Scientific Workshop on

Lesbian Health 2000

Steps for

Implementing

the IOM Report

Department of Health and Human Services

Office on Women’s Health

National Institutes of Health

Office of Research on Women’s Health

Gay and Lesbian Medical Association (GLMA) and the

Lesbian Health Fund (LHF)
Organizing Sponsors

• Department of Health and Human Services, Office on Women’s

Health

• National Institutes of Health, Office of Research on Women’s

Health

• Gay and Lesbian Medical Association (GLMA) and the Lesbian

Health Fund (LHF)

Federal Co-Sponsors

• Agency for Healthcare Research and Quality (AHRQ)

• Centers for Disease Control and Prevention (CDC)

• Health Resources and Services Administration (HRSA)

• Substance Abuse and Mental Health Services Administration

(SAMHSA)

Private Sector Co-Sponsors

• American Medical Women’s Association

• Center for Lesbian Health Research at the Center of Health and

Aging, University of California at San Francisco

• Center for Lesbian, Gay, Bisexual, and Transgender Health at

Columbia University’s Joseph L. Mailman School of Public

Health

• Fenway Community Health Center

• Human Rights Campaign (HRC)

• Lesbian, Gay, Bisexual, and Transgender Public Health Workers

of the American Public Health Association

• Lyon-Martin Women’s Health Services

• National Gay and Lesbian Task Force

• Sexual Minority Youth Assistance League (SMYAL)

• The Mary-Helen Mautner Project for Lesbians with Canter

• Women’s Program Office and Lesbian, Gay, Bisexual Concerns

Office of the American Psychological Association
 i

TABLE OF CONTENTS

 Page

Executive Summary........................................................................ iii

IOM Recommendations Considered by Each Working Group...........viii

Planning Committee Members .........................................................ix

Preparation of the Report ................................................................. x

1. Cancer Working Group............................................................. 1-1

2. Cardiovascular Disease and Obesity Working Group.................. 2-1

3. Health Promotion and Intervention Working Group.................... 3-1

4. HIV/AIDS and Sexually Transmitted Diseases Working Group ..... 4-1

5. Life Span Development Working Group.................................... 5-1

6. Mental Health and Substance Abuse Working Group.................. 6-1

7. Research Career Development Working Group .......................... 7-1

8. Research Methodology Working Group..................................... 8-1

9. Resiliency/Health Effects of Homophobia Working Group ......... 9-1

10. Service Delivery and Access to Care Working Group ..............10-1

Appendix 1: Agenda .................................................................... A-1

Appendix 2: Table of Recommendations ....................................... A-7

Appendix 3: About the Speakers and Working Group Chairs ...........A-13

Appendix 4: List of Acronyms.....................................................A-29
1 - ii
iii

EXECUTIVE SUMMARY

During the last decade, scientific interest in lesbian health has risen,

in parallel to the national focus on women’s health in general. The

impetus for this attention came about in the early 1990s when the

national media focused on the potentially higher risk for breast cancer

in the lesbian population. In addition, the National Lesbian Health

Advocacy meetings with Federal agencies in 1993 led to the initiation

of many activities within the Department of Health and Human

Services. The inclusion of questions on sexual behavior and identity

in the Federally funded Women’s Health Initiative and the Nurses

Health Study was a major step for lesbian health during this decade.

The supplemental funding provided by the NIH Office of Research on

Women’s Health to study the lesbian population was instrumental in

stimulating research projects.

Among nongovernmental organizations, the funding of small research

grants by the Lesbian Health Fund of the Gay and Lesbian Medical

Association, totaling about $250,000 this decade, established valuable

pilot data for larger research projects. Several medical organizations

passed resolutions for the inclusion of or protection of persons by

sexual orientation. Scientific articles on lesbian health have also

appeared in several peer-reviewed medical and public health journals

in recent years.

In 1999, the Institute of Medicine published its landmark report,

Lesbian Health: Current Assessment and Directions for the Future.

NIH’s ORWH and CDC’s Office of Women’s Health led the effort to

support this first-of-a-kind study. The recommendations were broad

and overarching. The IOM report was well received according to

IOM representatives, with more than 5,000 copies distributed to

health care professionals and government officials nationwide. Given

the challenge in implementing the recommendations, the Gay and
iv

Lesbian Medical Association invited the DHHS Office on Women’s

Health and ORWH to co-sponsor a workshop to identify the next

steps needed to implement the IOM recommendations. Several other

government agencies joined in sponsoring this workshop, as well as

several lesbian, gay, bisexual, and transgender organizations and

health professional organizations. We want to especially thank these

groups for their support and participation in this important workshop.

On March 23-24, 2000, over 100 lesbian health experts, and government and foundation representatives met at the Scientific

Workshop on Lesbian Health in Washington, D.C. (Appendix 1).

Representatives from the National Center for Health Statistics and the

Substance Abuse and Mental Health Services Administration

provided valuable and new information on the inclusion of questions

on sexual identity and behavior in the National Health and Nutrition

Examination Survey and the National Household Survey on Drug

Abuse, respectively. Lesbian health experts enlightened the

workshop participants on the history of the lesbian health movement,

as well as the CDC-funded “Removing the Barriers Project” that

provides culturally appropriate training for health care providers. A

video, Lesbian Physicians: Practice, Patients, and Power revealed

the barriers lesbians face in receiving quality health care.

Representatives from the gay community who prepared the White

Paper for Healthy People 2010 presented the science base to justify

the inclusion of sexual orientation in the tracking of dozens of

Healthy People objectives.

Participants spent most of the workshop in one of ten working groups

on the following topics: Cancer, Cardiovascular Disease and Obesity,

Health Promotion and Intervention, HIV/AIDS and STDs, Life Span

Development, Mental Health and Substance Abuse, Research Career

Development, Research Methodology, Resiliency/Health Effects of
v

Homophobia, and Service Delivery and Access to Services. Each

working group was asked to consider several research questions that

were raised by the IOM report, which are included in each section of

this report, as well as the eight general recommendations from the

IOM Report (see page viii). Each working group was charged with

producing at least five implementation steps. Specific activities

suggested by each working group provide a rich menu of programs

for Federal and private organizations to choose from for future

support. They range from activities that require minimal financial

support to activities that require more substantial long-term funding.

A summary of the most frequently recommended steps for implementation from the Working Groups is shown in Appendix 2. Two

recommendations were endorsed by all ten working groups: 1) The

Federal government should solicit and fund research on lesbian, gay,

bisexual, and transgendered health; and 2) Research should include

the diversity of the lesbian population in terms such as race/ethnicity,

socioeconomic status, age, disability, and geography. The justification for these recommendations was apparent after a search for

currently funded grants or contracts on lesbian health in DHHS

revealed very few funded projects. Lesbian health researchers were

encouraged to submit sound scientific proposals to Federal health

agencies to be considered for funding. Eight of the working groups

suggested the continuance of scientific workshops or professional

meetings on lesbian health, and asked that such conferences be

supported at regular intervals. Seven of the working groups

suggested steps be taken to improve access to the health care system,

such as funding studies to explore the causes for barriers that lesbians

have in accessing health care, treatment, information, and preventive

services. Along the same lines, seven working groups recommended

that cultural competency/sensitivity training be provided for health
vi

care providers and researchers. The CDC-funded “Removing the

Barriers Project” was suggested as a model in this regard.

Seven working groups also called for the inclusion of sexual orientation for analysis in federally funded research. The National

Health Interview Survey, the Youth Risk Behavior Survey, the

National Health and Nutrition Examination Survey, plus several

ongoing disease-specific surveys were mentioned for inclusion of

questions on sexual orientation and/or for oversampling the lesbian,

gay, bisexual, and transgendered population. The invited experts

were surprised to learn that several federally funded health surveys

have or currently collect information on sexual orientation. Over half

(six) of the working groups called for the funding of research to

determine the appropriate methodology for studies conducted on the

lesbian population.

The creation of liaison positions in relevant DHHS agencies collected

information clearinghouses for lesbian, gay, bisexual, and transgender

research was recommended by working groups (six). In July, 2000

DHHS created the Steering Committee on Disparities Related to

Sexual Orientation, which includes representatives from most of the

DHHS agencies and offices. This committee has been asked to

develop a strategic plan for the DHHS by the end of the year. Special

studies on the impact of discrimination, stigma, and homophobia on

mental and physical health was also called for by half of the working

groups. In all, 70 steps for implementing the IOM report were

suggested by the expert working groups. These recommendations

will be considered in developing the strategic plan for the department.

Another positive event that has occurred since the Scientific

Workshop on lesbian health is the announcement that Healthy People

2010 will include sexual orientation as a population group for
vii

tracking in almost 30 objectives. A Healthy People Companion

document had also been commissioned to highlight lesbian, gay,

bisexual, and transgendered health as related to the national objectives.

The process of implementing the IOM report on lesbian health has

now begun. Researchers and others inside and outside government

are invited to use the proceedings of this workshop to ensure that

lesbian health needs are more fully addressed in research proposals.

