

Health Symposia Community Education Series won the prestigious 1996 Pharmaceutical Manufacturers of Canada

Elan Award (with Ortho-Janssen) for excellence and innovation in promoting and advancing women’s health. 

In November 1997, the program received the Commonwealth Award for Excellence in Women’s Health — a competition with applications from across the British Commonwealth. This unique community series of women’s 

health symposia, a partnership between community, hospital, university, and industry, was inaugurated to address

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identified needs of public health education and consumer-motivated research projects in women’s health. Needs

questionnaires identify the topics of greatest interest and importance to women, and ongoing evaluation shapes 

the format and content of symposia. The symposia have resulted in ten funded, women-identified, research projects which are currently ongoing. Improved clinical care and teaching in women’s health are additional outcomes.

Although this symposia series has been operating for only 3 years, it has had a major impact through dissemination by five women’s health television documentaries, aired nationally and internationally, audio cassettes, transcribed proceedings, and over 300 media interviews resulting in television, radio, newspaper, and magazine articles. 

We have also been active in health provider curriculum reform for women’s health including participation 

in the National Academy for Women’s Health Medical Education, the American Association for Medical Colleges 

initiative on professional development for women, and numerous international and national presentations on

women’s health to professional audiences. 

Women’s Health Services and Policy

Our advocacy for exemplary women’s health services has resulted in consultations to a wide range of international, national, and local health providers, educators, researchers, and policy advisors. We are also involved 

in the analysis of existing databases to determine possible gender differences in cause, course, treatments, and 

outcomes for a variety of diseases and disorders.

Summary

It is our belief that through consumer and professional education about women’s health, women and their 

health care providers will become more knowledgeable and responsive to women’s special needs. Research in

women’s health will further inform us of women’s gender differences, preferences, and best practices. Our 

informed decisionmaking group is central to the delivery of health information to women and advocacy for 

them to participate in their desired degree of informed medical decisionmaking.

Deborah Studen-Pavlovich, D.M.D. American Association of Dental Schools

My name is Deborah Studen-Pavlovich. I am a pediatric dentist and an associate professor at the University 

of Pittsburgh, School of Dental Medicine and the Enid Neidle Scholar-in-Residence at the Division of Women 

and Minority Affairs at the American Association of Dental Schools (AADS). I am pleased to present this testimony to the Office of Research on Women’s Health (ORWH) and commend your efforts to expand opportunities 

for women in biomedical careers through the recruitment, re-entry, retention, support, and advancement of 

women scientists.
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The AADS represents all of the nation’s 55 dental schools as well as advanced education programs in dental

schools and hospitals, and allied dental education programs. It is in these institutions where future dental practitioners, educators, and researchers are trained; significant dental care provided; and the majority of dental research

conducted. The AADS is the one national organization that speaks exclusively on behalf of dental education. 

Identifying and representing women’s issues is a priority for the association.

My remarks will focus on the needs of female dental researchers. I will first:

• Discuss the difference between dental and medical education.

• Discuss women’s presence in dental school programs, in postgraduate clinical training and research 

training programs, and in faculty positions.

• And, finally, I will provide recommendations by AADS to support female dental scientists.

Differences Between Dental and Medical Education

Distinct differences exist between dental and medical education, and these differences have significant 

implications for the training of dentists.

Unlike medicine, no requirement exists for a dental school graduate to pursue postdoctoral or advanced 

education. Considering the rigorous dental school curriculum, and accumulated debt of dental graduates (average

graduating debt was $81,688 in 19961), it is surprising that despite such debt nearly 60 percent of recent graduates enroll in some form of advanced dental education. Annually, approximately 1,500 dentists begin a general 

dentist residency program and nearly an equal number begin clinical specialty programs.2

If dentists elect to enroll in a research training program, they pursue the program in a period equivalent to 

a medical residency. This is in contrast to physicians whose research training is a postresidency endeavor. Before 

the National Research Service Award (NRSA) program, postgraduate training centered around clinical specialty 

training. Legislation that limits NRSA training to 3 years of postdoctoral research experience is a significant 

problem for oral health research scientists. A dentist awarded a training grant seeking a Ph.D. requires more 

than 3 years, especially when concomitant clinical training is involved. Recruitment could be increased if the 

legislated limit were removed. 

Additionally, dentists have a disincentive to pursue training as clinical investigators. Whereas, the physician

receives a salary and benefits as a hospital resident and subspecialty fellow, the dentist’s similar payment is limited

largely to hospital-based training programs in oral surgery or oral pathology. Training in other specialty areas 

rarely offers compensation and may even require tuition payment. 

Finally, even though the National Institutes of Health (NIH) comprises the largest single source of support 

for postdoctoral research training of physicians, a variety of private foundations, agencies, and corporate-related

organizations fund the training of physician-scientists. However, the National Institute of Dental Research (NIDR) 

is the only funding source, through its NRSA programs and Dentist-Scientist Awards, that support oral health

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research or training specifically for oral health research. Continued support of training through NIDR is essential 

to continued improvement of oral health research scientists.

Women’s Presence in Dentistry

Historically, women have been substantially underrepresented in the field of dentistry. In 1982, of all of the

professionally active dentists, only 3 percent were women.3 By 1995, the percentage rose to 12 percent.3 A critical

need for aggressive efforts to increase the number of women in dentistry exists. United States dental schools are

working to increase the number of women entering the dental profession. Female enrollment at dental schools 

continues to grow with the total number of women exceeding 36 percent in 1996.4 However, women are still 

a minority on almost every dental campus.

An increase in female enrollment in advanced dental programs is also occurring. Women accounted for 

30 percent (1,433 women) of all the dentists in postgraduate training programs.2 This increasing proportion 

of female dental postdoctoral students may make it possible for women to acquire a larger share of the faculty 

positions at U.S. dental schools.

The dilemma of underrepresentation is particularly severe among dental school faculty and administrators.

Presently, no woman is the dean of a dental school in any of our 55 institutions. And historically, only one woman

has ever held such a position. Only 6 percent of the department chairs are women.5 From personal experience, 

this figure is often inflated.

Exact comparisons of data with other professions are not always consistent because data-reporting methods

vary. Nevertheless, overall trends can be seen by the following statistics:

• Of the 178 law schools, 28 percent of the faculty are women, as are 40 percent of the associate 

professors, and 17 percent of the full professors.6

• In medicine, 20 percent of the associate professors and 10 percent of the full professors are women.6

• At the 55 U.S. dental schools, 15 percent of the associate professors and 5 percent of the full 

professors are women.6 With regard to female faculty, dental schools are clearly lagging behind 

other professional institutions.

A database on dental educators, compiled by the AADS, provides the best available information on the oral

health research labor force. This database includes all faculty appointments to U.S. dental educational institutions

and is updated annually. It includes information on age, gender, race, academic rank, appointment status (full or

part time), academic degrees held, and area of primary appointment. Analysis of this database showed that the

average age of oral health research scientists increased from 47.3 to 49.1 years of age from 1986 to 1992.7 During

this same time, the percentage of these scientists who identified their primary appointments as clinical sciences

decreased from 44 percent to 36 percent (comparative figure for all full-time faculty is 58 percent).7 Finally, the

portion of these scientists who entered and left was more than one-third of the total. These analyses indicate that
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oral health research scientists are a somewhat aging group who leave dental education and contribute to an 

acute shortage of dental educators and oral health researchers. 

The most recent data for fiscal year 1993 (1992 for trainees) indicate that, overall, the success rate for competing research project grants (RO1 and FIRST awards) has been declining. The success rate for both women and

men was 18 percent, although for renewal applications it was 40.2 percent for men and 38.4 percent for women.8

In fiscal year 1993, 16.4 percent of research grant dollars went to women, compared with 10.2 percent in 1984.8

However, total dollar amounts of competing and non-competing grant awards to women are significantly less than

those for men. Of particular concern to AADS is the fact that the success rate for competing research projects 

is lowest for women at NIDR as compared with all other institutes at NIH.

Success rates for funded grants are higher among scientists with a dental degree and a Ph.D. Therefore, 

special initiatives are needed to allow women to enter these research training opportunities so they can approach

the level of their male counterparts. An alarming shortage of research-trained, full-time female dental faculty exists

at our dental schools. To alleviate these shortages, enhanced resources and cooperation and collaboration between

institutions and NIH need to occur if we are to improve the oral health of the American people as mandated by

Congress for the 21st century. 

Recommendations

To meet current and anticipated needs from qualified female dental researchers in academic dentistry, 

our organization recommends the following:

• Stimulate interest in dental careers among young women through specific outreach programs, starting 

in the elementary school years with an increasing emphasis through high school and college.

• Establish research mentoring programs in magnet high schools for female teenagers to be linked with 

university oral health researchers. Some dental schools have initiated these types of programs, but 

NIH support for these efforts by identification of oral health researchers who would be interested 

in participating would only enhance these programs.

• Expand the clinical research fellowship program to train women dentists to research expertise level 

to investigate clinical areas such as epidemiology, behavioral medicine, and health services research. 

The NIH study sections are so focused on basic sciences that a new section needs to be formed that 

would focus on clinical areas of oral health research.

• Increase the number of positions in the 5-year Dentist-Scientist Award program and the NRSA training 

and fellowship programs to accommodate the increasing pool of women dental school graduates interested 

in research careers.

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• Expand short-term research experiences (T-35 mechanism) to attract female dental students into research

careers. Explore whether this mechanism can be extended to retraining and/or re-entry. Currently, this

mechanism is limited to 4 percent of NRSA funds.

• Develop research grants for other advanced dental education programs such as pediatric dentistry, periodontology, orthodontics, or any of the other specialties (most grants cover oral and maxillofacial surgery 

and oral pathology positions). This should establish and strengthen research training capabilities in all 

of the specialty areas.

• Provide supplemental research opportunities at a critical career stage (for example, a career interruption 

to accommodate family responsibilities or relocation requirements). These supplements would be designed 

to support women dental scientists who had demonstrated excellent research potential, but interrupted

their careers for family care responsibilities. Such grants would allow re-entry candidates to update their

skills and advance toward becoming independent investigators.

The American Association of Dental Schools thanks you for this opportunity to provide testimony to the 

Office of Research on Women’s Health. We encourage you to support programs for women to achieve career 

goals in dentistry and oral health research.

References

1 Survey of Dental Seniors, 1996 Graduating Class, American Association of Dental Schools.

2 Survey of Advanced Dental Education, American Dental Association, Survey Center, 1996-97.

3 1995 Distribution of Dentists in the United States by Region and State, American Dental Association, Survey Center, 1997.

4 1995-96 Survey of Predoctoral Dental Educational Institutions, American Dental Association, Survey Center, 1996.

5 1996-97 Directory of AADS Institutional Members, American Association of Dental Schools, 1997.

6 Women in U.S. Academic Medicine Statistics, American Association of Medical Colleges, 1995.

7 Solomon, ES. “The oral health research work-force,” J Dent Educ 58 (1994): 284–6.

8 Women in NIH Extramural Grant Programs, NIH Publication 95-3876.

Laura Lowe Tosi, M.D. American Academy of Orthopaedic Surgeons

The Orthopaedic Health of Women: Osteoarthritis, Osteoporosis, Sports Injuries, and Frozen Shoulder Syndrome

The American Academy of Orthopaedic Surgeons (AAOS) is pleased to have the opportunity to present 

testimony to the Office of Research on Women’s Health (ORWH) Conference “Beyond Hunt Valley: Research on

Women’s Health for the 21st Century.” Since its inception in 1988, ORWH has had a great impact on increasing 
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the awareness of researchers and the public about the importance of women’s health, the nature of women’s 

health issues, and the need for more research. While we celebrate these achievements, we are reminded that 

our job is not done. 

Women’s health issues span a broad spectrum; a spectrum that includes disorders and conditions of the 

musculoskeletal system — the joints, bones, tendons, ligaments, and muscles of the body. The American Academy 

of Orthopaedic Surgeons provides education and practice management services for orthopaedic surgeons and allied

health professionals. The Academy also serves as an advocate for improved patient care and informs the public

about the science of orthopaedics.

AAOS is concerned with women’s health issues not only because its physicians are committed to providing

quality health care but also because several prevalent diseases of the musculoskeletal system are disorders occurring predominantly in women. Therefore, orthopaedic surgeons encounter women’s health issues frequently. To

provide their patients with the best possible care, they must be knowledgeable about the disorders and apply 

the latest research regarding etiology, pathogenesis, diagnostic techniques, and treatment regimens.

This testimony will address what is known, the gaps in knowledge, and suggested future research directions

about four conditions, prominent both by virtue of their prevalence and cost to society, that occur predominantly

in women. While arthritis and osteoporosis are conditions that manifest themselves mostly in older women, young

women are not immune to musculoskeletal disorders. The conditions under which osteoporosis emerges are present in childhood when young girls are building their peak bone mass. Also, as young women participate to a

greater extent in sports, more sports-related injuries are occurring. Although not as prevalent as arthritis, osteoporosis, and sports injuries, frozen shoulder syndrome remains one of the most common, yet least understood 

conditions affecting the glenohumeral joint. That just four areas within musculoskeletal disorders affect more 

than 40 million American women commands our attention.

Arthritis

Arthritic and arthralgic conditions, representing a group of 100 or so disorders of the tissues of the joint, 

are the most common and disabling conditions among women. They occur particularly after middle age and 

their prevalence increases with aging. Because of their increased prevalence in the older population, the aging 

of the population, and the greater longevity of women, these conditions currently have, and will increasingly 

have, a substantial impact on the practice of orthopaedics as we enter the new millennium.

Affecting 30 million Americans, osteoarthritis is the most common form of arthritis and the most frequently

reported chronic condition among the elderly. Nearly half of America’s elderly suffer from osteoarthritis and 70 

percent of those over 65 years of age do as well. It is up to four times more common in women than men, a ratio

that increases with age. Although several risk factors (age, female sex, trauma, exercise, obesity) have been associated with osteoarthritis, more information is needed and additional recently recognized risk factors (diet, biomechanical factors, ligamentous stress, neuromuscular function) warrant exploration. While these associations 

have been identified, the etiology of osteoarthritis is not yet fully understood.

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The impact of these conditions on the American health care system is enormous. Estimated to have cost 

society $54.6 billion in 1988, one can be sure this figure is substantially larger in 1997. The costs arise from medical care, lost productivity, and disability, with $6 billion spent annually on nursing home care alone. Of course,

these costs do not even address quality-of-life aspects, or the pain and functional limitations resulting from arthritis.

Many factors exert an influence on osteoarthritis. While it is known that genetic mutations are closely linked 

to certain types of osteoarthritis, neither their importance in common osteoarthritis nor the mutations’ effects on

cartilage matrix molecules and their ability to survive is known. Meniscal injury is a risk factor for osteoarthritis,

yet the mechanisms are not understood. Whether the injury and its resulting instability are independent contributors to osteoarthritis remains to be determined.

Recommendation. Research is needed to better understand why arthritis is more common in women, what 

triggers it, the role that risk factors play in the progression of the conditions, and the different gender patterns 

in some diseases, such as anklyosing spondylitis.

Very early diagnosis of arthritis is important as evidence indicates, particularly for the knee, this can affect

patients’ ultimate activity levels and quality of life. For example, early diagnosis and weight reduction of 5.1 kg 

over 10 years in overweight patients reduced the risk of developing symptomatic disabling knee osteoarthritis 

by 50 percent. In addition, diagnostic patterns for women and men differ, with evidence for misdiagnosis and

underdiagnosis in women.

As the disease progresses, pain associated with activity, variable degrees of inflammation, and activity 

limitations emerge, among other symptoms. There is also some evidence supporting gender differences; activity 

limitations are higher for women than for men.

Recommendations: Better understanding of why there are gender differences in the natural history of the 

disease are needed. Research should explore the biological and mechanical factors that influence the progression 

of osteoarthritis. Such investigations should encompass the cellular, tissue, and organ level, include all joint 

components, and use the latest technological advances in assessment.

With such a large number of patients demonstrating arthritic conditions, treatment emerges as an extremely

important concern. We need to understand how to effectively treat arthritis early, not only to relieve symptoms, 

but also to slow progression of the disease. Since there is no cure, treatment of arthritis is aimed at controlling 

pain and maintaining function. Treatment programs include different approaches and may be used in combination. Drug therapy is used to reduce pain and swelling and there are promising drugs that modify joint tissues.

New tissue engineering techniques may also be promising in the repair of articular cartilage. There is also some 

evidence that exercise that avoids impact and tortional loading, using appropriate impact absorbent footwear, 

can improve function.