Likewise, members of the lesbian community are encouraged to

participate in these unique research opportunities. Integrating these

workshop recommendations into continuing or new health research

efforts should yield significant progress by the end of the decade in

addressing issues raised by the IOM report.

Wanda K. Jones, Dr.P.H.

Deputy Assistant Secretary for Health (Women’s Health), DHHS

Maureen O’Leary, M.I.M.

Executive Director

Gay and Lesbian Medical Association

Vivian Pinn, M.D.

Associate Director for Research on Women’s Health, NIH
viii

IOM RECOMMENDATIONS CONSIDERED

BY EACH WORKING GROUP

• Increase knowledge of health risks and protective factors,

improve data-gathering methodologies for gathering information

about lesbian health, increase understanding of the diversity of the

lesbian population, and improve access to health care services.

• Improve measurement of the various dimensions of lesbian sexual

orientation.

• Include questions about sexual orientation on data collection

forms in relevant studies in the behavioral and biomedical

sciences.

• Consider the full range of racial, ethnic, and socioeconomic

diversity among lesbians in study design; include study

population members in development and conduct of research; and

protect the confidentiality and privacy of the study population.

• Fund a large-scale probability survey to determine the range of

expression of sexual orientation among women and the

prevalence of various risk and protective factors for health by

sexual orientation.

• Convene regular conferences to disseminate information re: the

conduct and results of lesbian health research, including the

protection of human subjects.

• Develop and support mechanisms for Federal agencies,,

foundations, health professional associations, and academia to

disseminate information on lesbian health to health care

providers, researchers, and the public.

• Develop strategies to train pre- and post-doctoral researchers in

conducting lesbian health research.
ix

PLANNING COMMITTEE MEMBERS

Chair

Suzanne Haynes, Ph.D.

Office on Women’s Health

Department of Health and Human Services

Washington, DC

Coordinator

Jennifer Pittman

Lesbian Health Fund

Gay and Lesbian Medical Association

San Francisco, CA

Donna Brogan, Ph.D.

Department of Biostatistics

Rollins School of Public Health

Emory University

Atlanta, GA

Joyce Hunter, D.S.W.

Community Liaison Programs

HIV Center for Clinical and Behavioral Studies, NYSPI

New York, NY

Patricia Dunn, M.S.W., J.D.

Gay and Lesbian Medical Association

Public Policy Division

459 Fulton Street, Suite 107

San Francisco, CA

Kate O’Hanlan, M.D.

Gynecologic Oncology, Surgery, and Endoscopy

Stanford Medical Center

Portola Valley, CA

Patricia Robertson, M.D.

Department of Obstetrics, Gynecology, and Reproductive Sciences

University of California at San Francisco

San Francisco, CA
x

PREPARATION OF THE REPORT

The Scientific Workshop on Lesbian Health was a success largely

due to the countless hours given by the 10 Working Group Chairs

and the Planning Committee, comprised of members of the

Lesbian Health Fund, the Gay and Lesbian Medical Association,

and Federal representatives.

Likewise, the hard work of the more than 100 experts and leaders

in lesbian health from LBGT organizations, health care

organizations, academia, foundations, and HHS agencies is

reflected in this report. Judith Grant and Lynn Peniston of the

MayaTech Corporation should be thanked for their excellent

logistical support at the conference. Finally, Matthews Media

Group should be acknowledged for their timely preparation and

editing of the recommendations.

Editor

Suzanne G. Haynes, Ph.D., HHS Office on Women's Health,

Washington, D.C.

Technical Editors

Suzanne Niemeyer, Matthews Media Group, Rockville, MD

Patrick Nolan, Matthews Media Group, Rockville, MD

Deborah Steinbach, MayaTech Corporation, Silver Spring, MD
1-1

1. Cancer Working Group

IOM Report: Key Points

“Much attention has been paid to possible increased risk of

cancer among lesbians, particularly with respect to breast

cancer. The assumption of higher risk for lesbians is based

primarily on data from various studies suggesting that certain cancer risk factors occur at higher levels or with

greater frequency in lesbians. These factors include higher

rates of smoking, alcohol use, poor diet, greater BMI, and

differential rates of hormone exposure associated with less

use of oral contraceptives and the lower likelihood of

bearing children. To date, however, there are no epidemiological studies supporting a conclusion that lesbians are at

increased risk for breast or other cancers.

“There are several reasons for studying cancer among lesbians. For example, compared to heterosexual women, lesbians may have differences in risk factors, differences in

prevalence of risk factors for each of the cancers, and differences in the way that health care is received (e.g., how

they relate to their health care provider, how the provider

relates to them).”

IOM Suggested Areas for Research

• Population-based studies to determine the incidence of cancer

among lesbians

• Prevalence of cancer risk factors among lesbians (e.g., hormone replacement therapy use, diet, overweight, alcohol use,

and tobacco use)
1-2

• Patterns of screening behaviors among lesbians (e.g., mammograms, Pap smears)

• Possibilities for adding sexual orientation items to cancer and

SEER registries

• Need for prevention and treatment intervention models targeted

specifically toward lesbians.

 Reprinted with permission from Institute

of Medicine, Lesbian Health: Current

Assessment and Directions for the Future

(Institute of Medicine, 1999, pp. 64-65,

86-87)

Cancer Working Group Recommendations

1. Federally funded data systems should include sexual orientation measures. Specifically:

• NHIS should use both sexual orientation questions and

sexual behavior questions for stratifying survey results.

• NHANES should oversample lesbians, as is currently done

for African Americans and Hispanics.

• CDC’s BRFSS should ask questions about sexual orientation and behavior as they relate to cancer risk factors and

utilization of screening.

• CDC’s YRBS should add sexual orientation/behavior as an

analytical category.

2. Other ways of including sexual orientation in federally funded

studies should be explored. Specifically:

• CDC’s National Breast and Cervical Cancer Early Detection Program should fund a feasibility study to assess collection of data regarding sexual orientation and behavior.
1-3

• Measures should be taken to determine the feasibility (e.g.,

by oversampling or by other methodology) of collecting

data on sexual minorities from the CDC cancer registry and

the NCI SEER registry.

3. Federal agencies should adopt policies that are inclusive of

sexual minorities. Specifically:

• ORWH should develop a package describing measures

of sexual orientation/behavior. This material should be

distributed to all NCI and other cancer investigators performing research on human subjects.

• All SEER special studies should be required to measure

and report data stratified by sexual orientation/behavior.

• Sexual minority status should be incorporated in the list of

“special populations” or “medically underserved” persons

as defined by the Office of Special Populations Research at

NCI.

• “NIH Guidelines for Inclusion of Women and Minorities as

Subjects in Clinical Research” should be amended to include sexual minority status.

• Federal funding in clinical settings should be made contingent on completion of cultural competence training. This

training should be modeled on the CDC-funded Mautner

project “Removing the Barriers” for all personnel in contact

with patients.

4. Relevant agencies should issue a call for “better than the best”

statistical methodology in studies utilizing Federal funding

mechanisms (e.g., RFPs, RO1 grants) addressing multiple social, biological, behavioral, and cancer risk factors stratified by
1-4

orientation/ behavior, degree of public disclosure, age of parity,

and gender role/appearance/identity. Data should also track:

• Nullparity

• Obesity

• Smoking

• Alcohol consumption

• Screening compliance

• Stress

• Social support

• Diet

• Environment

• Occupational exposure

• High-risk sex with men

• Number of partners

• Exercise

• Medications

• Family history/genetics

• DES exposure

• Oral contraceptive use history

• Events related to stigmatization, such as violence, verbal

harassment, discrimination

5. Relevant agencies should issue a call for “better than the best”

statistical methodology in federally funded studies to evaluate

predictors of screening utilization rates for mammograms, Pap

smears, fecal occult blood tests, sigmoidoscopy, and clinical

breast exams. These studies should be stratified by sexual orientation/behavior with special emphasis on:

• Stressors regarding screening

• Financial access to screening

• Fear of provider

• Anticipatory fear of homophobia

• Distrust of medical institutions

• Providers’ information/cultural competence
1-5

• Gender role/appearance/identity

• Body self-concept emphasis

6. Funds should be made available for a special study that stratifies data in cancer registries by orientation/behavior based on

measures of time from diagnosis to treatment, and on stage,

type of treatment (including complementary), and other treatment variables for breast, colon, cervical, lung, and ovarian

cancers.

7. Mechanisms should be created to improve training for educators, researchers, and students. Specifically:

• In order to reduce barriers and improve access to health

care for sexual minority patients, agencies should fund pilot

studies on cultural competence training for students and

health care providers.

• This meeting (Scientific Workshop on Lesbian Health)

should be convened every two years to assess progress.

• Relevant agencies should devise methods to cement implementation of recommendations prior to administrative

turnover.

8. Healthy People 2010 should include sexual orientation/ behavior. Specifically, Healthy People 2010 should contain:

• Calculated death rates from cancers stratified by sexual minority status (cite “DNC” where data not counted).