The biological mechanisms of cartilage repair are not fully understood and how to stimulate repair needs 

further investigation. Akin to the biological mechanisms, the effects of mechanical abnormalities also need to 

be tested for their effectiveness in repairing osteoarthritic joints.
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Surgical treatment for osteoarthritis encompasses a range of surgical procedures that may modify the joint

(osteotomies), replace it, or stimulate repair. Joint replacements have become increasingly prevalent in the last 

20 years. By 1994, nearly 490,000 were performed annually. However, the surgical procedures of choice 

remain unknown.

In addition, treatments for women and men may differ as may the outcomes of those treatments. Women 

treated surgically, benefited equally or better from the procedure than men, even though they had poorer functional status prior to surgery and had their surgery later. Why is this so? Do the answers lie, perhaps, in patient 

preferences, access to care, or physician practice patterns?

Recommendations: Research should address the possible early biological repair process in osteoarthritis 

with attention to the role of growth factors, among others, that would prevent late changes that lead to joint

replacement. Researchers need to conduct prospective clinical trials for various surgical procedures designed 

to stimulate repair of osteoarthritic joints. Outcomes studies of various surgical treatments are also needed.

Osteoporosis (Metabolic Bone Disease)

Affecting primarily older persons, osteoporosis is a disease manifested by diminished bone mineral mass 

and highly associated with an increased susceptibility to fracture. As is the case with osteoarthritis, because 

of its prevalence in the older population, the aging of the population, and the greater longevity of women, 

osteoporosis has and will continue to have a substantial impact on the practice of orthopaedics.

Osteoporosis affects 25 million Americans; 80 percent of those affected are women. Fully 50 percent 

of women will suffer from osteoporosis in their lifetimes. Because of the diminished bone mineral mass and

increased susceptibility to fracture, osteoporosis is implicated in 1.5 million fractures each year in the United 

States. One in two women and one in five men are at risk of developing osteoporotic fractures, with postmenopausal women being particularly vulnerable due to declining estrogen levels.

Based on medical bills and lost income, expenses related to osteoporosis and related fractures approach 

$10 billion annually. Due to our aging population, it is estimated that these costs will rise to $50 to $80 billion 

over the next 30 years. The costs associated with osteoporosis encompass not only health care expenses, but 

also costs in disability and mortality. Seventy percent of those suffering from osteoporosis do not return to 

previous pre-injury status, and many older patients, upon discharge from the hospital, are placed in long-term 

care facilities, from which many will never leave. Treatments for osteoporotic fractures are also extremely 

expensive, with the average cost of hip-fracture repair at $35,000 per person.

The overriding issue for exploration in osteoporosis is prevention. Prevention is the key to reducing the 

high prevalence of osteoporosis. Studies have indicated that a high peak bone mass reduces the risk of osteoporotic fractures later in life. Peak rate of bone growth and mineral accretion occur in girls between the ages 

of 11 and 14, and peak bone mass is achieved by age 30. Thus, we must begin osteoporosis prevention in 

childhood and continue to educate young adults, by stressing the importance of building peak bone mass 

with a calcium-rich diet.

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Recommendations: Since recent retrospective studies indicate a positive correlation between milk consumption during adolescence and young adulthood and bone density in middle-aged and older women, lifelong prospective studies need to be conducted to determine the effects of childhood calcium intake on peak bone mass.

Research is needed to understand how best to educate the public about prevention of osteoporosis and osteoporotic

fractures (diet, exercise, etc.). We need to attain a better understanding of how to target young women, many of

whom are misinformed about their likelihood of developing osteoporosis. Increased awareness of and education

about an especially severe problem in young female athletes — the triad of osteoporosis, eating disorders, and

amenorrhea — is also needed.

Although prevention is the key to reducing the incidence of osteoporosis in the future, women over 30 are

faced with the reality that the critical age for building their bone bank has passed. While we can now diagnose

osteoporosis accurately, we still have no cure. Research to date has indicated that some drug therapies can partially reverse osteoporosis and that treatments such as estrogen replacement therapy may be a reliable means of 

preventing osteoporosis in perimenopausal women. We can only slow, not halt, progressive loss of bone mass 

in affected individuals.

Recommendations: Additional research is needed to develop a better understanding of the effects of drugs 

that stabilize bone mass by limiting bone resorption or enhancing bone formation. Attempts to identify and 

analyze the incidence and reasons for falls leading to osteoporotic fractures need to be encouraged.

Different forms of osteoporosis have been identified, but little is known about their progression. Many risk 

factors have been identified in the occurrence of osteoporosis. Although some of these factors cannot be manipulated, such as aging and heredity, the majority of risk factors can be addressed (lack of weight-bearing exercise,

excessive thyroid or cortisone hormone, smoking, excessive alcohol consumption, reduced estrogen levels, and 

low calcium intake).

Recommendations: Research is needed to better understand the different forms of osteoporosis, their 

courses of progression, and the impact of types of treatment programs on outcomes. Additionally, research 

is needed to address the questions of why osteoporosis is more common in the female Caucasian and Asian 

populations, what triggers it, and the role that risk factors play in its progression.

Very early diagnosis of osteoporosis is crucial in slowing the progression of the disease and recent technological developments have improved our abilities to diagnose osteoporosis accurately. Dual energy x-ray 

absorptiometry and CT scan densitometry permit early detection of osteoporosis before fractures occur and 

also provide a sensitive means of monitoring the effectiveness of various treatments. 

Recommendation: Improved densitometry techniques to develop indications for earlier intervention 

would drastically improve patient quality of life.

As osteoporosis progresses, there is increased susceptibility to fractures resulting from relatively minor 

trauma. Common fracture sites include the spine, hip, wrist, ribs, and shoulder. With increasing numbers 
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of osteoporotic fractures, treatment has become a major concern. Low-intensity ultrasound has been determined 

to speed healing of tibia fractures. Because this treatment seems to be more effective in older people and has been

shown to reduce the need for secondary surgical treatments, it is particularly attractive.

Recommendations: The absolute and relative rates of bone formation and bone resorption may vary across 

individuals. Research needs to determine which treatment options are best for patients presenting with various 

combinations of these factors. Improved methods of bone fixation need to be developed. Use of mechanical 

and electromagnetic forces in stimulating increased bone mass needs to be explored. Research also needs to

improve our understanding of drug effects that stabilize bone mass, by either improving bone formation or 

limiting bone resorption. 

Sports Injuries (ACL Injury)

Throughout the past two decades, women’s participation in sports has increased dramatically. With increased 

participation comes increased injury. Given that millions of Americans participate in organized sports, it is not 

surprising that 20 percent of all musculoskeletal injuries occur during sports activities. Annually, 33 million 

Americans suffer from trauma- and sports-related musculoskeletal injuries; 90 percent of them require 

medical attention. 

The impact of these conditions on the American health care system is staggering, especially considering 

most could be prevented. Annually, it is estimated that 16 million of these injuries result in reduced activity,

amounting to over 250 million reduced activity days per year, with an average of 7.6 disability days per injury.

Annually 7.3 million musculoskeletal injuries result in a total of 71 million days of bed rest, and 77.6 million 

work days and 7.3 million school days lost. The grand total in terms of annual cost comes to more than 

$26 billion.

In the past 20 years, we have developed new technologies to assist in the treatment of musculoskeletal 

injuries, thereby reducing the length of time people are disabled by injuries and improving their overall 

outcomes. New devices, namely plates and rods, have been developed from new and improved metals with 

enhanced designs allowing for more accurate positioning and repositioning, while simultaneously permitting 

early ambulation and rehabilitation. Additionally, with the development of external fixators, patients have 

experienced an early return to function. Surgeons are now able to reattach completely severed limbs due 

to advancements in vascular microsurgery. Additionally, improvements in spine fracture stabilization have 

resulted in greater spine stability, with increased range of motion. Arthroscopic surgery has led to the ability 

to replace destroyed ligaments.

Recommendations: Continued research on devices and surgical technique improvements will enhance 

patient care and facilitate an earlier return to function. Future research needs to focus on attaining a better 

understanding of molecular signals that control repair and growth function in cells of the musculoskeletal system.

Development of synthetic replacements for muscle, soft tissue, and bone damaged beyond repair, and enhanced

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ability to manipulate the body’s immune system to increase successful transplantation of donated bone and 

ligaments are additional areas for future research.

The information presented thus far, relating to sports injuries, has focused on research that will improve 

treatments of injuries that affect both men and women equally. Generally, injury patterns between men and 

women are similar. With years of data, researchers have determined that injury patterns are generally sport 

specific, not gender specific. There are notable exceptions, however. Knee injuries and anterior cruciate ligament 

(ACL) injuries, spondylolisthesis, stress fractures in the pelvis and hip, pelvic floor dysfunction, patellofemoral 

problems, and bunions are injuries affecting women in greater numbers than men. 

Recommendation: Research on relative influences of osseous anatomy, ligamentous laxity, and the effect 

of sex hormones on the aforementioned conditions needs to be conducted to help develop an understanding 

of why injury patterns differ between men and women.

Studies and data relating specifically to ACL injuries highlight them as problematic sports injuries for women,

with, as yet, no conclusive evidence to explain the gender difference in prevalence. A 5-year analysis of soccer and

basketball injuries in the NCAA demonstrated that female basketball players experienced four times as many ACL

injuries as their male counterparts, and twice as many ACL injuries were experienced among female soccer players

when compared to their male counterparts. Among skiers, the female knee injury rate was twice that for male

skiers. In a review of medical records at the British Columbia Sports Medicine Clinic, 76 female and 151 male 

basketball injuries were identified. Seventy-two percent of female injuries involved the knee, of which 35 percent

were ACL tears. Men sustained less than 3 percent of their injuries to the ACL.

One study explored the impact of estrogen levels on the cellular metabolism of the ACL as a possible explanation for the gender differences. According to this study, levels of estradiol had a significant dose-dependent 

effect on the fibroblasts of the ACL. It was determined that resulting structural and compositional changes may

result in decreased strength of the ACL and increased female athlete ligament injury. The authors stressed the 

need for additional research into the causes of women’s sports injuries to better address their underlying etiology.

Although there is a higher relative incidence of ACL injuries among female athletes, the majority of populations studied after ACL reconstruction are male dominated. Herein lies a fundamental problem in women’s health

research: exclusion of female subjects in research studies. No scientific basis exists for such exclusion. 

Recommendations: Further research needs to explain the gender differences in the prevalence of ACL injuries.

Researchers need to explore the basis for gender differences in treatment: what is effective, why outcomes in men

and women differ when receiving the same treatment, and what mechanisms are underlying these differences. 

Findings will aid in the development of more effective treatment modalities.

Frozen Shoulder Syndrome

Although less prevalent than arthritis, osteoporosis, and sport injuries, frozen shoulder syndrome is one 

of the most common, yet least understood, disorders of shoulder motion. Frozen shoulder is a condition 
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characterized by significant restriction of both active and passive shoulder motion that occurs in the absence of a

known intrinsic shoulder disorder. Although frozen shoulder syndrome affects only 2 percent of the population,

women are 70 percent more likely to develop the syndrome than their male counterparts. It predominantly affects

women between the ages of 40 and 60. Frozen shoulder syndrome is characterized by a slow, progressive loss of

glenohumeral motion due to steadily increasing, diffuse shoulder pain. Eventually patients experience stiffening 

due to lack of motion, followed by gradual improvement. As motion increases, there is a gradual restoration of

function. The duration of the condition ranges from 18 to 24 months during which the patient experiences 

some degree of disability. The causes of this debilitating syndrome remain unknown. 

Recommendations: Research needs to determine why gender differences exist in the prevalence of frozen

shoulder syndrome. Is it menopause related or hormonally related? What is the vasculitic etiology? Further basic 

science studies on glenohumeral ligaments of the female shoulder will aid rehabilitative treatments.

Highlighting only four musculoskeletal disorders drives home the message: women’s health issues are long 

on numbers, large in disability and suffering, and enormous in cost. To reduce suffering and disability we need 

to prevent these disorders when we can, diagnose them early to minimize their impact, and provide interventions to maximize functioning in patients who have them. We want our daughters and their daughters to travel 

a different road than we have. How do we get from here to there? Through research. With research agencies 

like ORWH, we can craft a research agenda that will pave the way. With collective input, expertise, and due 

diligence, we can create that new highway — the future is ours; carpe diem.

References

Osteoarthritis

Brand, R. “Hip osteotomies: A biomechanical consideration,” JAAOS 5(5) (1997): 282–87.

Buckwalter, J. Arthritis among women. AAOS Instructional Course 210, 1997.

Kasser, JR (ed.). Orthopaedic Knowledge Update 5. American Academy of Orthopaedic Surgeons, 1996.

Kuettner, K and Goldberg, V (eds.). Osteoarthritic Disorders. American Academy of Orthopaedic Surgeons, 1995.

Praemer, A, Furner, S, and Rice, D. Musculoskeletal Conditions in the United States. American Academy of Orthopaedic 

Surgeons, 1992.

Osteoporosis

Anderson, JJ and Metz, JA. “Contributions of dietary calcium and physical activity to primary prevention of osteoporosis 

in females,” J Am Coll Nutr 12(4) (1993): 378–83.

Johnston, CC, Miller, JZ, Slemanda, CW, et al. “Calcium supplementation and increases in bone mineral density in children,” 

N Engl J Med 327 (1992): 82–7.

Kasser, JR (ed.). Orthopaedic Knowledge Update 5. American Academy of Orthopaedic Surgeons, 1996.

Kerstetter, JE. “Do dairy products improve bone density in adolescent girls?” Nutr Rev 53(11) (1995): 328–32.

Lloyd, T, Rollings, N, Andon, MB, et al. “Determinants of bone density in young women: Relationships among pubertal 

development, total body bone mass, and total body bone density in premenarchal females,” J Clin Endocrinol Metab 75(2)

(1992): 383–7.

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Praemer, A, Furner, S, and Rice, D. Musculoskeletal Conditions in the United States. American Academy of Orthopaedic 

Surgeons, 1992.

Sports Injuries

Arendt, E and Dick, R. “Knee injury patterns among men and women in collegiate basketball and soccer. NCAA data and 

review of literature,” Am J Sports Med 23(6) (1995): 694–701. 

Barber-Westin, S, Noyes, F, and Andrews, M. “A rigorous comparison between the sexes of results and complications after 

anterior cruciate ligament reconstruction,” Am J Sports Med 25(4) (1997): 514–26.

Gray, J, Taunton, J, McKenzie, D, Clement, D, McConkey, J, and Davidson, R. “A survey of injuries to the anterior cruciate 

ligament of the knee in female basketball players,” Int J Sports Med 6 (1985): 314–16.

Liu, S, Al-Shaikh, R, Panossian, V, Finerman, G, and Lane, J. “Estrogen affects the cellular metabolism of the ACL: A potential

explanation for female athletic injury,” Am J Sports Med 5(5) (1997): 704–709.

Praemer, A, Furner, S, and Rice, D. Musculoskeletal Conditions in the United States. American Academy of Orthopaedic 

Surgeons, 1992.

Shealy, J and Ettlinger, C. Gender-related injury patters in skiing. Skiing Trauma and Safety: Tenth Volume, ASTM STP 1266, 

C. Mote, Jr, R. Johnson, W. Hauser, and P. Schaffer (eds.). American Society for Testing and Materials, pp. 45–57, 1996.

Teitz, C, Hu, S, and Arendt, E. “The female athlete: Evaluation and treatment of sports-related problems,” JAAOS 5(2) 

(1997): 87–96.

Frozen Shoulder Syndrome

Baslund, B, Thomsen, BS, and Jensen, EM. “Frozen shoulder: Current concepts,” Scand J Rhem 19 (1990): 321.

Lundberg, BJ. “The frozen shoulder: Clinical and radiographic observations,” Acta Orthop Scand [Suppl] (1969): 119:1.

Matsen, F, Fu, F, and Hawkins, R (eds.). The Shoulder: A Balance of Mobility and Stability. American Academy of Orthopaedic 

Surgeons, 1992.

Charlene Waldman The Paget Foundation

The Paget Foundation for Paget’s disease of bone and related disorders is a voluntary health agency which 

provides information and programs for consumers and medical professionals for a number of bone disorders

involving abnormal bone resorption. One of the disorders addressed by the foundation is primary hyperparathyroidism, a hormonal problem which occurs when one or more of the parathyroid glands produce too much

parathyroid hormone. When this happens, the blood calcium becomes elevated. Bones may lose calcium, and 

too much calcium may be excreted by the kidneys.

In the U.S. population, 28 out of every 100,000 people can be expected to develop hyperparathyroidism 

each year. Women outnumber men by three to one, and the frequency of the condition increases with age. 
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Among women over age 60, new cases can be as high as two out of every 1,000 women or 2,000 out of 

every 1,000,000 annually.

A major complication of primary hyperparathyroidism is the weakening of bones due to loss of calcium, 

sometimes causing osteoporosis. Other complications include depression and kidney stones.

At present, the only known cure for this condition is surgical removal of the affected gland(s). Estrogen 

therapy may reduce some of the effects of the disease in women who have gone through menopause, but this 

treatment will not directly control the glandular overactivity. There are also some experimental drugs to control 

the elevated calcium, but these are not approved for routine use.

Clinical studies are needed to acquire information about the natural history of the disease, the incidence 

of fracture, and other complications including the neuropsychiatric manifestations. Also, greater insight into the 

relationship between the hyperparathyroid process and postmenopausal bone loss is essential. Information is also

needed on the course of patients who undergo parathyroid surgery as well as those who are followed conservatively. Additional studies will help to more clearly refine currently accepted guidelines for surgery versus medical

management for primary hyperparathyroidism. Also, research is needed to study possible medical therapies.

References

“Questions and Answers about Primary Hyperparathyroidism,” The Paget Foundation, 1997.

The Parathyroids: Basic and Clinical Concepts, Chapter 26, John P. Bilezikian, Robert Marcus, and Micheal A. Levine (eds.). 

Raven Press, 1994.

Joanne A.P. Wilson, M.D., F.A.C.P. American Gastroenterbiological Association

I am Dr. Joanne Wilson, professor of medicine and associate chief of gastroenterology at Duke University 

Medical Center. I am pleased to be with you today to present testimony on behalf of the American Gastroenterological Association (AGA), a professional medical society representing over 8,900 clinicians, researchers, and 

educators specializing in digestive diseases. I greatly appreciate the opportunity to present the views of AGA 

on two issues of critical importance to the health of women throughout the world and to the advancement of 

medical research: first, research objectives related to digestive diseases in women; and second, the continuing 

need to strengthen efforts to recruit and retain women in biomedical research careers. 

Research Objectives in Digestive Diseases

Gender-based differences have been established for a number of digestive diseases striking Americans. 

For many of these illnesses, major research questions remain and merit further study so we can improve current

approaches to prevention and treatment strategies. I will focus my testimony on particular gastroenterological 

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conditions for which gender differences should be explored further and a brief description of digestive diseaserelated research that should definitely be included in your agenda for women’s health research for the 21st 

century; they should be strongly supported with NIH funding:

Colorectal cancer. Colorectal cancer is the second deadliest cancer in the United States and the third leading cause of cancer-related deaths in women, after lung and breast cancer. About 134,000 new cases of colorectal 

cancer will be diagnosed and about 55,000 people in the United States will die from this disease this year. For 

a 65-year-old woman, the risk of death from colorectal cancer is approximately equal to the risk of death from 

breast cancer. Yet, the research dollars devoted to colorectal cancer pales in comparison to those allocated to 

breast cancer research. Although the lifetime risk of colorectal cancer for women is 6 percent, there is a dramatic underappreciation among the public of the risk of colorectal cancer in women.

The last decade has witnessed major advances in prevention strategies for colorectal cancer. Prospective 

randomized controlled trials have shown that aggressive detection strategies result in a 30 percent decrease in 

colorectal cancer mortality. Case control studies have demonstrated that sigmoidoscopy to detect premalignant

polyps reduces the risk of rectal cancer by as much as 80 percent. 

Earlier this year, AGA joined with a consortium of GI societies in developing national practice guidelines 

on screening and surveillance for colorectal cancer. This interdisciplinary panel concluded that screening regimens, beginning at age 50 for persons at average risk of developing colorectal cancer and at age 40 for persons at

increased risk of developing colorectal cancer due to personal or family medical history, are effective in identifying and preventing colorectal cancers. The American Cancer Society (ACS) also released similar screening guidelines this year. Both of these guidelines concluded that routine screening and surveillance of men and women 

are vital to saving lives, and are cost effective for the health care system.

Other potential preventative strategies have been identified for women through epidemiological research.

Aspirin use has been shown to decrease the risk of colorectal cancer, through as yet unidentified mechanisms.

Estrogen replacement therapy may be associated with up to a 50 percent decrease in colorectal cancer. The 

pathophysiological mechanisms of this have not been identified, and may shed important light on the effect 

that gender plays in colorectal cancer. 

This year, Congress passed important legislation providing Medicare coverage of colorectal cancer screening.

This action is a giant step toward providing greater access to screening for older women. Our next tasks should be 

to educate the public, physicians, and health plans on the importance of routine screening, and, equally important, 

to fund research on detection, clinical investigations, epidemiological studies, and studies on the effect of interventions (e.g., dietary; studies on the influence of reproductive hormones on the effectiveness of interventions), and

progress of colorectal cancer in women.

Gallstones. In terms of health care costs, gallstone disease is the number one gastroenterological disease 

in the United States. About 10 percent of Americans have gallstone disease, and women are twice as likely to 
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get gallstones as are men. This can be attributed in large part to the role of estrogens and progesterones during 

and following pregnancy and throughout women’s lives. Despite this prevalence in women, the most extensive

long-term study of the natural history of gallstones includes only men. The natural history of gallstones developing at the high-risk periods during and after pregnancy is not well described and is an area that demands 

additional research.

Approximately 500,000 cholecystectomies are performed in the United States each year, and for women, this 

is one of the most common surgical procedures. Research is necessary to identify: which symptoms are most likely 

to improve after cholecystectomy; methods for diagnosing whether abdominal pain is of biliary origin; and the 

outcomes, in terms of mortality and health care costs, of using advanced treatments for gallstone disease.

Functional bowel disorders. Irritable bowel syndrome and functional bowel disorders, which affect as much 

as 15 percent of the U.S. population, are twice as common in women as men. Affected individuals have chronic

abdominal pain, changes in bowel habits, gas, and bloating. These disorders result in major health care costs and

decreased productivity. Research on gastrointestinal motility has enhanced our understanding of the pathophysiology of these disorders. For example, functional bowel disorders can be associated with a history of physical 

and sexual abuse, with abused women experiencing a fourfold increased risk of pelvic pain. Additional research 

is needed with respect to:

• the effect of the menstrual cycle on functional bowel disorders;

• the relative impact of genetics, the environment, social factors on etiology;

• perpetuation of symptoms; and 

• studies on various disease interventions, such as how seratonin receptor antagonists, antianxiolytics, 

and antimotility agents may improve the treatment of these disorders.

Helicobacter Pylori and the upper GI tract. The Helicobacter pylori bacterium is a relatively new discovery

but it has already revolutionized and advanced treatment for a high-incidence, high-expense disease: peptic ulcer

disease. An NIH consensus development conference concluded that the H. pylori bacterium causes peptic ulcers

and that treatment with a combination therapy of acid-blocking drugs and antibiotics can eradicate ulcer disease in

most patients. Further, there is considerable evidence that H. pylori infection plays a role in gastric cancer. Studies

have shown that H. pylori-infected women are 15 to 18 times more likely to develop gastric cancer than infected

men. Further research is needed regarding:

• the role of acid secretion (usually higher in men than women) in protecting against the development 

of gastric cancer; and 

• clinical approaches to preventing gastric cancer in men, women, and children.

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NSAIDs and peptic ulcer disease. The other known cause of peptic ulcer disease is ingestion of high 

dosages of non-steroidal, anti-inflammatory drugs (NSAIDs) such as aspirin and ibuprofen. Both men and women 

can experience NSAID side effects, but women consume more of these medications than men because of a higher 

incidence of degenerative arthritis and pelvic pain. Older women are particularly heavy users of NSAIDs and, 

therefore, at increased risk of GI ulcerations and GI bleeding. Further research is needed on the prevention of

NSAIDs-induced peptic ulcer disease in men and women.

Primary biliary cirrhosis. There are a number of significant differences between men and women in terms 

of incidence and pathophysiology of liver disease. This is particularly striking with regard to primary biliary 

cirrhosis, which is nine times more common in women than men. For the thousands of women suffering from 

this disorder, current treatment is only marginally effective, and liver transplantation is likely. NIH is currently 

sponsoring a clinical trial of improved treatment, but it is clear that additional basic and clinical research is 

needed on the pathogenesis, immunology, and therapeutic approach to primary biliary cirrhosis.

Other liver diseases. Additional aspects of liver disease in women merit expanded study. Studies have 

shown that women develop cirrhosis with less alcohol ingestion than men. The risk for women developing 

end-stage liver disease occurs at half of the amount of alcohol intake that men require. Further, as the liver is 

an estrogen-responsive organ in both women and men, sex hormones clearly play a role in diseases of the liver.

Finally, there is emerging evidence that livers from female donors for transplantation do not function as well in 

recipients as livers from male donors. With respect to liver disease, additional research is needed regarding:

• the impact of sex hormones on elements of the immune system and on the proliferation of liver cells;

• the factors responsible for differences between men and women in alcohol absorption and metabolism;

• the effects of estrogen and progesterone on the development of alcoholic liver disease;

• alcohol abuse in young women — perhaps as young as high school age — and the early development 

of liver disease; and 

• liver function in transplant patients who receive livers from female donors.

Obesity and eating disorders. Obesity is extremely common, with about 25 percent of the adult population

affected. Obesity is associated with an increase in mortality from all causes, largely mediated by its negative effects 

on the cardiovascular system including hypertension and diabetes. Because cycling weight up and down itself 

is associated with increased risk, such as developing gallstones, interventions that induce weight loss must be 

carefully examined to assess outcomes. The recent case of serious complications from combinations of seratonin 

agonists to depress the appetite highlights the need for rigorous evaluation in this often emotion-laden field. 

Many research questions regarding GI disease in women merit further study. These areas I have chosen 

to highlight today are disorders of particularly high incidence in women, entail substantial health care expenditures, and result in high levels of morbidity and mortality.
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Enhancing Biomedical Research Career Opportunities for Women

I would like to offer several recommendations for enhancing biomedical research career opportunities 

for women:

• First, NIH should expand small grant support for mentoring programs for women interested 

in beginning or retraining for research centers.

• Further, NIH should provide seed money for the initiation of special academic tracks for women 

interested in research careers. These should begin as early as medical school and certainly include 

residency training.

• Academic institutions should be encouraged to adopt “stop the clock” policies with regard to tenure 

and promotion of women faculty. This would extend the period of time that women would have to 

achieve tenure so that the professional “down-time” during leaves of absence would not be included. 

As your office has recommended, special research and training awards should be developed by academic institutions to help women re-enter biomedical careers after taking time off to raise their families.

• After years of productive research activity, investigators often move on to senior administrative positions 

as departmental chairs or deans through which they continue to foster research and influence the research

activities of their institutions. Unfortunately, women do not succeed to these positions as early or as often 

as men. NIH should allow institutions to include in their indirect cost calculations expenses associated 

with programs to prepare women faculty members for these senior positions.

The American Gastroenterological Association greatly appreciates this opportunity to present testimony 

regarding GI research objectives of particular relevance to women’s health and to offer recommendations for

enhancing biomedical research career opportunities for women. I commend Dr. Vivian Pinn and the Office 

of Research on Women’s Health for their outstanding leadership on these issues of critical importance to the 

health and lives of women of all ages.

Ruth E. York, Ph.D., R.N., F.A.A.N. Association of Women’s Health, Obstetric and Neonatal Nurses

Thank you for the opportunity to present testimony at this most important hearing. The Association of

Women’s Health, Obstetric and Neonatal Nurses (AWHONN), an organization of 22,000 nurses and others 

committed to excellence in nursing practice for the health and health care of women and newborns, has a longstanding commitment to women’s health research and the use of that research in practice. This commitment is

manifested in many diverse ways, including support for a Practice and Research Department, standards development and dissemination, evidence-based practice resources, a small research grants program, and widely distributed scientific and technical journals. In addition, the organization has committed resources to a research-based

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practice program in which a science-based protocol is developed and systematically evaluated by clinicians in 

multiple sites throughout the country and Canada. The most recent project, Continence for Women, is currently 

in the implementation stage at 37 diverse sites providing screening, evaluation, and treatment for women of all 

ages and ethnicities.

As an organization, we support and conduct research endeavors that strengthen the scientific basis of nursing

practice. We believe that research which seeks to improve the health of women across their life span, such as prevention of adolescent pregnancy, improved reproductive health, and enhancement of postmenopausal well being, 

is necessary and vitally important.

Today, many women are single heads of households living below the federal poverty level, caring for children

and elderly family members. With the loss of public assistance, women will need to hold one or more jobs outside

the home and face the burden of insufficient child care resources. Current research in women’s health does not 

provide information about how the health of women in today’s society can be optimized. In addition, inadequate

access to primary preventive services, underrepresentation of women in clinical research trials, underutilization 

of research findings to support clinical practice, and lack of information on the economic ramifications of women’s

health outcomes research are critical issues for all research conducted in women’s health. Within the context of

these issues, research on adolescent pregnancy, violence against women, substance abuse, breast cancer, menopause, and cardiovascular disease are but some of the health problems that remain vital concerns to women, 

their families, and society.

Prevention of adolescent pregnancy is another crucial area in need of continued research. As has been true 

in earlier years, it can be expected that 1,000,000 adolescents will become pregnant annually. To date, research 

has had little impact on providing the solutions to reducing the incidence of adolescent pregnancy. Clearly, 

unique and innovative research approaches are needed to address the issues of adolescent pregnancy and its 

multiple, negative-associated sequela.

Societal issues such as violence against women and substance abuse are areas that need to be explored to 

determine effective support and treatment for affected women. In the area of violence against women, delineating 

the factors which impede or facilitate women to resolve the abuse situation is critical and may vary for women 

of different ages, races, and ethnic groups. In the area of substance abuse, it is well documented that women 

have been managed similarly to men. However, research has shown that the effect of substance abuse is gender

dependent. Therefore, comprehensive investigations are needed to develop and test appropriate, cost-effective 

management strategies for substance-abusing women and their families.

Among women who have cancer, breast cancer is a leading cause of death between the ages of 35 to 54. 

For all women, methods of early detection and prevention are critical. For the women diagnosed with breast 

cancer, research on treatment, sociocultural, and behavioral concerns is essential for them and their significant 

others. With the advent of genetic testing, new and important areas for research will greatly expand. 
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Menopause is a normal event in the lives of women, typically occurring at about 50 years of age. With 

a life expectancy of 82, women live one-third of their adult lives after menopause. Insufficient research has 

been conducted on clinical management of women’s postmenopausal health concerns, such as use of hormone

replacement therapy and other potential health-altering intervention modalities. 

Cardiovascular diseases are the leading cause of death in women ages 55 and older. Yet, until recently, 

women have been underrepresented in studies of coronary heart disease. To date, it has generally been assumed 

that management of cardiovascular diseases is the same for men as it is for women. However, new evidence 

strongly suggests that interventions which are gender specific must be developed and tested.

In view of these facts, AWHONN supports:

• research that focuses on health promotion and maintenance, as well as,

• disease prevention, throughout women’s life span;

• adequate representation of women in future studies of health problems;

• research on health problems that primarily affect women; 

• research on diseases with social origins with emphasis on development of gender-specific interventions.

AWHONN is pleased to have this occasion to provide testimony to the Office of Research on Women’s 

Health and help identify priorities for research on women’s health for the 21st century. As a nurse representative 

of the 2.1 million predominantly female members of the nursing workforce, we applaud this important work. 

As a representative of more than 22,000 nurses whose practice is focused on women and newborns in the United

States and Canada, and representing the professional nursing association whose mission is excellence in the health 

and health care for women and newborns, AWHONN welcomes all opportunities to provide recommendations 

for a revised research agenda for women’s health.

References

1 Statement of the American Pharmaceutical Association. FDA public workshop on gender studies in product development: 

scientific issues and approaches. Nov. 6, 1995.

2 Gender-Related Health Issues: An International Perspective; MJ Berg, GN Francke, and MR Rollings, (eds.). APhA: 

Washington, D.C., 1996.

3 Navigating the Medication Marketplace: How Consumers Choose. American Pharmaceutical Association and Prevention

magazine. October 1997.

4 Ibid.

5 Bootman, JL, Harrison, DL, and Cox, E. “The health care cost of drug-related morbidity and mortality in nursing facilities,” 

Arch Intern Med 157 (1997): 2089–96.

6 Johnson, JA and Bootman, JL. “Drug-related morbidity and mortality: a cost-of-illness model,” Arch Intern Med 155:

1949–56.