• Measures of sexual orientation and behavior in data collection efforts relevant to cancer prevention, including Pap

smears, colorectal screening, and mammograms (objectives

3-11, 3-12, and 3-13).
1-6

• Specific reference to lesbian/bisexual women in the stated

goals of Healthy People 2010. Examples include Objective

27-1, reduce tobacco use by adults; Objective 27-2, reduce

tobacco use by adolescents; Objective 27-5, increase

smoking cessation attempts by adult smokers; and Objective 27-7, increase smoking cessation attempts by adolescent smokers.

Participants

Chair

Kate O’Hanlan, M.D.

Gynecologic Oncology, Surgery And Endoscopy

Portola Valley, CA

Mary Alpaugh, Ph.D.

Department of Pathology

University of California at Los Angeles, School of Medicine

Los Angeles, CA

Deborah Bowen, Ph.D.

Fred Hutchinson Cancer Research Center

Cancer Prevention Research Program

Seattle, WA

Kevin Brady, M.P.H.

Division of Cancer Prevention and Control

Centers for Disease Control and Prevention

Atlanta, GA

Stacey Hart, Ph.D.

Center for Lesbian Health Research

University of California, San Francisco

Stanford, CA
1-7

Susan Hester, M.P.A.

The Mary-Helen Mautner Project for Lesbians with Cancer

Washington, DC

Mhel Kavanaugh-Lynch, M.D., M.P.H.

Office of the President

University of California

Oakland, CA

Anna Levy, M.S.

Senior Program Analyst for Women’s Health

NCI Office of Women’s Health

Office of Science Planning and Assessment

National Cancer Institute

Bethesda, MD

Linda McGehee, Ph.D., R.N.

School of Nursing

Georgia State University

Atlanta, GA

Lorna Rodriguez-Rodriguez, M.D., Ph.D.

Director of Gynecologic Oncology

University of Rochester

Rochester, NY

Sabrina Sojourner

Director of Training for the Mautner Project

Sojourner and Associates

Washington, DC

Lisa Weissmann, M.D.

President, Lesbian Health Fund

Vice-President, Gay and Lesbian Medical Association

Watertown, MA
1-8
2-1

2. Cardiovascular Disease and

Obesity Working Group

IOM Report: Key Points

“There are no population-based data on cardiovascular disease among lesbians or on the factors that increase their

risk for cardiovascular disease. There is some evidence

that lesbians may have higher rates of smoking and higher

BMI, two risk factors for cardiovascular disease. On the

other hand, lesbians are less likely to use oral contraceptives, which may lower their risk for cardiovascular disease. Based on currently available data, the committee

concludes that it is not possible to determine whether lesbians are indeed at higher risk for cardiovascular disease than

women in general.”

IOM Suggested Areas for Research

• Population-based studies to determine incidence of cardiovascular diseases among lesbians

• Prevalence of risk factors for cardiovascular diseases among

lesbians (including tobacco use, diet, overweight, hypertension,

diabetes, and cholesterol), as well as prevalence of physical

activity and hypertension and cholesterol screening

• Dietary patterns of lesbians and prevalence of overweight and

eating disorders

• Use of oral contraceptives and hormone replacement therapy

among lesbians
2-2

• Prevalence of cigarette smoking among lesbians and patterns of

tobacco use

• Studies of interventions that work for lesbians

 Reprinted with permission from Institute

of Medicine, Lesbian Health: Current

Assessment and Directions for the Future

(Institute of Medicine, 1999, pp. 68, 85-

87)

Cardiovascular Disease and Obesity Working Group

Recommendations

1. Sexual orientation should be added as an analytical category to

federally funded research. Specifically:

• Sexual orientation should be added to existing large-scale

studies, including the Framingham Heart Study, SWAN,

Black Women’s Health Survey, and the National Health

Interview Survey.

• All new NIH applicants should be required to address sexual orientation as part of the “diversity rule.”

• A standard “significant other” question(s) should be distributed to federally funded primary investigators.

2. Relevant Federal agencies should take measures to advance

education and awareness within the research infrastructure.

Toward this end:

• A program should be implemented wherein project officers

and members of the Center for Scientific Review are
2-3

trained under a system used by the Director’s Office for

previous diversity rules.

• OPRR should create educational materials for IRBs.

• Institute-based workshops regarding scientific issues (e.g.,

new cardiovascular risk data) should held on a regular basis.

• The existing minority programs should provide supplemental training funds for lesbian/gay/bisexual awareness.

• Primary investigators should be trained in lesbian/ gay/ bisexual sample recruitment with particular emphasis on

community collaboration.

3. A broad study of lesbian and bisexual women’s health should

be funded and should use a probability or a multi-center small

area, cross-sectional research design (as opposed to the more

costly longitudinal study). Specifically, the survey should

evaluate:

• Smoking

• Body fat

• Hip/waist ratio

• Dual energy x-ray absorptiometry measures

• Diet

• Food frequency questions

• Physical activity assessment

• Glucose tolerance

• Blood profile lipids

• Other serum risk factors such as Homocysteine

• Mental health indicators

• Alcohol use

• Use of complementary and alternative medicine
2-4

• Socioeconomic status

• Determinants of key risk factors

This study should solicit support from community groups.

4. Federal funding mechanisms should be created to conduct a

two-stage risk factor intervention trial:

• Stage 1 will assess and tailor standard interventions based

on the following variables: a) attitudes toward focus groups

and past intervention experience; and b) the knowledge

base of women at risk for cardiovascular disease.

• Stage 2 will develop community-based demonstration projects that take into account multiple risk factor interventions.

5. Relevant Federal agencies should develop a comprehensive

lesbian community education initiative regarding cardiovascular risk factor awareness, screening recommendations, and related issues. This education program should:

• Target smoking cessation.

• Broaden the health agenda based on a possible substudy

that explores how lesbians get health information, and who

they hold credible as health advisors.

Participants

Chair

Susan Johnson, M.D., M.S.

Associate Dean for Faculty Affairs

University of Iowa College of Medicine

Iowa City, IA
2-5

Michelle Danielson, Ph.D.

Department of Epidemiology

Graduate School of Public Health

University of Pittsburgh

Pittsburgh, PA

Patrice Desvigne-Nickens, M.D.

National Heart, Lung and Blood Institute

National Institutes of Health

Bethesda, MD

Marcy Gross

Agency for Healthcare Research and Quality

Rockville, MD

Nina Markovic, Ph.D.

School of Dental Medicine

University of Pittsburgh

Pittsburgh, PA

Deborah Morton, Ph.D.

Department of Family and Preventive Medicine

University of California at San Diego

La Jolla, CA

Nancy Norman, M.D., M.P.H.

Director of Women’s Health

Fenway Community Health Center

Boston, MA

Julie Palmer, Sc.D.

Associate Professor of Epidemiology

Slone Epidemiology Unit

Boston University School of Public Health

Brookline, MA
2-6

Susan Roberts, D.N.Sc.

School of Nursing

Northeastern University

Lexington, MA

Andrea Solarz, Ph.D.

Consultant

Arlington, VA

Valerie Ulstad, M.D., M.P.H., M.PA., F.A.C.C.

Minneapolis Heart Institute

Clinical Associate Professor of Medicine

University of Minnesota Medical School

Shakopee, MN
3-1

3. Health Promotion and

Intervention Working Group

IOM Report: Key Points

“As for lesbian health research in general, information is

limited on the prevalence of particular health risk factors

among lesbians. The Women’s Health Initiative (WHI)

provides one useful source of data for looking at differences between lesbian and heterosexual women in the study

in terms of certain health-related risk variables.

“Data from the WHI indicate significant differences in

cigarette smoking status depending on sexual orientation.

Approximately twice as many lesbians were reported to be

heavy smokers compared to heterosexual women (6.8% of

lifetime lesbians and 7.4% of mature lesbians versus 3.5%

of heterosexual women).

“Body mass index (BMI), an indication of overweight, differed significantly between lifetime lesbians and heterosexual women in the WHI, with a greater proportion of lifetime lesbians having a BMI of more than 27 (52.3% of

lifetime lesbians compared to 45.8% of heterosexual

women).

“In the WHI sample, lesbians were much less likely to have

ever been pregnant than were heterosexual women. These

differences were particularly pronounced for lifetime lesbians of whom 34.1% had previously been pregnant, compared to 61.2% of the mature lesbians and 89.9% of the

heterosexual women.

“Not surprisingly, lifetime lesbians in the WHI sample

were least likely to report having used oral contraceptives

between the ages of 25 and 35 (only 16.7%). Approxi-
3-2

mately one-third of heterosexual women (32.0%) had used

oral contraceptives during this age period as had 42.4% of

mature lesbians.

“Alcohol use among lesbians is described in more detail in

a later section of this report dealing with mental health and

substance abuse.

“Finally, most studies of lesbians indicate that their experiences of childhood sexual abuse are about the same as

those of heterosexual women.”

IOM Suggested Areas for Research

• Efficacy of current smoking and breast cancer prevention

projects

• Etiology of substance use and abuse

• Risk and protective factors across the life span

• Involvement of lesbians in lesbian-centered community organizations and activities and their impact on lesbian health

• How to encourage lesbians in healthy behaviors and how to

bring them in for care

• Interventions specifically geared to prevent health risk

behaviors and events among lesbian adolescents (e.g.,

STDs, cigarette smoking, substance abuse)

 Reprinted with permission from Institute

of Medicine, Lesbian Health: Current

Assessment and Directions for the Future.