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Workshop Agenda and Participant Roster

Putting It All Together: The Agenda for Research on Women’s Health for the 21st Century

Bethesda Marriott

Bethesda, Maryland

November 17-19, 1997

AGENDA

MONDAY, NOVEMBER 17, 1997

11:00 a.m.-7:00 p.m. Conference Registration

PUBLIC HEARING

1:00-6:00 p.m. Public Testimony: The Women’s Health Task Force Research Agenda for the 21st Century

TUESDAY, NOVEMBER 18, 1997

SCIENTIFIC WORKSHOP DAY 1

7:00 a.m.-6:30 p.m. Conference Registration

7:00-8:00 a.m. Continental Breakfast

8:00 a.m.-12:00 p.m. Opening Plenary Session

8:00-9:00 a.m. Welcome and Opening Remarks

Vivian W. Pinn, M.D.

Ruth L. Kirschstein, M.D.

Remarks 

The Honorable Barbara A. Mikulski, U.S. Senate

The Honorable Constance A. Morella, U.S. House of Representatives

9:00-9:30 a.m. Overview: Beyond Hunt Valley: Research on Women’s Health for the 21st Century

Vivian W. Pinn, M.D.

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9:45-10:00 a.m. Break

10:00-11:00 a.m. Scientific Plenary Session I

Genetics, Genomics, and Women’s Health

Francis Collins, M.D., Ph.D.

Director, NHGRI

Panel Discussion: Legal and Ethical Issues 

Karen Rothenberg, J.D.

John Fletcher, Ph.D.

Robert Murray, Ph.D.

11:00-11:45 a.m. Scientific Plenary Session II

Heart Disease Research in Women: A Look Back and a View to the Future

Claude Lenfant, M.D., Director, NHLBI

Remarks: Research on Women: An Investigator’s View

Julie Buring, Sc.D.

Charge to the Working Groups

Donna Dean, Ph.D.

Marianne Legato, M.D.

12:00-1:15 p.m. Lunch

Speaker: The Cancer Program at the End of the 20th Century

Richard Klausner, M.D., Director, NCI

1:30-4:15 p.m. Breakout to Working Groups

Alcohol and Other Drug Use Disorders and Consequences 

Bone and Musculoskeletal Disorders

Cancer

Cardiovascular and Pulmonary Disease

Career Issues for Women Scientists

Digestive Diseases

Immunity and Autoimmune Diseases

Mental Disorders

Neuroscience

Oral Health

Pharmacology

Reproductive Issues

Urologic and Kidney Conditions

4:30-6:00 p.m. Scientific Plenary Session III

Panel Discussion: Women’s Health Research 

Women and Research: Quo Vadis? 

Antonia C. Novello, M.D., M.P.H.
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Beyond Hunt Valley: Perspectives 

Maureen Henderson, M.D., M.P.H.

Implications for Education and Public Policy

Barbara Ross-Lee, D.O.

Remarks 

Audrey T. Haynes, Deputy Assistant to the President

White House Office for Women’s Initiatives and Outreach

6:00-7:30 p.m. Networking Reception

The Honorable Louise M. Slaughter, U.S. House of Representatives

WEDNESDAY, NOVEMBER 19, 1997

SCIENTIFIC WORKSHOP DAY 2

7:00-8:00 a.m. Continental Breakfast

8:00-9:00 a.m. Scientific Plenary Session IV

Speaker: Women in Biomedical Careers

Lydia Villa-Kamaroff, Ph.D.

Remarks: Women in Health — Towards a New Paradigm

Margaret Chesney, Ph.D.

9:00 a.m.-12:00 p.m. Concurrent Working Groups (continue)

12:00 p.m. Lunch

Remarks

The Honorable Louis Stokes, U.S. House of Representatives

Speaker: Putting It All Together

Byllye Avery, M.Ed.

1:15-3:00 p.m. Closing Plenary Session

Working Group Reports

Working Group Cochairs

Task Force Cochairs

Discussion

Closing Remarks/Adjournment

Task Force Cochairs

Vivian W. Pinn, M.D.

3:15 p.m. Press Briefing
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Katherine Alley, M.D.

Betty Ford Comprehensive Breast Center

George Washington University Hospital

Columbia Hospital for Women

Washington, District of Columbia

Amy Allina

Reproductive Health Technologies Project

Washington, District of Columbia

Gail D. Anderson, Ph.D.

Department of Pharmacy and Pharmaceutics

School of Pharmacy

University of Washington

Seattle, Washington

Margaret Anderson, M.A.

Society for the Advancement of Women’s 

Health Research

Washington, District of Columbia

Ruth A. Anderson, D.D.S.

College of Dentistry

Howard University

Washington, District of Columbia

Marietta Anthony, Ph.D.

Office of Women’s Health

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Karen Antman, M.D.

Division of Medical Oncology

Columbia University College of Physicians 

and Surgeons

New York, New York

Juanita A. Archer, M.D.

Endocrine/Metabolic Section

Department of Internal Medicine

Howard University Hospital

Washington, District of Columbia

BEYOND HUNT VALLEY: 

RESEARCH ON WOMEN’S HEALTH FOR THE 21st CENTURY

BETHESDA, MARYLAND

NOVEMBER 17-19, 1997

PARTICIPANTS

Joan Abell 

Information, Resources, and Inquiries Branch

Office of Scientific Information

National Institute of Mental Health

National Institutes of Health

Rockville, Maryland

Diane L. Adams, M.D., M.P.H.

Center for Information Technology

Agency for Health Care Policy and Research

Rockville, Maryland

Lucile Adams-Campbell, Ph.D.

Howard University Cancer Center

Washington, District of Columbia

Megan Adamson, M.D.

National Institute on Alcohol Abuse and Alcoholism

National Institutes of Health

Bethesda, Maryland

Dyanne D. Affonso, Ph.D., F.A.A.N.

Nell Hodgson Woodruff School of Nursing

Emory University

Atlanta, Georgia

Kathy S. Albain, M.D.

Division of Hematology/Oncology

Loyola University Medical Center

Maywood, Illinois

Michael Albo, M.D.

Division of Urology

University of California, San Diego

San Diego, California

Marjorie J. Albohm, M.S., A.T.C.

Research and Education Foundation

National Athletic Trainers Association

Mooresville, Indiana
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Lynn Armentrout

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Carol A. Aschenbrener, M.D.

Kaludis Consulting Group Washington, District of Columbia

Kathryn Atchison, D.D.S., M.P.H.

School of Dentistry

University of California

Los Angeles, California

Constance W. Atwell, Ph.D.

Division of Extramural Activities

National Institute of Neurological Disorders 

and Stroke

National Institutes of Health

Bethesda, Maryland

Phyllis August, M.D.

Division of Hypertension

New York Hospital

Cornell University

New York, New York

Faye C. Austin, Ph.D.

Division of Cancer Biology

National Cancer Institute

National Institutes of Health

Rockville, Maryland

Byllye Avery, M.Ed.

National Black Women’s Health Project

Swarthmore, Pennsylvania

James Baker, M.D.

Division of Allergy

University of Michigan

Ann Arbor, Michigan Winnie Barouch, Ph.D.

National Heart, Lung, and Blood Institute

National Institutes of Health

Bethesda, Maryland

Steve Barrett

USA Weekend

Arlington, Virginia

Barbara Bartman, M.D.

University of Maryland School of Medicine

Baltimore, Maryland

Anne R. Bavier, M.N., F.A.A.N.

Nell Hodgson Woodruff School of Nursing

Emory University

Atlanta, Georgia

Marcia Bayne-Smith, D.S.W., A.C.S.W.

Urban Studies Department

Queen’s College

City University of New York

Flushing, New York

Lula A. Beatty, Ph.D.

Special Populations Office

National Institute on Drug Abuse

National Institutes of Health

Rockville, Maryland

Jill B. Becker, Ph.D.

Department of Psychology

Biopsychology Area

University of Michigan

Ann Arbor, Michigan

Kevin G. Becker, Ph.D.

National Human Genome Research Institute

National Institutes of Health

Bethesda, Maryland

Julie Beitz, M.D.

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Praxedes V. Belandres, M.D.

Physical Medicine and Rehabilitation/ Telemedicine Evaluation

Army Operational Medicine Research Program

U.S. Army Medical Research and Materiel Command

Frederick, Maryland

Frank Bellino, Ph.D.

Biology and Aging Program

National Institute on Aging

National Institutes of Health

Bethesda, Maryland

Adrianne Bendich, Ph.D.

Roche Vitamins, Inc.

Parsippany, New Jersey

Alison W. Bennett

National Institute of Mental Health

National Institutes of Health

Rockville, Maryland
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Kate Berg, Ph.D.

Section on Ethics and Special Populations

National Human Genome Research Institute

National Institutes of Health

Bethesda, Maryland

Mary J. Berg, Pharm.D.

Division of Clinical and Administrative Pharmacy

College of Pharmacy

University of Iowa

Iowa City, Iowa

Karen Berkley, Ph.D.

Program in Neuroscience

Florida State University

Tallahassee, Florida

Michelle Berlin, M.D., M.P.H.

University of Pennsylvania

Philadelphia, Pennsylvania

Roberta Biegel, M.A.

Society for the Advancement of Women’s 

Health Research

Washington, District of Columbia

Marsha Judy Bievre, B.A.

National Institute of Child Health and 

Human Development

National Institutes of Health

Bethesda, Maryland

Roberta Binder, Ph.D.

Sexually Transmitted Disease Branch

National Institute of Allergy and Infectious Diseases

National Institutes of Health

Rockville, Maryland

Stephanie J. Bird, Ph.D.

Massachusetts Institute of Technology

Cambridge, Massachusetts

Shirley Blakely

Food and Drug Administration

Department of Health and Human Services

Washington, District of Columbia

Mary Blehar, Ph.D.

Schizophrenia, Mood, and Other Brain Disorders

Behavioral Research and AIDS

Division of Mental Disorders

National Institute of Mental Health

National Institutes of Health

Rockville, Maryland

Linda Burnes Bolton, Ph.D., R.N., F.A.A.N.

National Black Nursing Association

Los Angeles, California

Elizabeth Borda

Women and Epilepsy Initiative

Epilepsy Foundation

Landover, Maryland

Lisa Bowleg, Ph.D.

Center for Women Policy Studies

Washington, District of Columbia

Lori A. Boyajian, D.O.

College of Osteopathic Medicine

The University of Health Sciences

Kansas City, Missouri

Barbara Boyan, Ph.D.

Department of Orthopaedics

The University of Texas Health Sciences Center

San Antonio, Texas

Margaret Brackley, Ph.D., R.N.

School of Nursing-Family Nursing Care

University of Texas Health Science Center

San Antonio, Texas

Hannah Bradford

Society for Acupuncture Research

Bethesda, Maryland

Edward N. Brandt, Jr., M.D., Ph.D.

Center for Health Policy Research

University of Oklahoma Health Science Center

Oklahoma City, Oklahoma

Irene Brandt

Eli Lilly and Company

Washington, District of Columbia

Otis W. Brawley, M.D.

National Cancer Institute

National Institutes of Health

Bethesda, Maryland

Joel O. Brende, M.D.

Mercer University School of Medicine

Macon, Georgia

Maxine Brinkman

Director of Women’s Services

The National Association of Professionals 

in Women’s Health

Chicago, Illinois
195

VOLUME 3

Joyce Briscoe

American Academy of Orthopaedic Surgeons

Washington, District of Columbia

Evelyn Bromet, Ph.D.

Sjögren’s Syndrome Foundation, Inc.

Jericho, New York

Sandra Brooks, M.D.

Society of Gynecologic Oncologists

Washington, District of Columbia

David M. Brown, M.D.

School of Medicine

University of Minnesota

Minneapolis, Minnesota

Michael A. Brown, M.P.H.

Office of Women’s Health

Centers for Disease Control and Prevention

Atlanta, Georgia

Allyson Browne

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Ross C. Brownson, Ph.D.

St. Louis University School of Public Health

St. Louis, Missouri

George Bryan, M.D.

School of Medicine

University of Texas Medical Branch

Galveston, Texas

Patricia S. Bryant, Ph.D.

Behavior, Health Promotion, and Environment Program

Division of Extramural Research

National Institute of Dental Research

National Institutes of Health

Bethesda, Maryland

Ruth Ellyn Bulger, Ph.D.

Uniformed Services University of the Health Sciences

Bethesda, Maryland

Jonca Bull, M.D.

Office of Operations

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Richard C. Bump, M.D.

Department of Obstetrics/Gynecology

Duke University Medical Center

Durham, North Carolina

Linda Burhansstipanov, Dr.P.H., M.S.P.H.

AMC Native American Cancer Research Center

Denver, Colorado

Julie E. Buring, Sc.D.

Brigham and Women’s Hospital

Boston, Massachusetts

Constance Burr

National Institute of Mental Health

National Institutes of Health

Rockville, Maryland

Virginia S. Cain, Ph.D.

Office of Behavioral and Social Sciences Research

Office of the Director

National Institutes of Health

Bethesda, Maryland

Francisco Calvo, Ph.D.

Special Emphasis Panel Section, Review Branch

National Institute of Diabetes and Digestive 

and Kidney Diseases

National Institutes of Health

Bethesda, Maryland

Michael Camilleri, M.D.

Gastro Intestinal Unit

Mayo Clinic

Rochester, Minnesota

Jacquelyn C. Campbell, Ph.D., R.N., F.A.A.N.

School of Nursing

The Johns Hopkins University

Baltimore, Maryland

Gena Carter, M.D.

American Cancer Society

Jamaica Plain, Maine

Constance Cashen

St. Vincent Hospital

Toledo, Ohio

John Caughron, M.D.

Uniformed Services

University of Health Sciences

Washington, District of Columbia
196

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Kennerly Chapman

Office of Women’s Health

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Molly S. Chatterjee, M.D.

Maternal-Fetal Medicine

Meharry Medical College

Brentwood, Tennessee

Margaret A. Chesney, Ph.D.

University of California, San Francisco

San Francisco, California

Freda K. Cheung, Ph.D.

University of California, Los Angeles

Torrance, California

Geoffrey Cheung, Ph.D.

Office of Alternative Medicine

National Institutes of Health

Bethesda, Maryland

Mary Ellen Cheung, Ph.D.

Division of Stroke, Trauma, and 

Neurodegenerative Disorders

National Institute of Neurological Disorders 

and Stroke

National Institutes of Health

Bethesda, Maryland

Margaret M.L. Chu, Ph.D.

U.S. Environmental Protection Agency

Washington, District of Columbia

Mary Chung

National Asian Women’s Health Organization

San Francisco, California

Mary T. Chunko, M.A.

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Dorothy Cirelli

Patient Recruitment and Referral Center

Warren Grant Magnuson Clinical Center

National Institutes of Health

Bethesda, Maryland

Alice Clark, Ph.D.

Office of the Director

School of Pharmacy

National Center for the Development of 

Natural Products

The University of Mississippi

University, Mississippi

Pamela A. Clax, D.P.M.

Treatment Research Program

Division of Acquired Immunodeficiency Syndrome

National Institute of Allergy and Infectious Diseases

National Institutes of Health

Rockville, Maryland

Curt S. Clifton

Congressman Albert Wynn’s Office

Washington, District of Columbia

Kathleen Clouse, M.D.

Center for Biologics Evaluation and Research

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Nora Cody, M.A.

DES Action, USA

Oakland, California

Ervin Jean Coleman, M.S.

National Black Nurses Association

Tyler, Texas

Elaine Collier, M.D.

Autoimmunity Section

Division of Allergy, Immunology, and Transplantation

National Institute of Allergy and Infectious Diseases

National Institutes of Health

Bethesda, Maryland

Francis S. Collins, M.D., Ph.D.

National Human Genome Research Institute

National Institutes of Health

Bethesda, Maryland

Karen Scott Collins, M.D., M.P.H.

The Commonwealth Fund

New York, New York

J.C. Comolli, M.B.A., R.N.

Office on AIDS

National Institute on Drug Abuse

National Institutes of Health

Rockville, Maryland
197

VOLUME 3

Leah Conn, B.A.

Public Responsibility in Medicine and Research

Boston, Massachusetts

Alice H. Conti, M.B.A.

Wyeth-Ayerst Laboratories

Philadelphia, Pennsylvania

Bente E. Cooney, M.S.W.

National Osteoporosis Foundation

Washington, District of Columbia

Judith A. Cooper, Ph.D.

Division of Human Communication

National Institute on Deafness and Other 

Communication Disorders

National Institutes of Health

Bethesda, Maryland

Zara Cooper, B.S.

Mount Sinai School of Medicine

New York, New York

Susan Coren

Washington, District of Columbia

Kathleen Costigan, R.N., M.P.H.

Johns Hopkins Hospital

Baltimore, Maryland

Terrie Cowley, B.A.

The T.M.J. Association, Ltd.

Elm Grove, Wisconsin

Kathy Croft, M.A.

Association of American Medical Colleges

Washington, District of Columbia

C. Deborah Cross, M.D.

Committee on Women

Albany Medical School

American Psychiatric Association

Albany, New York

Nancy Boucat Cummings, M.D.

National Institute of Diabetes and Digestive 

and Kidney Diseases

National Institutes of Health

Bethesda, Maryland

Frances Cuomo, M.D.

Hospital for Joint Diseases

New York, New York

Gary Curhan, M.D., Sc.D.

Channing Laboratory

Brigham and Women’s Hospital

Boston, Massachusetts

Katy Curran, M.S., A.T.C.

Conde Nast Sports for Women

Atlanta, Georgia

Jaleh Daie, Ph.D.

University of Wisconsin at Madison

Madison, Wisconsin

Alice J. Dan, Ph.D.

Center for Research on Women and Gender

University of Illinois at Chicago

Chicago, Illinois

Jacqueline E. Darroch, Ph.D.

The Alan Guttmacher Institute

New York, New York

Robin Davis, M.D.

Breast Cancer Resource Committee

Baltimore, Maryland

Sahar Dawisha, M.D.

Center for Devices and Radiological Health

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Harriet de Wit, Ph.D.

Department of Psychiatry

University of Chicago

Chicago, Illinois

Donna Dean, Ph.D.

Division of Physiological Systems

Center for Scientific Review

National Institutes of Health

Bethesda, Maryland

Betty Diamond, M.D.

Immunology and Microbiology and Medicine

Albert Einstein College of Medicine

Yeshiva University

Bronx, New York

Leah J. Dickstein, M.D.

Department of Psychiatry

University of Louisville School of Medicine

Louisville, Kentucky
198

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Catherine Didion, A.B.

Association for Women in Science

Washington, District of Columbia

Anna Mae Diehl, M.D.

Johns Hopkins University School of Medicine

Baltimore, Maryland

Bobbie Dill, R.N., B.S.N.

Behavioral Medicine Solutions of Virginia

Roanoke, Virginia

James Dill, M.D.

Internal Medicine

Endoscopic Ultrasound of Virginia

Roanoke, Virginia

Mercer University

Macon, Georgia

Deborah I. Dingell

GM Foundation

Washington, District of Columbia

Karen M. Dodge

Substance Abuse and Mental Health 

Services Administration

Department of Health and Human Services

Rockville, Maryland

Alicia Doherty

R.O.W. Sciences, Inc.

Rockville, Maryland

Joanne Donovan, M.D., Ph.D.

Gastroenterology Section

Department of Medicine

West Roxbury Veterans Administration 

Medical Center

West Roxbury, Massachusetts

Mark Donowitz, M.D.

G-I Division

Johns Hopkins University School of Medicine

Baltimore, Maryland

Betty Dooley

Women’s Research and Education Institute

Washington, District of Columbia

Leilani Doty, Ph.D.

Department of Neurology

University of Florida College of Medicine

Gainesville, Florida

Yvette Drake, B.S.

Silver Spring, Maryland

Carolyn M. Dresler, M.D.

Fox Chase Cancer Center

American College of Chest Physicians

Philadelphia, Pennsylvania

Barbara Drinkwater, Ph.D.

Pacific Medical Center

Seattle, Washington

Therese M. Droste

Reuters Health

Washington, District of Columbia

Mary C. Dufour, M.D., M.P.H.

National Institute on Alcohol Abuse 

and Alcoholism

National Institutes of Health

Bethesda, Maryland

Carolyn P. Dukarm, M.D.

University of Rochester

Rochester, New York

Marilyn Duncan, M.D.

Pediatric Oncology Program

Department of Pediatrics

Health Sciences Center

School of Medicine

University of New Mexico

Albuquerque, New Mexico

Jane Durken, B.S.N., R.N.

Adventist Healthcare

Rockville, Maryland

Debra Egan, M.P.H.

National Heart, Lung, and Blood Institute

National Institutes of Health

Bethesda, Maryland

Carola Eisenberg, M.D.

Harvard Medical School

Cambridge, Massachusetts

Margery Elfin, Ph.D.

Department of Political Science

Hood College

Washington, District of Columbia
199

VOLUME 3

Sherman Elias, M.D.

Department of Obstetrics/Gynecology

Baylor College of Medicine

Houston, Texas

Linda Elkins, Ph.D.

Hoechst Marion Roussel, Inc.

Kansas City, Missouri

Susan Epstein, M.S., M.Ed.

Center for Women with Disability

Western New York Neuroscience Center

Buffalo General Hospital

Buffalo, New York

Deborah Erickson, M.D.

Section of Urology

Pennsylvania State University College of Medicine

Hershey, Pennsylvania

Sumru Erkut, Ph.D.

Center for Research for Women

Wellesley College

Wellesley, Massachusetts

Sandra Estepa, M.S.

U.S. Public Health Service 

Office on Women’s Health

New York, New York

John J. Estrada, M.D.

Department of Pediatrics

Meharry Medical College

Nashville, Tennessee

Suzette Evans, Ph.D.

Research Foundation for Mental Hygiene

New York, New York

Christine Everett

Office of Women’s Health

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Jay Everhart, M.D., M.P.H.

Epidemiology and Clinical Trials Branch

National Institute of Diabetes and Digestive 

and Kidney Diseases

National Institutes of Health

Bethesda, Maryland

Bonita Falkner, M.D.

Institute for Women’s Health

Allegheny University of Health Sciences

Philadelphia, Pennsylvania

Odom Fanning

Internal Medicine World Report

Bethesda, Maryland

Susan Farrell

National Institute on Alcohol Abuse 

and Alcoholism

National Institutes of Health

Bethesda, Maryland

Susan Farrer

The MayaTech Corporation

Silver Spring, Maryland

Stephen L. Farrow, M.D.

John Dingel Virginia Medical Center

4H University Health Center

Wayne State University School of Medicine

Detroit, Michigan

Denise L. Faustman, M.D., Ph.D.

Immunobiology Laboratory

Medicine/Diabetes Unit

Massachusetts General Hospital

Charlestown, Massachusetts

Gayle Feldman, M.Sc., M.A.

Self Magazine

New York, New York

Diane Felsen, Ph.D.

Department of Urology

Cornell Medical School

New York, New York

Maria Figueroa, M.A., M.B.A.

The Marin Group

Arlington, Virginia

Patricia Finn, M.D.

Respiratory Division

Brigham and Women’s Hospital

Boston, Massachusetts

Loretta P. Finnegan, M.D.

Community Prevention Study

Community Outreach

National Institutes of Health

Bethesda, Maryland

Kate Fiore

The Cancer Letter

Washington, District of Columbia
200

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Polly A. Fitz, M.A., R.D.

The American Dietetic Association

Chicago, Illinois

Jack Fitzsimmons, M.D., M.B.A.

Office of Women’s Health

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Laura Flawn, M.D.

Austin Orthopaedic Clinic

Austin, Texas

John C. Fletcher, Ph.D.

Biomedical Ethics

University of Virginia

Keswick, Virginia

Marie Foegh, M.D., D.Sc.

Department of Surgery

Georgetown University Medical Center

Washington, District of Columbia

Janet Heald Forlini, J.D.

Center to Improve Care of the Dying

Washington, District of Columbia

Jean Fourcroy, M.D., Ph.D.

American Medical Women’s Association

Bethesda, Maryland

Philip C. Fox, D.D.S.

Division of Intramural Research

National Institute of Dental Research

National Institutes of Health

Bethesda, Maryland

Tracy Fox, M.P.H., R.D.

The American Dietetic Association

Washington, District of Columbia

Betsy Foxman, Ph.D.

Department of Epidemiology

University of Michigan

Ann Arbor, Michigan

Erica Frank, M.D., M.P.H.

Women Physicians’ Health Study

Department of Family Medicine and 

Preventive Medicine

Robert W. Woodruff Health Sciences Center

Emory University School of Medicine

Atlanta, Georgia

Patricia Frasier, M.D.

Brigham and Women’s Hospital

Boston, Massachusetts

Marilynn Frederiksen, M.D.

General Obstetrics/Gynecology

Northwestern University Medical School

Chicago, Illinois

Shu Man Fu, M.D.

Department of Internal Medicine

University of Virginia Health Sciences Center

Charlottesville, Virginia

Bruce Fuchs, Ph.D.

Office of Science Education

Office of the Director

National Institutes of Health

Rockville, Maryland

Sheryle Gallant, Ph.D.

Department of Psychology

University of Kansas

Lawrence, Kansas

Elaine Gallin, Ph.D.

State University of New York Health 

Science Center – Brooklyn

Brooklyn, New York

Michele Garber, M.P.H., C.H.E.S.

Gaithersburg, Maryland

Neal Garrett, Ph.D.

School of Dentistry

University of California, Los Angeles

Los Angeles, California

Francisco Garrido, M.D.

National Institute of Public Health

Cuernavaca, Moreles

Mexico

Judith S. Gavaler, Ph.D.

Women’s Health Research Program

Oklahoma Medical Research Foundation

Oklahoma City, Oklahoma

Robert W. Gear, D.D.S., Ph.D.

Department of Restorative Dentistry

University of California

San Francisco, California
201

VOLUME 3

Lynn H. Gerber, M.D.

Rehabilitation Medicine Department

Clinical Center

National Institutes of Health

Bethesda, Maryland

Mary B. Gerwin, J.D.

Government Relations

American Gastroenterological Association

Bethesda, Maryland

Elizabeth Gibbens

Community Development Publications

Silver Spring, Maryland

Linda C. Giudice, M.D., Ph.D.

Division of Reproductive Endocrinology and Infertility

Department of Obstetrics/Gynecology

Stanford University Medical Center

Stanford, California

Hannah Gladfelter

Health Grants and Contracts Weekly

Capitol Publications

Alexandria, Virginia

W. Lou Glasse, M.S.W.

Older Women’s League

Vassar College

Poughkeepsie, New York

Irma E. Goertzen

Magee-Women’s Hospital

Pittsburgh, Pennsylvania

Robert Goldenberg, M.D.

Intramural Research Programs

National Institute of Mental Health

National Institutes of Health

Birmingham, Alabama

Marlene B. Goldman, Sc.D.

Department of Epidemiology

Harvard School of Public Health

Boston, Massachusetts

Jill M. Goldstein, Ph.D.

Department of Psychiatry

Harvard Institute for Psychiatric Epidemiology 

and Genetics

Massachusetts Mental Health Center

Harvard Medical School

Boston, Massachusetts

Edith S.L. Gomberg, Ph.D.

Department of Psychiatry

Alcohol Research Center

University of Michigan School of Medicine

Ann Arbor, Michigan

Sandra Goodbody, M.S.W.

Washington, District of Columbia

Eileen G. Gorman, Ph.D.

Wilmington, Delaware

Julie Graber, Ph.D.

Adolescent Study Program

Teachers University

Columbia University

New York, New York

Patricia A. Grady, Ph.D., R.N.

National Institute of Nursing Research

National Institutes of Health

Bethesda, Maryland

Julie Fleming Graham, M.Ed.

Ogelthorpe County School System

Lexington, Georgia

Norman F. Grant, Jr., M.D.

American Board of Obstetrics and Gynecology, Inc.

Dallas, Texas

Gilman D. Grave, M.D.

Endocrinology, Nutrition, and Growth Branch

Center for Research for Mothers and Children

National Institute of Child Health and 

Human Development

National Institutes of Health

Bethesda, Maryland

Paulette S. Gray, Ph.D.

Division of Extramural Activities

National Cancer Institute

National Institutes of Health

Bethesda, Maryland

Phyllis Greenberger, M.S.W.

Society for the Advancement of Women’s 

Health Research

Washington, District of Columbia

John C. Greene, D.M.D., M.P.H.

School of Dentistry

University of California, San Francisco

San Rafael, California
202

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Letha Y. Griffin, M.D.

American Orthopaedic Society for Sports Medicine

Atlanta, Georgia

Jeane Ann Grisso, M.D., M.Sc.

University of Pennsylvania School of Medicine

Philadelphia, Pennsylvania

Andrew A. Guccione, Ph.D., P.T.

American Physical Therapy Association

Alexandria, Virginia

Racquel Gur, M.D., Ph.D.

Connecticut Mental Health Center

New Haven, Connecticut

Judith K. Gwathmey, U.M.D., Ph.D.

Institute for Cardiovascular Diseases and 

Muscle Research Inc.

Boston University

Cambridge, Massachusetts

Uriel Halbreich, M.D.

Biobehavioral Program

SUNY Clinical Center

State University of New York at Buffalo

Buffalo, New York

Shirley Haley, M.A.

Washington Fax

South Dartmouth, Massachusetts

Lannis Hall-Daniels, M.D., M.P.H.

St. Louis, Missouri

Betty B. Hambleton

Health Resources and Services Administration

Department of Health and Human Services

Rockville, Maryland

Meg Haney, Ph.D.

Columbia University

New York, New York

Eleanor Z. Hanna, Ph.D.

Division of Biometry and Epidemiology

National Institute on Alcohol Abuse and Alcoholism

National Institutes of Health

Bethesda, Maryland

Jo A. Hannafin, M.D., Ph.D.

Hospital for Special Surgery

New York, New York

Leslie Hardy, M.H.S.

Office of Health Policy

Office of the Assistant Secretary for Policy 

and Evaluation

Office of the Secretary

Department of Health and Human Services

Washington, District of Columbia

William R. Harlan, M.D.

Disease Prevention

Office of the Director

National Institutes of Health

Bethesda, Maryland

Hazel J. Harper, D.D.S., M.P.H.

Hazel Harper and Associates

Washington, District of Columbia

Barbara Harrison, M.Sc.

National Institute of Diabetes and Digestive 

and Kidney Diseases

National Institutes of Health

Bethesda, Maryland

Florence P. Haseltine, M.D., Ph.D.

Center for Population Research

National Institute of Child Health and 

Human Development

National Institutes of Health

Bethesda, Maryland

Dorothy Hatsukami, Ph.D.

University of Minnesota

Minneapolis, Minnesota

Steven J. Hausman, M.D.

National Institute of Arthritis and Musculoskeletal 

and Skin Diseases

National Institutes of Health

Bethesda, Maryland

Betty Lee Hawks, M.A.

Office of Minority Health

Office of Public Health and Science

Office of the Secretary

Department of Health and Human Services

Rockville, Maryland

Audrey Tayse Haynes, M.A.

Office for Women’s Initiatives and Outreach

Washington, District of Columbia
203

VOLUME3

Suzanne G. Haynes, Ph.D.

Office of Women’s Health

Office of Public Health and Science

Office of the Secretary

Department of Health and Human Services Washington, District of Columbia

Eugene G. Hayunga, Ph.D.

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Janyce N. Hedetniemi, M.S.

Office of Community Liaison

Office of the Director

National Institutes of Health

Bethesda, Maryland

Cassandra E. Henderson, M.D.

Albert Einstein College of Medicine

Bronx, New York

Maureen Henderson, M.D., Dr.P.H.

Fred Hutchinson Cancer Research Center

University of Washington

Seattle, Washington

Susan L. Hendrix, D.O.

Hutzel Hospital Wayne State University

Detroit, Michigan

Deborah B. Henken, Ph.D.

National Institute of Child Health and 

Human Development

National Institutes of Health

Bethesda, Maryland

Janet Henrich, M.D. Yale University School of Medicine

New Haven, Connecticut

Jean Henry, B.S., M.A., Ph.D.

Center for Research on Women’s Health Texas Woman’s University

Denton, Texas

Mary Hepburn, B.S.

North Platte, Nebraska

Arthur L. Herbst, M.D.

Department of Obstetrics/Gynecology

University of Chicago

Chicago, Illinois

Milton J. Hernandez, Ph.D.

Office of Science Training

National Institute of Allergy and Infectious Diseases

National Institutes of Health

Bethesda, Maryland

A. Regula Herzog, Ph.D.

Survey Research Center

Institute for Social Research

University of Michigan

Ann Arbor, Michigan

Andrew Herzog, M.D., M.Sc.

Neuroendocrine Unit

Beth Israel Deaconess Medical Center

Boston, Massachusetts

Euthymia D. Hibbs, Ph.D.