Copyright 1999 by the National Academy

of Sciences. Courtesy of the National

Academy Press, Washington, D.C., pp.

55,57-58, 85-87)
3-3

Health Promotion and Intervention Working Group

Recommendations

1. Sexual orientation should be added to all RFAs and RFPs targeted for minority populations or women’s health funding.

Toward this end, agencies should:

• Supplement this directive with diversity training toolkits

for government program staff as necessary.

• Establish an Office of Lesbian and Gay Health. This office

will be responsible for 1) enforcing culturally-competent

guidelines; 2) ensuring that reviewers are aware of the

guidelines; and 3) designing appropriate research questions

concerning sexual orientation.

2. Research should evaluate a model lesbian-focused smoking

cessation program, comparing it to a conventional smoking

cessation program.

3. A comparative analysis should be conducted of “ask the nurse”

Internet chat rooms versus chat rooms designed specifically to

address the health concerns of lesbian, gay, bisexual, and

transgender youth. Comparisons should include coverage of

the following topics: alcohol, drugs, teen pregnancy, smoking,

HIV, STDs, and sexual assault.

4. Agencies should develop and evaluate lesbian health curricula

modeled on the Kaiser Program for medical schools, nursing

schools, and public health programs.

5. Health care provider sensitivity training modeled after the

Mautner Project and Rankow/ Rimer programs should be provided.
3-4

6. Interventions should be furnished to practicing health care providers; they should be modeled after the California State Breast

and Cervical Cancer Screening Program.

7. An evaluation should be performed of the effectiveness of

community-based lesbian organizations compared to well established women’s health or gay organizations (with a lesbian

liaison). The study should compare the effectiveness of the respective programs in terms of recruiting lesbians, and especially lesbian women of color, for services such as alcohol

treatment and Pap smear screening.

8. Healthy People 2010 should include lesbian/ bisexual women.

Specifically, the Healthy People objectives should address the

following issues as they relate to lesbian and bisexual women:

• High school graduation rates

• Homelessness

• Use of breast cancer screening

• Internet access to health care sites

• Level of physical exercise

• Health care providers’ attitudes

• Alcohol consumption and abuse over the course of the life

span

Participants

Chair

Suzanne Haynes, Ph.D.

Office on Women’s Health

Department of Health and Human Services

Washington, DC

Deborah Aaron, Ph.D.

Department of Epidemiology

University of Pittsburgh

Pittsburgh, PA
3-5

Teresa Cuadra, M.D.

Phillips Family Practice

Beth Israel Medical Center

New York, NY

Loretta Finnegan, M.D.

Office of Research on Women’s Health

National Institutes of Health

Bethesda, MD

Yvonne Green, R.N., M.S.N., C.N.M.

Office on Women’s Health

Centers for Disease Control and Prevention

Atlanta, GA

Elisabeth Gruskin, Dr.P.H.

Division of Research

Kaiser Permanente

Oakland, CA

Catherine Hancock, A.B.

Sexual Minority Youth Assistance League

Washington, D.C.

Audrey Koh, M.D.

Department of Obstetrics and Gynecology

California Pacific Medical Center

San Francisco, CA

Diane Ruth Lauver, Ph.D., R.N., C.S.

School of Nursing

University of Wisconsin Madison

Madison, WI

Alicia Matthews, Ph.D.

Department of Psychiatry

University of Chicago

Chicago, IL

Susan Messina, M.S.S., M.L.S.P.

American Association of Health Plans

Washington, DC
3-6

Stephanie Roberts, M.D.

Lyon-Martin Women’s Health

San Francisco, CA

Kathleen Somers, M.P.H., M.A.

Division of Adolescent and School Health

Centers for Disease Control and Prevention

Atlanta, GA

Greer Sullivan, M.D., M.S.P.H.

Centers for Mental Health Research

University of Arkansas for Medical Sciences

North Little Rock, AR
4-1

4. HIV/AIDS and Sexually

Transmitted Diseases

Working Group

IOM Report: Key Points

“Although it is well known that women can acquire STDs

from male sex partners, the risk of STD transmission between female partners is unclear. Guidelines for safe sex

for lesbians are lacking. Attempts to use national or local

surveillance data to estimate the risk of STD transmission

between women are limited by the fact that many risk classifications schemes have either excluded same-gender sex

among women or subsumed it under a hierarchy of other

behaviors viewed as higher risk. Moreover, few if any state

or local STD reporting systems routinely collect and analyze information on same-sex behavior among women.

Nonetheless, lesbians are often perceived to be at very

minimal risk for STD... .

“The prevalence of HIV infection among women who have

sex with women (WSW) is unknown owing to the methodological barriers in attaining representative samples of

these women and the lack of HIV research studies targeting

these populations. The few studies of WSW that assess

HIV seroprevalence provide differing estimates of HIV infection rates, possibly attributable to the type of WSW

populations sampled. Most studies, however, suggest

higher HIV seroprevalence among WSW compared to exclusively heterosexual women... .

“HIV-related research on WSW, regardless of sexual orientation, has been scarce yet notable for its unexpected

findings:

• Higher HIV seroprevalence rates among women who

have sex with both women and men (i.e., behaviorally
4-2

bisexual women) compared to their exclusively homosexual or heterosexual counterparts;

• High levels of risk for HIV infection through unprotected sex with men and through injection drug use; and

• Risk for HIV infection of unknown magnitude owing to

unprotected sex with women and artificial insemination

with unscreened semen.”

 Reprinted with permission from Institute

of Medicine, Lesbian Health: Current

Assessment and Directions for the Future

(Institute of Medicine, 1999, pp. 71,

75-76, 86-87).

IOM Suggested Areas for Research

• Mechanisms operating to increase HIV risk among injection drug-using women who have sex with women

• Research on the risk networks of injection drug-using

women who have sex with women

• High-risk sexual and injection behaviors among women

who have sex with women

• Risks of STDs (including HIV) transmission through

female-to-female sex

• Measurements of sexual partnerships and sexual networks (including HIV status of male sex partners)

• Prevalence of bacterial vaginosis among women who

have sex with women
4-3

• Sexual histories of lesbians, including history of sexual

contact with men

• Prevalence of infections related to injection drug use,

such as hepatitis B and C

NOTE ABOUT TERMINOLOGY: In this chapter, the terminology mirrors that

of the IOM Lesbian Health report in that we use “women who have sex with

women” in the context of STDs. The purpose of this term is to include those

women who don’t self-identify as lesbian or bisexual but who are potentially at

risk for female-to-female transmission of STDs.

HIV/AIDS and Sexually Transmitted Diseases Working

GroupRecommendations

1. To supplement multi-city IDU cohorts, HIV research should

examine women who have sex with women and use injection

drugs. To improve the quality of the research, these studies should:

• Oversample women who inject drugs and have sex with

women

• Include supplemental questions

• Provide assistance in interpreting results

2. Since the risk of female-to-female transmission of STDs is not

well known, Federal funding should be made available for

studies that quantify and characterize female-to-female sexual

risk of:

• HIV, by expanding sites in the existing CDC study

• Hepatitis B and C

• Herpes virus

• Syphilis

• Bacterial Vaginosis

• Gonorrhea
4-4

• Human papilloma virus (HPV)

• Chlamydia

• Other STDs

3. Because the CDC HIV/ AIDS surveillance hierarchy may underestimate female-to-female transmission and HIV infection

in women who have sex with women, a review and evaluation

of the CDC HIV/ AIDS surveillance system should be conducted. Specifically, this evaluation should:

• Followup on reports with missing risk data

• Analyze data from states and cities that have added sexual

orientation to their surveillance form

4. Since sexual identity and behavior questions are not included

on many large behavioral surveys, Federal programs should direct funds to, and provide technical support for, adding sexual

identity and behavior questions to:

• YRBS

• SAMHSA’s National Household Survey of Drug Abuse

• BRFSS

• Other surveys

5. Appropriate agencies should fund targeted population studies

that are inclusive of all age and socio-demographic groups.

These studies should be designed to define when and how

women who have sex with women are at risk for STDs and

HIV.

6. Since HIV-positive women who have sex with women may

encounter unique barriers to prevention and care services, Federal programs should:

• Use data from existing studies to identify patterns of utilization and barriers to accessing prevention and care services.
4-5

• Include questions in new studies of HIV-positive women

that address prevention and care issues for women who

have sex with women.

• Fund studies and interventions to address barriers unique to

women who have sex with women.

• Fund studies to determine effectiveness of barrier methods

for preventing woman-to-woman transmission of HIV, and

to examine porosity and compliance/ behavior in utilizing

the barrier method.

Participants

Chair

Susan Chu, Ph.D., M.S.P.H.

National Immunization Program

Centers for Disease Control and Prevention

Atlanta, GA

Patricia Case, M.P.H., Sc.D.