Division of Services and Intervention Research

Child and Adolescent Treatment and Preventive 

Intervention Research Branch

National Institute of Mental Health

National Institutes of Health

Rockville, Maryland

Linda C. Hodges, Ph.D.

Atlanta Science Center for Women

Agnes Scott College

Decatur, Georgia

Nicolette Horbach, M.D.

The American Urogynecologic Society

Annandale, Virginia

Michaeleen Howatt-Nab, B.A., M.F.A.

Ohio University College of Osteopathic Medicine

Athens, Ohio

Joanne Howes

Bass and Howes, Inc. Washington, District of Columbia

Judith Hsia, M.D.

George Washington University Washington, District of Columbia

Carole Hudgings, Ph.D.

National Institute of Nursing Research

National Institutes of Health

Bethesda, Maryland

Elmer E. Huerta, M.D., M.P.H.

Cancer Risk Assessment and Screening Center Washington Hospital Center Washington, District of Columbia
204

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Carrie P. Hunter, M.D., M.P.H.

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Chyren Hunter, Ph.D.

National Institute on Deafness and Other 

Communication Disorders

National Institutes of Health

Bethesda, Maryland

Joseph K. Hurd, Jr., M.D.

Department of Gynecology

Lahey Hitchcock Clinic Medical Center

Burlington, Massachusetts

Margaret Huyck, Ph.D.

Office of Behavioral and Social Sciences Research

Office of the Director

National Institutes of Health

Bethesda, Maryland

Mary Lloyd Ireland, M.D.

Ruth Jackson Orthopaedic Society

Lexington, Kentucky

Ann S. Jackson

Giovanni Lorenzini Medical Foundation

Houston, Texas

Debbie M. Jackson, M.A.

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Sharon Jackson, M.D.

Laboratory of Host Defenses

National Institute of Allergy and Infectious Diseases

National Institutes of Health

Bethesda, Maryland

Marjorie Kaplan Jeffcoat, D.M.D.

Department of Periodontics

The University of Alabama at Birmingham 

School of Dentistry

Birmingham, Alabama

Kimberly Jeffries-Leonard, Ph.D.

The MayaTech Corporation

Silver Spring, Maryland

Jean Jew, M.D.

Department of Anatomy and Cell Biology

College of Medicine

University of Iowa

Iowa City, Iowa

Katrina Johnson, Ph.D.

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Merrilyn D. Johnson, Ph.D., R.N.

Medical University of South Carolina

Charleston, South Carolina

Tamara Lewis Johnson, M.B.A., M.P.H.

Bureau of Primary Health Care

Health Resources and Services Administration

Department of Health and Human Services

Bethesda, Maryland

Coryl Jones, Ph.D.

Division of Epidemiology and Prevention Research

National Institute on Drug Abuse

National Institutes of Health

Bethesda, Maryland

Johnnye Mae Jones, Ph.D.

School of Science

Hampton University

Hampton, Virginia

Wanda Jones, Dr.P.H.

Office of Women’s Health

Centers for Disease Control and Prevention

Atlanta, Georgia

Debra R. Judelson, M.D., F.A.C.C., F.A.C.P.

American Medical Women’s Association

Beverly Hills, California

Karol Kaltenbach, Ph.D.

Maternal Addiction Treatment Education 

and Research

Department of Pediatrics

Jefferson Medical College

Philadelphia, Pennsylvania

Sunil D. Kapila, D.D.S., M.S., Ph.D.

Department of Growth and Development

School of Dentistry

University of California, San Francisco

San Francisco, California

Hiroko Karan, Ph.D.

Medgar Evers College

City University of New York

Brooklyn, New York
205

VOLUME 3

Anne Kasper, Ph.D.

Society for the Psychological Study of Social Issues

Bethesda, Maryland

Steve Kaufman, M.D.

Center for Population Research

National Institute of Child Health and 

Human Development

National Institutes of Health

Bethesda, Maryland

Marlene Keeling

Chemically Associated Neurological Disorders

Houston, Texas

Gwendolyn Puryear Keita, Ph.D.

American Psychological Association

Washington, District of Columbia

Joseph Keleghan, M.D., M.P.H.

Early Detection and Community Oncology Program

National Cancer Institute

National Institutes of Health

Bethesda, Maryland

Martin J. Kelly, Ph.D.

Department of Physiology and Pharmacology

Oregon Health Sciences University

Portland, Oregon

Thomas H. Kelly, Ph.D.

Department of Behavioral Science

College of Medicine

University of Kentucky

Lexington, Kentucky

Miriam F. Kelty, Ph.D.

National Institute on Aging

National Institutes of Health

Bethesda, Maryland

M. Margaret (Peggy) Kemeny, M.D.

North Shore University Hospital

Manhasset, New York

Teresa R. Kendrix

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Jeanne N. Ketley, Ph.D.

Center for Scientific Review

National Institutes of Health

Bethesda, Maryland

Sooja Kim, Ph.D.

Nutritional and Metabolic Sciences, IRG and 

Endocrinology and Reproductive Sciences

Center for Scientific Review

National Institutes of Health

Bethesda, Maryland

Joan King, Ph.D.

Department of Anatomy and Cellular Biology

Tufts University School of Medicine

Brookline, Massachusetts

Ruth L. Kirschstein, M.D.

Office of the Director

National Institutes of Health

Bethesda, Maryland

Cheryl Kitt, Ph.D.

National Institute of Neurological Disorders 

and Stroke

National Institutes of Health

Bethesda, Maryland

Ann Klassen, Ph.D.

School of Public Health

The Johns Hopkins University

Baltimore, Maryland

Richard D. Klausner, M.D.

National Cancer Institute

National Institutes of Health

Bethesda, Maryland

Luella Klein, M.D.

Women’s Health Issues

American College of Obstetricians and Gynecologists

Washington, District of Columbia

Nancy Klein, M.B.A.

Communications and Public Relations

R.O.W. Sciences, Inc.

Rockville, Maryland

Patti J. Klein, Ph.D.

Dow Corning Corporation

Auburn, Michigan

Dushanka Kleinman, D.D.S., M.Sc.D.

National Institute of Dental Research

National Institutes of Health

Bethesda, Maryland

Barbara A. Koenig, Ph.D.

Stanford University Center for Biomedical Ethics

Palo Alto, California
206

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Ann Kolker

Ovarian Cancer National Alliance

Washington, District of Columbia

Laurie Konsella, M.P.A.

Office on Women’s Health

Department of Health and Human Services

Denver, Colorado

Carol Korenbrot, Ph.D.

Institute for Health Policy Studies

University of California, San Francisco

San Francisco, California

Diane Kostyshyn, B.S.

Lilly Center for Women’s Health

Lilly Corporate Center

Indianapolis, Indiana

Jane Kotchen, M.D., M.P.H.

Department of Epidemiology

Medical College of Wisconsin

Milwaukee, Wisconsin

Sarah Kovner

Office of the Secretary

Department of Health and Human Services

Washington, District of Columbia

Deborah A. Kraut, M.I.L.R., M.Ed.

Office of AIDS Research

Office of the Director

National Institutes of Health

Bethesda, Maryland

Fran Kritz

Self Magazine

Silver Spring, Maryland

Fredi Kronenberg, Ph.D.

Center for Complementary and Alternative 

Medicine for Women’s Health

Columbia University College of Physicians 

and Surgeons

New York, New York

Kimberly Kurilla-Gray

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Howard Kurtzman, Ph.D.

Cognitive Science Program

Behavioral Sciences Research Branch

National Institute of Mental Health

National Institutes of Health

Rockville, Maryland

Leslie J. Kushner, Ph.D.

Urologic Research

Department of Urology

Long Island Jewish Medical Center

New Hyde Park, New York

Sandy Kweder, M.D.

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Pamela S. Laber

Women’s Health

Merck and Company, Inc.

West Point, Pennsylvania

Virginia T. Ladd, R.T.

American Autoimmune Related Diseases Association

Detroit, Michigan

Mary Lamielle

National Center for Environmental Health Strategies

Voorhees, New Jersey

Joseph M. Lane, M.D.

Hospital for Special Surgery

Cornell University Medical College

New York, New York

Patricia Langenberg, Ph.D.

Department of Epidemiology and Preventive Medicine

University of Maryland School of Medicine

Baltimore, Maryland

Judith LaRosa, Ph.D., R.N.

Department of Community Health Sciences

School of Public Health and Tropical Medicine

Tulane University Medical Center

New Orleans, Louisiana

Clarissa LaSalle

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Thomas M. Lasater, Ph.D.

Division of Research

Center for Primary Care and Prevention

Memorial Hospital of Rhode Island/Brown University

Pawtucket, Rhode Island

Deborah Lasky, M.S.

Pharmacia and Upjohn

Herndon, Virginia
207

VOLUME 3

Marianne J. Legato, M.D., F.A.C.P.

Department of Medicine

Columbia University

New York, New York

Wilhelmina Leigh, Ph.D.

Joint Center for Political and Economic Studies

Washington, District of Columbia

Joan M. Leiman, Ph.D.

Commonwealth Fund Commission on Women’s Health

Columbia University

New York, New York

Claude Lenfant, M.D.

National Heart, Lung, and Blood Institute

National Institutes of Health

Bethesda, Maryland

Linda LeResche, Sc.D.

Department of Oral Medicine

University of Washington

Seattle, Washington

Joel Levine, M.D.

Department of Medicine

Science Center

University of Colorado School of Medicine

Denver, Colorado

Anna Levy, M.S.

Planning, Evaluation, and Analysis Branch

Office of Science Policy

National Cancer Institute

National Institutes of Health

Bethesda, Maryland

Isabella Liang, Ph.D.

National Heart, Lung, and Blood Institute

National Institutes of Health

Bethesda, Maryland

Marilyn Madry Lightfoote, M.D., Ph.D.

Center for Devices and Radiological Health

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Marian C. Limacher, M.D.

Division of Cardiology

American College of Cardiology

University of Florida College of Medicine

Gainesville, Florida

Lisa Lindahl

Epilepsy Foundation of America

Colchester, Vermont

Brenda Ling, R.Ph.

Pharmacia and Upjohn, Inc.

Bethesda, Maryland

Robyn Lipner, M.A.

Bass and Howes, Inc.

Washington, District of Columbia

Allan Lock, D.V.M.

National Institute of Child Health and 

Human Development

National Institutes of Health

Bethesda, Maryland

Michael D. Lockshin, M.D.

The Barbara Volcker Center for Women 

and Rheumatic Disease

Hospital for Special Surgery

Cornell University Medical College

New York, New York

Claudia Louis, M.B.A.

American Heart Association

Washington, District of Columbia

Judy Luborsky, Ph.D.

Department of Obstetrics and Gynecology

Rush Medical College

Chicago, Illinois

Joanne Luoto, M.D., M.P.H.

Contraceptive and Reproductive Health

National Institute of Child Health and 

Human Development

National Institutes of Health

Bethesda, Maryland

Peter MacPherson

Faulkner and Gray’s Medical Outcomes

New York, New York

Angela Magliozzi

National Institute of Allergy and Infectious Diseases

National Institutes of Health

Bethesda, Maryland

Veronica Mallet, M.D.

Women’s Continence Center

Hutzel Hospital Division of Gynecology

Wayne State School of Medicine

Detroit, Michigan
208

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Monique K. Mansoura, Ph.D.

National Human Genome Research Institute

National Institutes of Health

Bethesda, Maryland

Pamela Marino

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Eliot Marshall

Science Magazine

Washington, District of Columbia

Shahla Masood, M.D.

Department of Pathology

University of Florida Medical Center

University of Florida

Jacksonville, Florida

Vickie M. Mays, Ph.D.

Department of Psychology

University of California, Los Angeles

Los Angeles, California

Angela Barron McBride, R.N., Ph.D., F.A.A.N.

Indiana University School of Nursing

Indianapolis, Indiana

Mary E. McCaul, Ph.D.

Comprehensive Women’s Center

Johns Hopkins Hospital

Baltimore, Maryland

Catherine McDermott

National Committee for Quality Health Care

Washington, District of Columbia

Joan A. McGowan, Ph.D.

Musculoskeletal Diseases Branch

National Institute of Arthritis and Musculoskeletal 

and Skin Diseases

National Institutes of Health

Bethesda, Maryland

Eileen McGrath, J.D.

American Medical Women’s Association

Alexandria, Virginia

Donald McNellis, M.D.

National Institute of Child Health and 

Human Development

National Institutes of Health

Bethesda, Maryland

Anne McTiernan, M.D., Ph.D.

WHI Clinical Coordinating Center

Seattle, Washington

Michelle Meadows, B.A.

Closing the Gap

Office of Minority Health

Department of Health and Human Services

Rockville, Maryland

Janet E. Meleney

National Resource Center

Washington, District of Columbia

Nancy K. Mello, Ph.D.

McLean Hospital

Harvard Medical School

Belmont, Massachusetts

Michael Mendelsohn, M.D.

Molecular Cardiology Research Center

NE Medical Center

Boston, Massachusetts

Jack H. Mendelson, M.D.

Alcohol and Drug Abuse Research

McLean Hospital/Harvard Medical School

Belmont, Massachusetts

Laverne G. Mensah, M.D.

Department of Obstetrics/Gynecology

Medical College of Georgia

Augusta, Georgia

Ruth B. Merkatz, R.N., Ph.D., F.A.A.N.

Office of Women’s Health

Pfizer Inc

New York, New York

Vanessa Merton, J.D.

Pace University School of Law

White Plains, New York

Barbara A. Mikulski, M.S.W. (D-MD)

United States Senate

Washington, District of Columbia

Virginia Miller, Ph.D.

Mayo Clinic

Rochester, Minnesota

Nancy Milliken, M.D.

Center of Excellence in Women’s Health

University of California at San Francisco

San Francisco, California
209

VOLUME3

Sherry Mills, M.D., M.P.H.

Prevention and Control Extramural Branch

National Cancer Institute

National Institutes of Health

Bethesda, Maryland

Sukhbir S. Mokha, Ph.D.

Department of Anatomy and Physiology

Meharry Medical College

Nashville, Tennessee

Joseph M. Montella, M.D.

Department of Obstetrics/Gynecology

Jefferson Medical College

Philadelphia, Pennsylvania

Donnica Moore, M.D.

Sapphire Women’s Health Group

Neshamic Station, New Jersey

Constance A. Morella, M.A. (R-MD)

United States House of Representatives Washington, District of Columbia

Marcelle Morrison-Bogorad, Ph.D.

National Institute on Aging

National Institutes of Health

Bethesda, Maryland

Cynthia Casson Morton, Ph.D.

Departments of Obstetrics, Gynecology, 

and Reproductive Biology

Brigham and Women’s Hospital

Boston, Massachusetts

Myla J. Moss, M.S.W., M.A.

Office of Government Relations

American Association of Colleges of 

Osteopathic Medicine

Chevy Chase, Maryland

Ann Mulligan

The DES Cancer Network Washington, District of Columbia

Nathaniel Murdock, M.D.

National Medical Association Washington, District of Columbia

Robert F. Murray, Jr., M.D.

Pediatrics and Medicine

Howard University College of Medicine Washington, District of Columbia

Peter W. Nathanielsz, M.D., Ph.D., Sc.D.

Laboratory for Pregnancy and Newborn Research

Department of Physiology

College of Veterinary Medicine

Cornell University

Ithaca, New York

Eleanor Nealon

Office of Liaison Activities

National Cancer Institute

National Institutes of Health

Bethesda, Maryland

J. Lee Nelson, M.D.

Immunogenetics

Fred Hutchinson Cancer Research Center

The University of Washington

Seattle, Washington

Sasha Nemecek 

Scientific American Magazine

New York, New York

Roberta Ness, M.D., M.P.H.

Department of Epidemiology

Graduate School of Public Health

University of Pittsburgh

Pittsburgh, Pennsylvania

Ann Neville-Jan, Ph.D., O.T.R.

National Center for Medical Rehabilitation 

and Research

National Institutes of Health

Rockville, Maryland

Mary Lynn Newport, M.D.

Department of Orthopaedics

University of Connecticut Health Center

Farmington, Connecticut

Cherie Nichols, M.B.A.

Planning, Evaluation, and Analysis Branch

Office of Science Policy

National Cancer Institute

National Institutes of Health

Bethesda, Maryland

Gloria Nichols, Ph.D.

Department of Pharmacy Care Administration

College of Pharmacy

The University of Georgia

Athens, Georgia
210

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Jennifer Niebyl, M.D.

University of Iowa, Hospitals and Clinics

Iowa City, Iowa

Linda C. Niessen, D.M.D., M.P.H.