Department of Social Medicine

Harvard Medical School

Boston, MA

Samuel Friedman, Ph.D.

National Development and Research Institute

New York, NY

Donna Futterman, M.D.

Adolescent AIDS Program

Montefiore Medical Center

Bronx, NY

Cynthia Gomez, Ph.D.

Centers for AIDS Prevention Studies (CAPS)

University of California, San Francisco

San Francisco, CA
4-6

Joyce Hunter, D.S.W.

HIV Center for Clinical and Behavioral Studies, NYSPI

New York, NY

Margaret Johnston, Ph.D.

Division of AIDS, NIAID

National Institutes of Health

Bethesda, MD

Amy V. Kindrick, M.D., M.P.H.

Lyon-Martin Women’s Health Services

University of California, San Francisco

San Francisco, CA

A.D. McNaghten, Ph.D., M.H.S.A.

Council of State and Territorial Epidemiologists

Centers for Disease Control and Prevention

Atlanta, GA

Janet Moore, Ph.D.

Division of HIV/AIDS

Centers for Disease Control and Prevention

Atlanta, GA

Angela Powell-Young, M.P.H.

HIV/AIDS Bureau

Health Resources

Silver Spring, MD

Rebecca Young, Ph.D.

National Development and Research Institutes, Inc.

New York, NY
5-1

5. Life Span Development Working

Group

IOM Report: Key Points

“Very little information is available about specific developmental issues that might emerge in childhood for lesbians. There is a larger although still limited research base

on homosexuality in adolescents. Little of this work, however, has focused exclusively on lesbians. Further, systematic longitudinal studies of development and adjustments

are lacking. Finally, earlier research, particularly that

which focused on pathological behavior, may be of less

relevance to understanding the well-being of contemporary

lesbian adolescents given the contextual changes in society

that have acted to increase the visibility of homosexuality

and the availability of support systems for lesbian and gay

youth.

“Many of the developmental issues that adult lesbians face

are the same as those faced by other women: entering the

workforce, finding a loving partner and developing a satisfying sexual life, deciding whether to have children, being

a parent, negotiating the aging process with its attendant

declines in health and, for some, the death of a life partner.

Little information is available, however, about how lesbians face these challenges through adulthood or about the

unique challenges they may face. For example, there is a

dearth of research on the practice and meaning of sexuality

for lesbians throughout their life course. There is evidence

that most lesbians have been heterosexually active, and this

complicates retrospective and prospective analyses.

“Deciding whether or not to have children is an important

and sometimes difficult issue for all women whether lesbian or heterosexual. In addition to all the usual parenting
5-2

issues, lesbian parents must cope with the very real fear

that they will lose their children in custody battles and other

legal situations. Nonetheless, lesbians are increasingly

choosing to become parents, often through donor insemination, but also through adoption and foster care.”

IOM Suggested Areas for Research

• Process of coming out and what constitutes a psychologically healthy coming out

• Factors that help/hinder development of healthy self-esteem

in lesbian adolescents

• Development of lesbian sexual identity

• Specific physical and mental health concerns of lesbians as

they age, from childhood to old age

• Childbearing patterns of lesbians

• Development of sexual orientation

• Lesbian motherhood, including studies of children born

into or adopted by lesbian-parented families

 Reprinted with permission from Institute

of Medicine, Lesbian Health: Current

Assessment and Directions for the Future

(Institute of Medicine, 1999, pp. 50,

52-53, 85-86).
5-3

Life Span Development Working Group

Recommendations

1. Definitions of lesbian sexual orientation should reflect the lesbian experience in terms of identity, attraction, behavior, and

affiliation.

• NCHS, through its Cognitive Lab, should develop valid and

reliable measures of sexual orientation across the life span.

• ORWH should issue an RFA, in collaboration with other

institutes (e.g., NICHD and NIMH), to fund in-depth

qualitative studies of sexual orientation development in diverse groups of lesbians (for example, in terms of race, ethnicity, class, and geographic area) across the life span.

These studies should explore variations over time and

across the life span, taking into consideration cultural and

ethnic diversity, as well as proven techniques developed in

other clinical and research areas.

2. Federal funding should be provided for studies (an RFA for

longitudinal studies and a PA for qualitative studies) to examine the physical and mental health and life course effects of

gender atypicality in childhood and adolescence across the life

span (e.g., violence and suicide).

3. NICHD and NIMH should develop PAs for longitudinal studies of lesbian child-rearing, including decision-making, insemination, conception, birth, pre-school, and adulthood.

4. NICHD and NIMH should fund qualitative studies of lesbian

family definition and structure, with sensitivity to multicultural

issues.

5. Funding should be provided for longitudinal studies of lesbians

over the age of 50, focusing on issues of mental health, physical health, insurance, workplace, retirement, access to care,
5-4

housing (including nursing homes), discrimination, and social

support systems.

• NIMH and NIA should fund qualitative studies to explore

and define the concept of successful aging in lesbians.

• Questions on sexual orientation should be added to existing

longitudinal studies of aging (e.g., the Baltimore study).

• The National Institute of Nursing Research should provide

funding for research on lesbian caregiving.

• AHRQ should fund a study on access to health insurance,

health care, and health outcomes for lesbians.

• Sexual orientation should be included on the National

Medical Expenditure Survey.

• Support should be given for a conference on health and

mental health research related to lesbian aging.

• Information on sexual orientation should be included in

disease registries and on death certificates.

6. Federal funding should be provided (RFAs, PAs by NIMH) to

conduct in-depth studies on identity development and management across the life course. Researchers should focus on all

aspects of identity development and management, including

multiple stigmatized identities (e.g., in terms of sexual

orientation, race, ethnicity, disability, and socioeconomic

status).

7. DHHS should fund a clearinghouse to provide technical assistance on lesbian health research design, including access to archive datasets and shared information on lesbian health research. Furthermore, DHHS should:
5-5

• Provide training on lesbian health issues to the CSR study

sections.

• Conduct seminars for grant applicants through CSR in order to encourage submissions and provide guidance on preparing research proposals on lesbian health issues. These

efforts should be in conjunction with large professional

meetings (e.g., APHA and APA) in different regions of the

country.

8. Funding should be provided for an RFA or PA to: 1) examine

the physical and mental health impact of anti-gay violence and

family-related violence across the life span (e.g., schools to

nursing homes) through NIMH, NIDA, and NIAAA; and

2) evaluate the amount of resources for victims of gay familyrelated violence. Specifically:

• NCVS and NSFV should include a question on sexual orientation.

• NIA and NICHD should fund studies (RFA or PA) on discrimination and anti-gay violence toward older lesbians and

adolescents.

• NIMH should fund a workshop for researchers on the role

of stigmatization and anti-gay violence on health and mental health.

Participants

Chair

Caitlin Ryan, M.S.W., A.C.S.W.

Human Sexuality Studies Program

San Francisco State University

Washington, DC
5-6

Angela Pattatucci Aragon, Ph.D.

AIDS and AIDS Related Research

Center for Scientific Review

National Institutes of Health

Bethesda, MD

Sandra Butler, Ph.D.

School of Social Work

University of Maine

Orono, ME

Jeanine Cogan, Ph.D.

Consultant for Research, Policy and Action

Washington, DC

Anthony D’Augelli, Ph.D.

Penn State University

University Park, PA

Sharon Deevey, R.N., Ph.D.

Patient Care Medical Services

Columbus, OH

Nanette Gartrell, M.D.

Lesbian Family Study

San Francisco, CA

Margaret Schneider, Ph.D.

Ontario Institute for Studies in Education

University of Toronto

Toronto, Ontario, Canada

Randall L. Sell, Sc.D.

Center for Lesbian, Gay, Bisexual and Transgender Health

Columbia University

New York, NY

Jennifer Taylor, B.A.

Office on Women’s Health

Department of Health and Human Services

Washington, DC
6-1

6. Mental Health and Substance

Abuse Working Group

IOM Report: Key Points

“Very little is known about the prevalence and incidence of

depression, anxiety disorders, psychotic disorders, dissociative disorders, and personality disorders in lesbians. In

general, studies have not found differences in the psychological adjustment of nonclinical samples of lesbians and

other women. Although there is, in general, no reason to

expect that most major mental illnesses occur more or less

often in lesbians than in heterosexual women, except perhaps owing to the experience of discrimination, not enough

information is available to draw definitive conclusions.

“Data on the use of alcohol among lesbians are not available from population-based samples or large-scale epidemiological studies focusing on alcohol use, although this

area has received some research attention. Nonetheless, reviews of lesbian health research consistently include alcohol abuse as a problem for which lesbians appear to be at

greater risk than heterosexual women, and alcohol abuse

has been widely viewed as a prevalent and serious problem

among lesbians.

“Data across a wide range of non-probability small-sample

studies suggest that about 30% of lesbians may have alcohol problems. However, this estimate may be inflated since

these studies have generally had a number of methodological problems, including the fact that subjects have often

been recruited using convenience sampling from settings in

which alcohol consumption is likely to occur (e.g., bars).

Further, it has been suggested that contemporary patterns of

alcohol use among lesbians may be lower because bars

have become a less important component of the lesbian cul-
6-2

ture as other options for social gathering have become increasingly available.”

IOM Suggested Areas for Research

• Prevalence of mental disorders among lesbians, including

major depression

• Relationships between lesbians and their family members

and their influences on mental health

• Impact of multiple minority statuses on the formation of

lesbian identity and on mental health

• Normative mental health for lesbians across the life span

• Relationship between suicide and sexual orientation, particularly during adolescence

• Utilization of mental health services

• Impact of violence and other hate crimes on the lives of

lesbians

• Effectiveness of various therapeutic approaches with lesbians

• Associations between childhood sexual abuse and substance abuse, including alcohol abuse

• Etiology of substance use and abuse (including alcohol)

among lesbians
6-3

• Prevalence of heavy drug use and injection drug use among

lesbians

 Reprinted with permission from Institute

of Medicine: Lesbian Health: Current

Assessment and Directions for the Future

(Institute of Medicine, 1999, pp. 69,

79-80, 88-87).

Mental Health and Substance Abuse Working Group

Recommendations

1. Federal agencies funding research and administering health

programs should make a sustained effort to clearly communicate that concerns relevant to lesbian health are within the

mainstream of science and public health efforts and thus within

the primary mission of these agencies. In order to facilitate the

acceptance of lesbian health research into the mainstream, Federal agencies should:

• Issue RFAs and PAs on lesbian MH/SA research.

• Include reference to lesbian MH/SA research in other relevant RFAs/PAs and in the descriptions of standing funding

programs.

• Include coverage of lesbian MH/SA research in all relevant

NIH workshops and conferences.

• Sponsor conferences and publications on cross-cutting issues, bringing together a variety of scientific and policy

perspectives.

• Designate particular program officials within each relevant

agency component as responsible for promoting lesbian

MH/SA research.
6-4

2. Given that the emerging science in lesbian MH/SA has documented higher than expected rates of functional and dysfunctional substance use and possibly greater prevalence of some

mental disorders, an integrated approach to comorbidity issues

in this population should be taken. Furthermore, in recognition

of the scientifically known concurrence of MH/SA disorders

and physical illness, this approach should include the development of integrated models for lesbian health research and

service delivery.

3. Given that scientific evidence consistently documents both differential patterns of mental and physical health care utilization

and the problems faced by lesbians in accessing culturally

competent care, funding should be provided for research specifically focused on outcome issues in this population. In this

regard, both prevention and treatment approaches to ameliorate

the negative effects of bias and multiple stigmas are needed,

including research on issues related to efficacy and effectiveness of interventions at multiple levels, including the individual, workplace, school, and community settings.

4. Support should be provided for research on those positive factors in individuals and communities that will enhance our understanding of how to improve lesbians’ health and mental

health status. To that end, support is needed for multiple research strategies that include both qualitative and quantitative

methodologies at the individual and community levels.

5. In recognition of the diversity of the lesbian population on

multiple dimensions (including identity, age, ethnic/ racial

background, and social class), and to enhance the representatives and cultural competence of lesbian mental health and substance abuse research, guidelines should be developed for initiating and maintaining mutually beneficial collaborations between researchers and communities (both individuals and organizations).
6-5

6. Given the currently small pool of skilled researchers in the area

of lesbian MH/SA, NIH and other relevant Federal agencies

should solicit grant proposals for training and early career development, particularly in the areas of:

• Multi-institutional research and training consortia (on the

model of the successful NIMH family research consortia)

• Conferences and short-term training programs on targeted

research areas with high potential for progress

• Mentored and independent career development awards

Participants

Chair

Susan Cochran, Ph.D., M.S.

Department of Epidemiology

University of California at Los Angeles School of Public Health

Los Angeles, CA

Mary Blehar, Ph.D.

Women’s Mental Health Program

National Institute of Mental Health

Bethesda, MD

Laura Brown, Ph.D.

Independent Practice

Seattle, WA

Deborah Bybee, Ph.D.

Department of Psychology

Michigan State University

Williamston, MI
6-6

Joanne DiPlacido, Ph.D.

Department of Psychology

Central Connecticut State University

New Britain, CT

Jacqueline Gentry, Ph.D.

Public Interest Initiatives

American Psychological Association

Washington, DC

Ellen Haller, M.D.

Department of Psychiatry

University of California, San Francisco

San Francisco, CA

Marjorie Hill, Ph.D.

New York State Workers’ Compensation Board

Brooklyn, NY

Tonda Hughes, Ph.D.

College of Nursing

University of Illinois, Chicago

Chicago, IL

Nancy Kennedy, Dr., P.H.

Center for Substance Abuse Prevention

Substance Abuse and Mental Health Services Administration

Rockville, MD

Howard S. Kurtzman, Ph.D.

Cognitive Science Program

National Institute of Mental Health

Bethesda, MD

Delores Parron, Ph.D.

Office of Planning and Evaluation

Department of Health and Human Services

Washington, DC
6-7

Janice Ristock, Ph.D.

Women’s Studies Program

University of Manitoba at Winnipeg

Winnipeg, Manitoba, Canada

Lindsay Rossano, M.P.H.

The Joseph L. Mailman School of Public Health

Columbia University

New York, NY
6-8
7-1

7. Research Career Development

Working Group

IOM Report: Key Points

“For numerous reasons, researchers in academic and other

settings (e.g., independent research institutes, clinical research centers, community research organizations) have

been reluctant to initiate research on lesbian health. Many

of the historical barriers continue to affect what research is

done, how it is perceived, what kinds of resources are made

available, and the personal and professional impact on

those who conduct lesbian research.

“The committee identified several factors that have acted to

inhibit the conduct of research on lesbians. As has already

been noted, some of the reluctance to conduct research in

this area arises because of the difficult methodological

challenges that researchers face in designing and implementing sound studies of lesbians (e.g., because lesbians

have been a hidden population, finding a diverse and representative sample can be extremely difficult). There are

numerous other barriers, including the potential negative

effects on academic careers of working with a stigmatized

population, the lack of mentors for conducing research in

this area, and the lack of funding.”

IOM Suggested Areas for Research

• Need for training

• Faculty support at the assistant, associate, and professor levels

• How to increase the number of lesbian PIs and co-PIs on grants
7-2

• Working with heterosexual researchers and PIs

• How to get lesbian women through the “double glass ceiling”

• How to obtain funding to design and fund programs for lesbian

health research

• Develop ways to support lesbian health researchers in obtaining and utilizing already established lesbian health funding

• Career patterns and workplace experiences

 Reprinted with permission from Institute

of Medicine: Lesbian Health: Current

Assessment and Directions for the Future

(Institute of Medicine, 1999, pp. 85,

135-144).

Research Career Development Working Group

Recommendations

1. A Lesbian Health Research Consortium should be developed.

Specifically:

• The RFA for the consortium should include clinical,

community, and research organizations. The consortia

should: a) develop a mechanism to increase available study

populations, give studies more statistical significance and

scientific “validity,” and provide for community grounding;

b) create measures to increase participation of lesbians in

clinical trials; and c) develop policy.

• An annual lesbian health research conference should supplement the national lesbian health research consortium.
7-3

2. Measures should be adopted to improve institutional accountability. Specifically:

• OWH should issue an annual report on lesbian health.

• A specific staff person at OWH should be dedicated to lesbian health.

• DHHS should implement a systemwide inclusion of lesbian

health research in Healthy People 2010 (see Objective

23-4).

• Lesbian health and research should be included in the programs of professional health organizations and academic

accrediting organizations (e.g., Liaison Committee on

Medical Education, National Library of Medicine, American Association of Critical Care Nurses, and Council on

Education for Public Schools).

• ORWH should conduct and evaluate training for scientific

review administrators and Institute Center (IC) staff to raise

awareness of the IOM report findings.

3. An RFA for a lesbian health research Web site should be issued. The site should enhance the research environment, and

should include:

• Bibliographies

• List of researchers and mentors in lesbian health

• List of qualified reviewers

• Technical assistance in grant writing

• Information on funding sources

• List of existing/available databases

• Descriptions of research-in-progress

• List of training opportunities
7-4

4. Measures should be taken to promote an agency-wide increase

and improvement in information-gathering resources. Specifically, this agency-wide effort should:

• Use existing databases that include information on sexual

orientation/behavior (e.g., NHANES, NHIS).

• Expand all federally funded large population-based surveys

to include dimensions of sexual orientation.

• Collaborate with other investigators to encourage the inclusion of questions about sexual orientation.

• Provide supplemental funding for special studies (e.g.,

SEER).

• Fund a longitudinal lesbian health cohort study.

• Conduct a 20 year observational study modeled on the

Framingham Heart Study to evaluate the prevalence/ incidence of health risks and health outcomes.

• Develop a valid definition of “lesbian.”

• Ensure that participants are ethnically, racially, and economically diverse.

5. Improvements should be made in the recruitment and retention

of faculty. Specifically, there should be mechanisms to:

• Train deans and department heads in lesbian cultural competency.

• Encourage visiting professorships.