Department of Public Health Sciences

Baylor College of Dentistry

Dallas, Texas

Ralph M. Nitkin, Ph.D.

Mental Retardation and Developmental 

Disabilities Branch

National Institute of Child Health and 

Human Development

National Institutes of Health

Bethesda, Maryland

Kimberly Nixon

College of Pharmacy and Department of Psychology

Institute of Neuroscience

University of Texas at Austin

Austin, Texas

Cathrine Noe

Arthritis Foundation

Washington, District of Columbia

Judy Norsigian, B.A.

Boston Women’s Health Book Collective

Somerville, Massachusetts

Nancy J. Norton, B.S.

International Foundation for Functional 

Gastrointestinal Disorders

Milwaukee, Wisconsin

Antonia C. Novello, M.D.

Department of Health, Policy, and Management

The Johns Hopkins University

Baltimore, Maryland

Leroy M. Nyberg, M.D., Ph.D.

Division of Kidney, Urologic, and Hematologic Diseases

National Institute of Diabetes and Digestive 

and Kidney Diseases

National Institutes of Health

Bethesda, Maryland

Steven Offenbacher, D.D.S., Ph.D.

Dental Research Center

University of North Carolina

Chapel Hill, North Carolina

Claudia Oglivie, M.S.

United States Army

Fort Detrick, Maryland

Barbara A Osborne, Ph.D.

Department of Veterinary and Animal Sciences

University of Massachusetts

Amherst, Massachusetts

Hibah O. Osman, M.D.

Medical University of South Carolina

Charleston, South Carolina

Ann Ouyang, M.B., B.S.

Section of Gastroenterology and Hepatology

Milton S. Hershey Medical Center

Hershey, Pennsylvania

Pamela Ouyang, M.D.

Johns Hopkins University School of Medicine

Baltimore, Maryland

Kim Painte

USA Today

Arlington, Virginia

Delores L. Parron, Ph.D.

National Institute of Mental Health

National Institutes of Health

Rockville, Maryland

Estella Parrott, M.D., M.P.H.

Office of Research on Minority and Women’s Health

National Institute of Allergy and Infectious Diseases

National Institutes of Health

Bethesda, Maryland

Barbara Parry, M.D.

Department of Psychiatry

University of California, San Diego

La Jolla, California

Nancy L. Parsley, D.P.M.

American Podiatric Medical Association

Bethesda, Maryland

Roland A. Pattillo, M.D.

Department of Obstetrics/Gynecology

Morehouse School of Medicine

Atlanta, Georgia

Mariclaire Payawal

Bristol-Myers Squibb Foundation, Inc.

New York, New York

Christopher K. Payne, M.D.

Division of Urology

Stanford Medical Center

Stanford University

Stanford, California
211

VOLUME3

Deborah Pearlman, Ph.D.

American Cancer Society

Framingham, Massachusetts

Jane Pearson, Ph.D.

Preventive Interventions Research Program

Adult and Geriatric Treatment Branch

National Institute of Mental Health

National Institutes of Health

Rockville, Maryland

Kathryn Peek, Ph.D.

Medical Education Program in Female 

Clinical Anatomy

University of Texas, Houston

Houston, Texas

Kenneth A. Perkins, Ph.D. Western Psychiatric Institute and Clinic

University of Pittsburgh

Pittsburgh, Pennsylvania Vivian W. Pinn, M.D.

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Frances A. Pitlick, Ph.D.

American Society for Investigative Pathology

Bethesda, Maryland

Dana Points

American Health for Women Magazine

New York, New York

Russell E. Poland, Ph.D.

Department of Psychiatry

Harbor – UCLA Medical Center

University of California, Los Angeles

Torrance, California

Ellyn J. Pollack, M.A., APR

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Jann Primus, Ph.D.

Biology Department

Spelman College

Atlanta, Georgia

Christina Pruett

North Platte, Nebraska

Joan Rachlin, J.D., M.P.H.

Public Responsibility in Medicine and Research

Boston, Massachusetts

Elizabeth Rahdart, Ph.D.

National Institute on Drug Abuse

National Institutes of Health

Rockville, Maryland

Amelie G. Ramirez, Dr.P.H.

Center for Cancer Control Research

Baylor College of Medicine

Houston, Texas

Bette A. Rank

American Foundation for Urologic Disease, Inc.

Baltimore, Maryland

Mrinalini C. Rao, Ph.D.

Department of Physiology and Biophysics

University of Illinois at Chicago College of Medicine

Chicago, Illinois Vicki Ratner, M.D.

International Cystitis Association

New York, New York

Nancy Reame, M.S.N., Ph.D.

Center for Nursing Research

University of Michigan

Ann Arbor, Michigan

Maryann Redford, D.D.S., M.P.H.

National Institute of Dental Research

National Institutes of Health

Bethesda, Maryland

Joan Y. Reede, M.D., M.P.H., M.S.

Minority Faculty Development Program

Harvard Medical School

Boston, Massachusetts

Amy L. Reisch, M.S.W.

FOCUS on Women’s Health

University of Pennsylvania

Philadelphia, Pennsylvania

Kimber Richter, M.D.

Center for Devices and Radiological Health

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland
212

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Karen Riley

Clinica: World Medical Device and Diagnostic News

Bowie, Maryland

Elena Rios, M.D., M.S.P.H.

Public Health Service Office on Women’s Health

Office of Public Health and Science

Office of the Secretary

Department of Health and Human Services

Washington, District of Columbia

James M. Roberts, M.D.

Magee-Women’s Research Institute

Pittsburgh, Pennsylvania

Joanne Roberts, Ph.D.

SAIC

Frederick, Maryland

Joyce E. Roberts, Ph.D., F.A.A.N.

Women’s Health

University of Illinois at Chicago

Chicago, Illinois

Pamela G. Robey, Ph.D.

Craniofacial and Skeletal Disease Branch

Division of Intramural Research

National Institute of Dental Research

National Institutes of Health

Bethesda, Maryland

Lara Robillard, B.A.

Pharmaceutical Research and Manufacturers of America

Washington, District of Columbia

David Robinson, Ph.D.

Vascular Research Program

National Heart, Lung, and Blood Institute

National Institutes of Health

Bethesda, Maryland

Laurie Robinson, M.T.S.

Office on Women’s Health

U.S. Public Health Service

Department of Health and Human Services

Boston, Massachusetts

Roxanne A. Rodney, M.D.

Division of Cardiology

Columbia-Presbyterian Medical Center

Columbia University

New York, New York

Helen Rodriguez-Trias, M.D.

Public Health Institute

The Pacific Institute for Women’s Health

Los Angeles, California

Marianne Rollings, B.S.

Virginia Department of Medical Assistance Services

Richmond, Virginia

Adele Roman, M.S.N., R.N.

National Institute on Drug Abuse

National Institutes of Health

Rockville, Maryland

Martha Romans

Jacobs Institute of Women’s Health

Washington, District of Columbia

Annette Ronnbla, M.S.

Washington, District of Columbia

John Rose, M.D.

Department of Neurology

University of Utah

Salt Lake City, Utah

Joan K. Rosenbach, Ph.D.

JKR Associates

Chevy Chase, Maryland

Barbara Ross-Lee, D.O.

College of Osteopathic Medicine

Ohio University

Athens, Ohio

Karen H. Rothenberg, J.D., M.P.A.

University of Maryland School of Law

Baltimore, Maryland

Deborah Rubin, M.D.

Division of Gastroenterology

Washington University School of Medicine

St. Louis, Missouri

Maryann T. Ruda, Ph.D.

Cellular and Molecular Mechanisms

Pain and Neurosensory Mechanisms Branch

Division of Intramural Research

National Institute of Dental Research

National Institutes of Health

Bethesda, Maryland

Joyce Rudick

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland
213

VOLUME 3

John Rugh, Ph.D.

Dental School, Orthodontics

University of Texas Health Sciences Center

San Antonio, Texas

Elizabeth Ruksznis

American Psychological Society

Washington, District of Columbia

Susan Runner, D.D.S., M.A.

Dental Devices Branch

Center for Devices and Radiological Health

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Rosalie Sagraves, Pharm.D., F.C.C.P.

College of Pharmacy

University of Illinois at Chicago

Chicago, Illinois

Sharon Samber

National Clearinghouse for Alcohol and 

Drug Information

Rockville, Maryland

Charlotte (Barney) Sanborn, Ph.D.

Center for Research on Women’s Health

Texas Woman’s University

Denton, Texas

Gloria Sarto, M.D., Ph.D.

Obstetrics and Gynecology

University of New Mexico School of Medicine

Albuquerque, New Mexico

Anne Sassaman, Ph.D.

Division of Extramural Research and Training

National Institute of Environmental Health Sciences

National Institutes of Health

Research Triangle Park, North Carolina

Gerald Schatten, Ph.D.

Center for Women’s Health

Oregon Health Sciences University

Beaverton, Oregon

Eleanor Schron, M.S., R.N., F.A.A.N.

National Heart, Lung, and Blood Institute

National Institutes of Health

Bethesda, Maryland

Joan P. Schwartz, Ph.D.

National Institute of Neurological Disorders 

and Stroke

National Institutes of Health

Bethesda, Maryland

Julia Scott, R.N.

National Black Women’s Health Project

Washington, District of Columbia

Susan Scott, M.D.

Department of Pediatrics, Ambulatory Care

UNM Health Sciences Center

University of New Mexico School of Medicine

Albuquerque, New Mexico

Veronica J. Scott, M.D., M.P.H.

Center on Aging

Meharry Medical College

Nashville, Tennessee

Barbara Seaman

New York, New York

Diane K. Seay

Girls and Mentors Manifesting Achievement Project

National Association for the Advancement of 

Women in Science

University of New Mexico

Albuquerque, New Mexico

Wesley Segawa

Emory University School of Nursing

Hilo, Hawaii

Susanna Serrate-Sztein, Ph.D.

Arthritis Program

National Institute of Arthritis and Musculoskeletal 

and Skin Diseases

National Institutes of Health

Bethesda, Maryland

Emily Shactor, Ph.D.

Center for Biologics, Evaluation, and Research

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Ellen R. Shaffer, M.P.H.

Special Projects

Agency for Health Care Policy and Research

Rockville, Maryland

Sally Shaywitz, M.D.

Yale University School of Medicine

Woodbridge, Connecticut

M. Katherine Shear, M.D.

Western Psychiatric Institute and Clinic

University of Pittsburgh

Pittsburgh, Pennsylvania
214

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Amy Shenker, M.P.P.

Porter Novelli

Washington, District of Columbia

Audrey Sheppard

Office of Women’s Health

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Amanda Sherman

DES Action, USA

Siasconset, Massachusetts

Sherry Sherman, Ph.D.

Clinical Endocrinology and Osteoporosis Research

Geriatrics Program

National Institute on Aging

National Institutes of Health

Bethesda, Maryland

Cynthia Shewan, Ph.D.

Research and Scientific Affairs

American Academy of Orthopaedic Surgeons

Rosemont, Illinois

Eleanor G. Shore, M.D., M.P.H.

Harvard Medical School

Boston, Massachusetts

Sally A. Shumaker, Ph.D.

Department of Public Health Service

Social Sciences and Health

Wake Forest University Medical Center

Bowman Gray School of Medicine

Winston-Salem, North Carolina

Steven G. Silverberg, M.D.

Department of Anatomic Pathology

The University of Maryland Medical System

Baltimore, Maryland

Susan F. Silverton, M.D., Ph.D.

School of Dental Medicine

University of Pennsylvania

Philadelphia, Pennsylvania

Louise M. Slaughter, M.S. (D-NY)

United States House of Representatives

Washington, District of Columbia

Harold C. Slavkin, D.D.S.

National Institute of Dental Research

National Institutes of Health

Bethesda, Maryland

Lois Slavkin

National Institute of Dental Research

National Institutes of Health

Bethesda, Maryland

Tracey Small Nilson, M.D.

University of Connecticut

Hartford, Connecticut

Wendy B. Smith, Ph.D.

National Institute on Alcohol Abuse and Alcoholism

National Institutes of Health

Rockville, Maryland

Lynn Snyder-Mackler, Sc.D., P.T.

Section on Research

University of Delaware

American Physical Therapy Association

Newark, Delaware

Linda Sommerfield

Department of Surgery

Section of Otolaryngology

Yale University School of Medicine

New Haven, Connecticut

Christine G. Spain, M.A.

President’s Council on Physical Fitness and Sports

Office of Public Health and Science

Office of the Secretary

Department of Health and Human Services

Washington, District of Columbia

Rebecca Spieler

The Blue Sheet

Chevy Chase, Maryland

Amanda Lee Spitler, J.D.

American College of Rheumatology

Washington, District of Columbia

Shobha Sriharan, Ph.D.

Department of Agriculture

Sponsored Programs (NIH)

Virginia State University

Petersburg, Virginia

Sharilyn Stanley, M.D.

National Institute of Allergy and Infectious Diseases

National Institutes of Health

Bethesda, Maryland
215

VOLUME3

Carolyn Stern, M.D.

Family Practice Center

Park Ridge, Illinois

Donna E. Stewart, M.D., D.Psych.

The Toronto Hospital

University of Toronto

Toronto, Ontario, Canada

Louis Stokes, J.D. (D-OH)

United States House of Representatives Washington, District of Columbia

Ora Lee Strickland, Ph.D.

Nell Hodgson Woodruff School of Nursing

Emory University

Atlanta, Georgia

Deborah Studen-Pavlovich, D.M.D.

Division of Women and Minority Affairs

School of Dental Medicine

University of Pittsburgh

Pittsburgh, Pennsylvania

Anne E. Sumner, M.D.

Institute of Women’s Health, Allegheny

Philadelphia, Pennsylvania

Linda Sussman, Ph.D.

Office of Research on Women’s Health

National Institutes of Health

Bethesda, Maryland

Dace Svikis, Ph.D.

Johns Hopkins University School of Medicine

Baltimore, Maryland

Ana Szarfman, M.D., Ph.D.

Center for Drug Evaluation and Research

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Ramona Tascoe, M.D.

Council on the Concerns of Women Physicians

National Medical Association

Oakland, California

Anne S. Tatem, M.P.A.

National Institute of Arthritis and Musculoskeletal 

and Skin Diseases

National Institutes of Health

Rockville, Maryland

Sheila E. Taube, Ph.D.

Cancer Diagnosis Program

Division of Cancer Treatment

National Cancer Institute

National Institutes of Health

Rockville, Maryland

Anne L. Taylor, M.D. Women’s Health Programs

Department of Medicine

University Hospital of Cleveland

Case Western Reserve University

Cleveland, Ohio

Diana Taylor, Ph.D., R.N.

Department of Family Health Care Nursing

University of California, San Francisco

San Francisco, California

Nancy Teed, M.A.

Houston Associates, Inc.

Silver Spring, Maryland

Linda A. Teplin, Ph.D.

Northwestern University Medical School

Chicago, Illinois

Pushpa V. Thadani, Ph.D.

National Institute on Drug Abuse

National Institutes of Health

Rockville, Maryland

Linda A. Thomas, Ph.D.

Inherited Diseases and Disorders Program

Division of Extramural Research

National Institute of Dental Research

National Institutes of Health

Bethesda, Maryland

Sarah Moody Thomas, Ph.D.

Stanley Scott Cancer Center

Louisiana State University Medical Center

New Orleans, Louisiana

Diane S. Thompson, M.D. Western Psychiatric Institute and Clinic

University of Pittsburgh

Pittsburgh, Pennsylvania

Winston E. Thompson, Ph.D.

Department of Obstetrics and Gynecology

Morehouse School of Medicine

Atlanta, Georgia
216

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Brenda B. Toner, Ph.D.

Women’s Mental Health Research Program

Clark Institute of Psychiatry

University of Toronto

Toronto, Ontario, Canada

Laura Lowe Tosi, M.D.

Children’s National Medical Center

George Washington School of Medicine

Washington, District of Columbia

Edward L. Trimble, M.D., M.P.H.

Surgery Section

Cancer Therapy Evaluation Program

Division of Cancer Treatment, Diagnosis, and Centers

National Cancer Institute

National Institutes of Health

Bethesda, Maryland

Theresa Tuigo, M.P.H., M.B.A.

Food and Drug Administration

Department of Health and Human Services

Rockville, Maryland

Lorraine Tulman, R.N., D.N.Sc.

Agency for Health Care Policy and Research

Rockville, Maryland

Patricia Turner

National Institute of Neurological Disorders 

and Stroke

National Institutes of Health

Bethesda, Maryland

Sandra Million Underwood, R.N., Ph.D.

University of Wisconsin – Milwaukee

Milwaukee, Wisconsin

Wulf H. Utian, Ph.D.

Department of Obstetrics and Gynecology

Department of Reproductive Biology

Case Western Reserve University

Cleveland, Ohio

Henrikas Vaitkevicius, B.S.

John Dingle Virginia Medical Center

Wayne State University

Detroit, Michigan

Ann VanSant, P.T.

Section on Research

Physical Therapy Department

Temple University

American Physical Therapy Association

Philadelphia, Pennsylvania

Claudette Varricchio, D.S.N.

Division of Cancer Prevention and Control

National Cancer Institute

National Institutes of Health

Bethesda, Maryland

Donald R. Vereen, M.D., M.P.H.

Office of the Director

National Institute on Drug Abuse

National Institutes of Health

Rockville, Maryland

Ebrahim Versi, M.D., Ph.D., M.R.C.O.G., B.S.

Department of Obstetrics/Gynecology

Brigham and Women’s Hospital

Boston, Massachusetts

Lydia Villa-Komaroff, Ph.D.

Northwestern University

Evanston, Illinois

Donna L. Vogel, M.D., Ph.D.

National Institute of Child Health and 

Human Development

National Institutes of Health

Bethesda, Maryland

Rhonda Voskuhl, M.D.

Department of Neurology

University of California

Los Angeles, California

Meredith Wadman

Nature

Washington, District of Columbia

Charlene Waldman

The Paget Foundation for Paget’s Disease of Bone 

and Related Disorders

New York, New York

Jacqueline Wallen, Ph.D.

Department of Family Studies

College of Health and Human Performance

University of Maryland

College Park, Maryland

Denise C. Webster, R.N., Ph.D.

School of Nursing

University of Colorado Health Sciences Center

Denver, Colorado
217

VOLUME 3

Anita Corman Weinblatt, Ph.D.

Immunological Sciences Study Section

Initial Review Group

Center for Scientific Review

National Institutes of Health

Bethesda, Maryland

Carl Weiner, M.D.

OB/GYN Reproductive Services

University of Maryland

Baltimore School of Medicine

Baltimore, Maryland

Constance Weinstein, Ph.D.

Edmonds, Washington

Jane Weintraub, D.D.S., M.P.H.

Department of Dental Public Health and Hygiene

School of Dentistry

University of California, San Francisco

San Francisco, California

Gerson Weiss, M.D.

Department of Obstetrics/Gynecology

UMDNJ – New Jersey Medical School

Newark, New Jersey

Kim Weiss

National Association of Professionals in 

Women’s Health

Chicago, Illinois

Sheila R. Weiss, Ph.D.

University of Maryland at Baltimore

Baltimore, Maryland

Sandra Welner, M.D.

Primary Care Gynecology for Women with Disabilities

Silver Spring, Maryland

Nanette K. Wenger, M.D.

Emory University School of Medicine

Atlanta, Georgia

Cora Lee Wetherington, Ph.D.

National Institute on Drug Abuse

National Institutes of Health

Rockville, Maryland

Cornelia Weyand, M.D., Ph.D.

Department of Medicine

Division of Rheumatology

Mayo Clinic and Foundation

Rochester, Minnesota

Judith M. Whalen, M.P.A.

National Institute of Child Health and 

Human Development

National Institutes of Health

Bethesda, Maryland

Caroline C. Whitacre, Ph.D.

Department of Microbiology/Immunology

Ohio State University

Columbus, Ohio

Alex White, D.D.S., Dr.P.H.

Center for Health Research

Kaiser Permanente

Portland, Oregon

Catherine A. White, Ph.D.

College of Pharmacy

The University of Georgia

Athens, Georgia

Kristene E. Whitmore, M.D.

Allegheny University

Philadelphia, Pennsylvania

Judy Williams, Ph.D.

School of Science and Technology

Southeastern Oklahoma State University

Durant, Oklahoma

Sharon Wilsnack, Ph.D.

Department of Neuroscience

University of North Dakota School of Medicine 

and Health Sciences

Grand Forks, North Dakota

Joanne A.P. Wilson, M.D., F.A.C.P.

Division of Gastroenterology

Duke University Medical Center

Durham, North Carolina

Marlene A. Wilson, Ph.D.

Department of Pharmacology

University of South Carolina School of Medicine

Columbia, South Carolina

Deborah M. Winn, Ph.D.

Oral Health Promotion

Risk Factors and Molecular Epidemiology Branch

Division of Intramural Research

National Institute of Dental Research

National Institutes of Health

Bethesda, Maryland
218

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

Richard Winneker, Ph.D.

Women’s Health Research Institute

Wyeth-Ayerst Research

Radner, Pennsylvania

Mollie Winston, D.D.S.

Atlanta, Georgia

Susan Wise, B.S.

Office of Planning, Evaluation, and Communication

National Institute of Dental Research

National Institutes of Health

Bethesda, Maryland

Whitney Witt, M.P.H.

Office of Science and Epidemiology

HIV/AIDS Bureau

Health Resources and Services Administration

Department of Health and Human Services

Rockville, Maryland

Jacqueline Wolf, M.D.

Division of Gastroenterology

Brigham and Women’s Hospital

Boston, Massachusetts

Susan F. Wood, Ph.D.

Public Health Service Office on Women’s Health

Office of Public Health and Science

Office of the Secretary

Department of Health and Human Services

Washington, District of Columbia

Nancy Fugate Woods, Ph.D., R.N.

Center for Women’s Health Research

University of Washington, Seattle

Seattle, Washington

Raymond J. Woosley, M.D., Ph.D.

Department of Pharmacology

Georgetown University Medical Center

Washington, District of Columbia

Darlene Yee, Ed.D., C.H.E.S.

College of Health and Human Services

San Francisco State University

San Francisco, California

Ruth York, R.N., Ph.D.

Association of Women’s Health, Obstetrics and 

Neonatal Nurses

Washington, District of Columbia

Roxanne Ward Zaghab, M.S.W.

Department of Epidemiology and Preventive Medicine

University of Maryland School of Medicine

Baltimore, Maryland

Cheryl Zimmerman, Ph.D.

Department of Pharmaceutics

College of Pharmacy

University of Minnesota

Minneapolis, Minnesota
219

VOLUME 3

A

abortion 11, 50, 54–56, 110

abuse

alcohol and other drug abuse 20, 42, 110–13,

183, 185

psychological abuse 20–22, 40, 42–44

physical abuse 20–22, 24, 26, 40–42, 182

activities of daily living 58, 121

AIDS 11–14, 16, 18, 20, 33, 40, 66, 81–82, 88, 112,

120, 129, 136

alcoholism 22, 110, 113

arthritis

lupus 17, 32, 58–59, 93–94, 121, 161–63, 166

osteoarthritis 59, 116, 118, 120–21, 161–62,

171–74

rheumatoid arthritis 50, 58–59, 93–94, 121, 

128, 144, 161–62

autoimmune disease 31, 93–95, 162, 166

B

basic science 19, 30, 32, 39, 63, 114, 124, 132, 

142, 165, 170

behavioral

research iii, 1–2, 30, 32, 50, 90

factors in women’s health 20, 90–91, 100

bone

disorders 120, 172, 175, 178–79

densitometry 48, 105–08, 164, 175

C

cancer

breast 17, 19, 34, 37, 50, 66, 83–84, 89, 95, 

98, 103, 129, 158, 164, 166, 181, 185

colorectal 181

gynecologic 13, 17, 19, 33–37, 92, 114–15,

157–58

lung 65–66, 77, 129, 181

screening 8, 18, 35, 92, 105, 165, 181, 185

treatment 18, 33, 35–36, 83–84, 115–15, 

165, 185

cardiovascular disease 6, 16–17, 80, 114, 120, 125,

149, 165–66, 185

career

biomedical 2, 184

issues for women scientists iii, 2

caregiving 68, 88, 91

chronic fatigue syndrome 14

clinical trials 1, 16, 19, 35–37, 39, 48, 69, 81, 84,

106, 114, 136, 142, 174

combination therapies 47

contraception 11, 54, 88, 102

curricula

medical school 15, 21, 31

dental school 31

D

data 5, 7–8, 18, 23, 25–26, 38, 46, 49, 56, 65, 67–69,

73, 75, 78, 83, 100–01, 105–06, 108, 116, 122,

125, 131–32, 141–42, 146–48, 154, 165–66,

169–70, 177

diabetes 17, 22, 38, 50, 61, 72, 80, 87, 94, 97, 103,

116, 125, 136, 147, 183

diethylstilbestrol (DES) 114–15, 156

digestive diseases 122, 180

disability 7, 14–15, 18–19, 58, 63, 67, 80, 94, 96,

103, 121–22, 141, 143, 173–74, 176, 178

dying, care of the 67–68

E

early detection and prevention 114, 185

eating disorders 5, 20, 22, 42, 49, 165–66, 175, 183

education

professional education 12, 15, 19, 21, 39–40, 43,

53–55, 57, 68, 70, 76, 78, 82, 92, 94, 114,

122–24, 131–34, 136–39, 144, 150–51, 157,

161, 165–68, 170–72, 175

patient eduction 11, 18–19, 30, 33, 38–40, 55,

64, 66, 74, 76, 94, 104, 106, 115, 120, 137,

139, 144, 161, 167

environmental health 96

INDEX
220

A GENDA FOR R ESEARCH ON W OMEN ’ S H EALTH FOR THE 2 1 S T C ENTURY

epidemiologic research 30, 48

epilepsy 98–102, 166

estrogen 47, 49, 66, 77, 84, 89, 105, 113–15, 157–58,

164, 174–75, 177, 180–81, 183

ethnicity 52, 57, 90–91, 119, 152, 164

exercise 6, 47–49, 80–81, 88, 104–07, 118, 125, 127,

164, 172–73, 175

F

fibromyalgia 16, 23, 58

foot disorders 125–27

fractures 46–50, 60, 63–64, 66, 80, 87, 103–06, 108,

116, 119, 164, 174–77

functional disability 19

G

gallstone disease 181–82

gender differences

gender harassment 43

gender-based biology 76–78

genetics

genetic technology 50–51, 55–56

genetic testing 50–51, 54–57, 166, 185

genetic counseling 51–52, 55–57

H

headaches 22–23, 84

health policy 17, 51, 76, 78

health promotion 17, 64–65, 150, 186

hepatitis 38–40, 94

hormones

hormone replacement therapy 97, 102, 105, 

113, 115, 120, 146, 158–59, 163, 186

human immunodeficiency virus (HIV) 12–14, 18, 20,

40, 81–82, 88, 112, 136

hypertension 22–23, 38, 42, 136, 183

I

immune function 112

implants, silicone 165

incidence 7, 11, 14, 18, 21–23, 32–34, 37, 46, 48–49,

56, 60–61, 65, 78–79, 81, 83, 89, 93, 102, 106,

115–17, 122, 125–26, 143–44, 150, 162, 175,

177, 180, 182–83, 185

infectious diseases 18

informed consent

informed medical decisionmaking 166–67

injuries

shoulder 60

athletic/sport injuries 78–80, 83, 127, 171–72,

176–77

interstitial cystitis (IC) 137–43

irritable bowel syndrome 22, 42, 122–24, 182

L

lifestyle 7, 9, 19, 70, 85, 87, 100, 104, 117–18,

149–50, 164

liver diseases 38–39, 183

low birthweight 18, 41

M

menopause 31, 62, 83–84, 99, 101–02, 104–05, 110,

115, 117, 125, 145, 159, 164, 178, 180, 186

menstrual cycle 99, 101, 110–13, 182

mental health 6, 18, 32, 42, 73, 87, 126, 165–66

mentoring 152–53, 170, 184

microbicides 11–13

minority women 38, 43, 46, 135

multiple chemical sensitivities 96–97

musculoskeletal problems 81, 116, 118

N

nicotine replacement therapy 129–30

nutrition 104, 107, 149, 151

O

obesity 20, 87, 97, 117, 149, 161, 172, 183

orthopaedics 172, 174

osteoporosis 6, 16–17, 19, 38, 46–50, 60, 77, 80, 83,

87, 103–10, 114, 116–17, 120, 146, 149, 161,

164–65, 171–72, 174–75, 177–78, 180

outcomes iii, 2, 5–6, 19, 39–41, 58–60, 65, 67, 69,

78, 91, 97, 101–02, 114, 119–21, 147–50, 154,

157, 166–67, 174–77, 182–83, 185

P

pain 22–23, 25, 30–31, 40–41, 47–48, 62–63, 66–70,

72, 75, 87, 103, 116–18, 122–28, 138–44, 146,

161–62, 164, 173, 178, 182–83

pelvic floor disorders 86

pelvic floor dysfunction 86, 177
221

VOLUME 3

peptic ulcer disease 182–83

pharmacology

pharmacokinetics and pharmacodynamics of 

drug therapy 111, 145

physical activity 5–7, 9, 16, 38, 48, 80, 87, 97, 104,

110, 117, 127, 149, 178

physical disability 90

physical therapy 60–61, 63, 151, 161

poverty 18, 20, 52, 88, 185

pregnancy

ectopic pregnancy 12–13, 83–84, 158

prenatal care 18, 41, 50, 53, 154–55

prevalence 12, 32, 38, 40–42, 58, 61, 65–66, 86, 

93, 103, 105–06, 121–22, 126, 128–29, 137, 

150, 172, 174, 177–78, 182

prevention; intervention; research 9, 38, 69–70, 

76, 78, 80–81, 83, 97, 114, 118, 166, 185–86

psychosocial factors 90, 150

Q

quality of life 6, 58–59, 66, 68–69, 80, 87, 90–91,

100–03, 107, 123, 125–26, 128, 138, 149–50,

166, 173, 175

R

rehabilitation 5, 48, 60–63, 78, 80, 103, 114, 176

reproductive health 11, 36, 100, 102, 165, 185

risk factors 32, 41, 50, 84, 97, 105–06, 120, 

172–73, 175

S

scleroderma 59, 93, 161, 163–64

scoliosis 66

sexual assault 40

sexually transmitted disease (STDs) 11–14, 40

silicone implants 88

Sjögren’s syndrome 30–33, 161

smoking 41, 65–66, 77, 88, 97, 104–07, 114,

129–30, 175

Specialized Program of Research Excellence 

(SPORE) 35

sports medicine 83

stress 18, 23, 25, 28–29, 31, 42, 71, 81, 118, 126,

144, 155, 172, 177

stroke 17, 50, 80, 162

surveillance 7–9, 88, 181

T

toxic chemicals 88

training 5, 10, 17, 20–21, 25, 35–36, 52, 54, 65, 82,

87, 104, 110, 134–35, 153, 168–71, 184

U

urinary incontinence 80, 86, 137–38

V

violence 17, 20–21, 24, 26, 28–29, 41–43, 81, 185

vitamin D 47–48, 104

W

weight control 6

223

VOLUME 3

ORD ER FORM

Agenda for Research on Women’s Health for the 21st Century is a 6-volume report from four scientific meetings 

and public hearings to establish an agenda for women’s health research for the 21st century. Volume 1 contains the executive summary and volume 2 is a composite report containing recommendations from all four

meetings. Volume 3 contains public testimony from the Bethesda, Maryland meeting, and volumes 4, 5, and 6 are

reports and public testimony from the three regional meetings and public hearings. To order a single, free copy 

of each volume, please indicate which publication(s) you would like to receive.

 Volume 1 — Agenda for Research on Women’s Health for the 21st Century, A Report of the Task Force on the NIH

Women’s Health Research Agenda for the 21st Century, Executive Summary; NIH Publication No. 99-4385.

 Volume 2 — Agenda for Research on Women’s Health for the 21st Century, A Report of the Task Force on the NIH

Women’s Health Research Agenda for the 21st Century; NIH Publication No. 99-4386.

 Volume 3 — Agenda for Research on Women’s Health for the 21st Century, Public Testimony; Bethesda, Maryland:

November 1997; NIH Publication No. 99-4387.

 Volume 4 — Agenda for Research on Women’s Health for the 21st Century, Influences of Sex and Gender on Health;

Philadelphia Scientific Meeting and Public Hearing, September 1996; NIH Publication No. 99-4388.

 Volume 5 — Agenda for Research on Women’s Health for the 21st Century, Sex and Gender Perspectives for Women’s 

Health Research; New Orleans Scientific Meeting and Public Hearing, June 1997; NIH Publication No. 99-4389.

 Volume 6 — Agenda for Research on Women’s Health for the 21st Century, Differences Among Populations of

Women; Santa Fe, New Mexico, Scientific Meeting and Public Hearing, July 1997; NIH Publication No. 99-4390.

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