• Establish lesbian health research fellowships.
7-5

• Add lesbian health research as a priority area in women’s

health training grants (e.g., Building Interdisciplinary Research Careers in Women’s Health).

Participants

Chair

Alice Dan, Ph.D.

Director

National Center of Excellence in Women’s Health

University of Illinois at Chicago

Chicago, IL

Catherine Acuff, Ph.D.

Center for Mental Health Services

Substance Abuse and Mental Health Services Administration

Rockville, MD

Barbara Brookmyer, M.D., M.P.H.

Special Assistant

Health Resources and Services Administration

Department of Health and Human Services

Rockville, MD

Michael Brown, M.P.H.

Health Scientist

Office on Women’s Health

Centers for Disease Control and Prevention

Atlanta, GA

Alison Diamant, M.D., M.S.H.S.

Division of General Internal Medicine and Health Services

Research

University of California at Los Angeles

Los Angeles, CA
7-6

Ngina Lythcott, Dr.P.H.

Associate Dean

The Joseph L. Mailman School of Public Health

Columbia University

New York, NY

Patricia Robertson, M.D.

Department of Obstetrics, Gynecology and Reproductive Sciences

University of California at San Francisco

San Francisco, CA

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

National Center of Excellence in Women’s Health

University of Wisconsin

Madison, WI

Deborah Stewart, M.D.

Medical Education Program

University of California San Francisco Fresno

Fresno, CA

Kathleen Stine, M.S.N., A.R.N.P.

Seattle Commission for Sexual Minorities

University of Washington

Seattle, WA

Joan H. Waitkevicz, M.D., F.A.C.P.

Gay Women’s Focus

Beth Israel Medical Center

New York, NY

Leslie Wolfe, Ph.D.

Center for Women Policy Studies

Washington, DC
8-1

8. Research Methodology Working

Group

IOM Report: Key Points

“Conducting research on lesbian health presents numerous

challenges because lesbians represent a subgroup of women

for which standard definitions of the population are lacking

and lesbians are not readily identifiable. These challenges

are further compounded because many in the lesbian community distrust research and researchers and there has been

little funding support for conducting research on lesbian

health topics. It is not surprising then, that methodologically rigorous large-scale studies are lacking in this area.

Furthermore, a number of methodological challenges for

comparing findings across studies are consistently found in

lesbian health research.

“Studies have not been consistent in how they define a lesbian sexual orientation, with some focusing on sexual behavior and others focusing on identity or desire. Also,

“studies of lesbian health have lacked standard measures of

sexual orientation including its three components behavior, identity, and attraction or desire which makes comparisons among studies difficult. Most lesbian health

studies have relied on non-probability samples. However,

few studies have allowed direct comparisons between lesbians and other subgroups of women by using the same

sampling strategies to identify subjects across sexual orientations and including measures of sexual orientation.

Most existing studies portray cross sections of experience

at one point in time, rather than development over time.”
8-2

IOM Suggested Areas for Research

• Need or lack of need for definitions of lesbian, lesbian behavior, and woman-woman sexual/affective behavior

• Need for and usefulness of measures for definition and examination of lesbians in varying contexts and research environments

• Cognitive research needed to determine proper questions for

use with lesbians i.e. highly closeted lesbians who are difficult

to reach for study, including cognitive laboratory testing,

audio-CASI, and other techniques

• Confidentiality issues

• Study design issues

• Measurement of sexual partnerships and sexual network

 Reprinted with permission from Institute

of Medicine, Lesbian Health: Current

Assessment and Directions for the Future

(Institute of Medicine, 1999, pp. 97-130).

Research Methodology Working Group

Recommendations

1. Where scientifically appropriate, sexual orientation should be

measured in all federally funded studies, and lesbians should be

included in all federally funded studies of women. All DHHS

agencies and institutes will receive these recommendations and

develop a plan to be implemented beginning FY 2002. DHHS

includes NIH, HRSA, SAMHSA, and CDC (including NCHS).
8-3

2. Methods for measuring sexual orientation should be improved.

Toward this end, researchers and relevant Federal agencies

should:

• Conduct cognitive tests to identify and develop “best

practice” methods (for question wording and modality) for

collecting data on sexual orientation/ identity, attraction/ desire, partner gender, and reference periods. Priority survey

techniques should include in-home paper self-administered

questionnaires with an interviewer, audio-CASI, telephone

CASI, and individual mail surveys. Other techniques

should include household mail surveys; CATI (randomdigit dial, listed); CAPI or paper interview; and Web-based

surveys.

• Evaluate the advantages and disadvantages of each method

and technique based on age, education, geography, socioeconomic status, race and ethnicity, and “outness” as part

of the cognitive testing.

• Conduct a randomized trial of these survey techniques to

compare their validity and reliability, including response/

participation rates.

3. Federal funding should be provided for a wide range of

qualitative and quantitative studies that include a number of

designs shown in Table 1 and Table 2 (pp. 8-7 and 8-8).

Survey designs should address:

• How to design the best cohort. For example, survey designs should explore ways to identify sufficient numbers of

lesbians and sufficient numbers of subgroups of particular

interest (e.g., based on race/ethnicity, age, and nonurban location).

• The inclusion of sexual orientation in Federal surveys,

including survey-specific implementation and language

recommendations
8-4

• Measures to strengthen statistical analysis in 3-generation

studies

• Analysis of existing datasets (including cross-sectional

surveys)

• Inclusion of hard-to-reach populations in each study design

4. Special methodological studies should be conducted to assess

appropriate research designs for studies of lesbian and bisexual

women. Specifically, relevant Federal agencies should:

• Convene a workshop to explore changes in methods and

study designs that will enhance lesbian health research.

• Conduct a feasibility study of the inclusion of appropriate

sexual orientation measures (after testing through cognitive

studies) in Federally funded health surveys. Include

attention to operations issues, such as reducing the fragmentation of Federal efforts, and maximizing interagency

resources and capacity.

• Fund secondary analysis of existing datasets, including

cross-sectional surveys with probability and nonprobability

samples.

• Fund exploratory research on sampling low-prevalence

populations with specific attention to methods for identifying groups such as rural lesbians and highly closeted lesbians.

• Fund an exploratory study to identify ways to recruit a cohort that secures sufficient numbers of lesbians and subgroups of interest (e.g., race/ ethnicity, age, and nonurban

residence).

• Fund a subsequent cohort study on lesbian health, including

a heterosexual comparison group.
8-5

• Fund research that explores new statistical analysis methods for 3-generation studies.

5. In view of the sensitive nature of the population, all research

should give special consideration to the issues of confidentiality and privacy. Specifically:

• The standard procedures for confidentiality and privacy

may not provide the protection needed for lesbians, both

because lesbians are a small population and because they

have a history of discrimination.

• OPRR needs to examine and review current procedures and

recommendations in order to ensure that research on

lesbians is appropriately protected and enhanced. Results

should be broadly disseminated by NIH scientific workshops and changes should be implemented by FY 2002.

Practices that should be considered to ensure confidentiality include handling of data, informed consent, data storage,

follow-up procedures, and data collection methods.

Participants

Chair

Judy Bradford, Ph.D.

Virginia Commonwealth University

Lesbian Health Research Institute Columbia University

Richmond, VA

Kay Anderson, Ph.D.

Office of Research on Women’s Health

National Institutes of Health

Bethesda, MD
8-6

Donna Brogan, Ph.D.

Department of Biostatistics

Rollins School of Public Health

Emory University

Atlanta, GA

Brad Edwards

American Statistical Association

Westat

Rockville, MD

Anke Ehrhardt, Ph.D.

HIV Center for Clinical and Behavioral Studies

New York State Psychiatric Institute

New York, NY

Vickie Mays, Ph.D.

Department of Psychology

University of California at Los Angeles

Los Angeles, CA

Esther Rothblum, Ph.D.

Institute for Research on Women and Gender

Stanford University

Stanford, CA

Stephanie Sanders, Ph.D.

The Kinsey Institute

Indiana University

Bloomington, IN

Catherine Simile, Ph.D.

National Center for Health Statistics

Hyattsville, MD

Donna Spiegelman, Sc.D.

Department of Epidemiology and Biostatistics

Harvard School of Public Health

Boston, MA

Frank Vitrano, M.S.

Planning, Research, and Evaluation Division

U.S. Bureau of the Census

Baltimore, MD
8-7

TABLE 1: QUANTITATIVE RESEARCH METHODS

Study Design

Suitable

Areas/Topics

Methodological

Issues Value-Added

Cohort studies Risks/incidence of

heart disease,

breast cancer,

lung cancer, depression, obesity,

diabetes in lesbians as compared

to heterosexual

women within the

same cohort

Also life change/

development issues

Selection method

Sample size

Comparisons: sisters, friends, or

heterosexuals

recruited using the

same sampling

strategy as lesbians

New cohort can be

built or existing

cohort can be

studied, pros for

both.

Most valuable

method for discussing differential

effects of and resistance to disease between

lesbians and heterosexuals

Longitudinal To study change in

effects in health

status over time in

relation to health

behaviors; can examine life events

within the lesbian

community (e.g.,

coming out, going

in, marriage, divorce, break up

with partner, death

of partner)

Pro: Smaller sample than cohort

study; can be only

lesbians

Con: Loss to followup challenge

If heterosexuals,

ensure that they

are comparable to

lesbians

Good for studying

life-change issues

Case control Same as prospective cohort

Pro: Cheap and

fast

Con: Recall bias;

bad for ‘rare exposure’ (such as lesbianism)

Some problems

solved by a variant

design which requires nonstandard statistical

analysis

Consensus: As

defined by the epidemiologic community, it is not

appropriate for

these research

questions

3-Generation Useful in looking at

family and developmental issues.

Pro: Very useful

for ethnic minority

communities

Con: statistics

problems

Researchers are

struggling with

analysis challenges

Might be very

useful in the future, after the

methodology is

strengthened
8-8

Study Design

Suitable

Areas/Topics

Methodological

Issues Value-Added

Randomized prevention/InterventionStudying the effectiveness of culturally appropriate

interventions in

studying risk factors

Pro: Efficacy can

be definitively established

Con: Intervention

may be less effective in practice

Loss to followup,

ensuring and

measuring compliance, developing

potentially successful lesbianspecific interventions

The only way to

develop and test

interventions

Cross-sectional 2 major types:

probability and

nonprobability

Nonprobability designs

Pro: Good for

measurement of

sexual partnerships and networks, good for

exploratory issues.

Community studies, cultural issues.

Con: Limited generalizability

Probability designs

Pro: generalizable

Con: expensive

Nonprobability

Building a sophisticated sampling

strategy

Probability

Challenges in

getting disclosure/question

design

Nonprobability

Can build a large

number of participants, inexpensive

TABLE 2: QUALITATIVE RESEARCH METHODS

Study Design Suitable Areas/Topics

Ethnographic Coming out process, human sexuality issues

Focus Groups Pretesting, variable development, language

development, propensity to respond

Case Analysis or Case

Series

Explore rare or underreported events (e.g.,

hate crimes)
9-1

9. Resiliency/Health Effects of

Homophobia Working Group

IOM Report: Key Points

“There is little information about the social norms of lesbians communities and how these norms might have an impact on health risk. Likewise, little information is available

about the risk or protective effects of lesbian relationships.

One factor hypothesized to play an important role in lesbian health is stress.

“Lesbians, similar to other stigmatized individuals, likely

experience stress related to the difficulties of living in a

homophobic society. Stress may result from the burden of

keeping one’s lesbian identity secret from family or coworkers, being excluded by physicians from making health

care decisions for a gravely ill lesbian partner or, among

many other factors, being the target of violence or other

hate crimes. Hostility and isolation are very potent forms

of stress that contribute to allostatic load by leading to elevated levels of the stress hormones. Although the precise

health effects of stress on lesbians have not yet been examined systematically, some hypotheses can be made about

their possible health risk based on information about both

the stress effects of discrimination on other groups and the

stress effects of socioeconomic status. It can be hypothesized that lesbians who experience such forms of psychosocial stress sustain negative effects similar to those of other

groups that experience discrimination.

“It can also be hypothesized that stress effects may be

greatest for lesbians who are subject to multiple forms of

discriminations, for example, lesbians who are also members of racial or ethnic minority groups. In addition to experiencing racism encountered by members of racial and
9-2

ethnic minority groups in general, minority lesbians can

also encounter racism in the lesbian community. Racism

may thus compound the negative effects that homophobia

potentially has on health. The combination of homophobia,

racism, and sex-based discrimination has been referred to

as being in triple jeopardy.

“A variety of factors can act to protect individuals from

negative outcomes, including a close relationship with a responsive and accepting parent, attachment to external support systems such as schools or churches, and having welldeveloped social support systems. Although research is

quite limited, some factors have been suggested to be protective of lesbian health. One of the suggested protective

factors is involvement in the lesbian community. Although

midlife lesbians responding to the NLHCS reported high

levels of stress, most reported that they relied on the lesbian

community and on lesbian and gay male friends for support

and socialization and reported overall satisfaction with their

lives.”

IOM Suggested Areas for Research

• Impact of homophobia, prejudice, and discrimination on physical/

mental health relative to expressed, inherent, or internalized

homophobia

• Protective factors across the life span— coping and

resiliency factors

• Reduction of homophobia in research and researchers in

this area

• Stress effects of various aspects of homophobia and their

influence on health
9-3

• Lesbian social support networks

• Sources of stress for lesbians and the impact of stress on

their physical and mental health

 Reprinted with permission from Institute

of Medicine, Lesbian Health: Current

Assessment and Directions for the Future

(Institute of Medicine, 1999, pp. 59-61,

63,85-86,135-140).

Resiliency/Health Effects of Homophobia Working

Group Recommendations

1. A broad conceptual framework should be developed. This

framework will inform and instruct all research.

2. A life-span framework should be developed. Specifically,

relevant Federal agencies should:

• Develop a cultural framework that includes ethnicity, race,

and socioeconomic status.

• Establish flexible ways to identify lesbians (e.g., identity,

behavior, orientation, and desire).

3. Funding should be granted to increase knowledge of health risk

and protective factors. Specifically, funding should support:

• Studies of the effects of homophobia, heterosexism, sexual

prejudice, and related issues on lesbian physical and mental

health.

• Studies of the effect of disclosure (coming out or not) on

the physical and mental health of lesbians, particularly disclosure to health care providers. Studies could include, but
9-4

are not limited to, those modeled on Landrine and

Klonoff’s study of how sexism affects women’s health.

• Studies of physiological markers of stress.

• Research on the causes of homophobia.

• Research on the impact of discriminatory public policy and

legislation on lesbians’ physical and mental health (e.g.,

impact of military policy on lesbian service members and

impact of the Defense of Marriage Act).

• Studies of the effect of the direct and indirect violence on

lesbian, bisexual, and transgender individuals’ physical and

mental health.

4. Measures should be taken to decrease homophobia on the part

of research and researchers in order to improve data gathering

methodologies.

5. Measures should be taken to overcome barriers to obtaining

accurate data and representative sampling. Specifically, relevant Federal agencies should:

• Require that material on sexual orientation issues be included in training programs.

• Create linkages between researchers and people in the

communities that are being studied.

6. There should be a concerted effort to improve access to health

care services, and to understand the effects of various aspects

of homophobia and their influence on physical and mental

health. Toward that end, relevant Federal agencies should:

• Conduct research on management of sexual identity

throughout the life span.
9-5

• Conduct research to determine the relationship between societal and/or internalized homophobia and how women

who have sex with women identify their sexual orientation

and behavior.

• Determine the health consequences associated with how

women label their sexual orientation and behavior.

• Conduct research on the utilization of family and social

support networks.

• Determine the health consequences of being out or closeted. Specifically, we recommend a research agenda that:

a) determines the effects of coming out or not at different

developmental stages; b) provides a situational analysis of

when coming out is protective; and c) assesses the benefit/harm of “don’t ask, don’t tell” as a personal coping

strategy.

• Develop and support mechanisms for government, foundations, health professional associations, and academia to disseminate information on lesbian health to health care providers, researchers, and the public.

• Organize research conferences on critical issues such as: a)

the health effects of homophobia on older lesbians, and b)

the health effects of violence on adolescent lesbians, bisexuals, transgender individuals, and youth questioning

their sexuality.

7. Researchers should take measures to increase the knowledge of

health risks and protective factors. Specifically, researchers

should:

• Conduct studies on the structure and function of family life

among lesbians, including research on family of origin,
9-6

families of choice, family formation, and development of

family over time. Research topics might include: a) the relationship between families’ responses to sexual orientation

and future psychological resilience or vulnerability; and

b) research on the construction of kinship relations, including those with past partners.

• Conduct comparative studies in lesbian relationships and

heterosexual relationships.

• Determine the relationship of family broadly defined (for

example the multitude of family structures that are created

in the lesbian community) in terms of coping and resiliency versus risk throughout the life span. Examine how

the family serves as a protective factor and as a source of

stress across the life span.

8. Sexual orientation issues should be a required part of the curricula in all federally funded training programs for physical and

mental health care providers.

9. Policies/mechanisms should be adopted to increase knowledge

of health risks and protective factors, particularly in regard to

the impact on physical/ mental health of homophobia, prejudice, and discrimination relative to expressed inherent or internalized homophobia. Toward this end, we suggest training for

teachers, school counselors and school personnel in junior high

schools and high schools in sexual orientation issues and the

special vulnerabilities of adolescent lesbian, bisexual, and

transgender individuals.

10. Strategies should be developed to train providers to improve

access to health care services. Specifically, researchers should:

• Conduct assessment of existing interventions (e.g., curriculum development and sensitivity training) to evaluate

their effectiveness.
9-7

• Conduct high quality evaluation research on methods designed to decrease homophobia. Methods might include

video, sensitivity training, curricula, and intervention studies.

11. In order to understand the effects of health provider homophobia and its influence on lesbian health, researchers should conduct more studies on attitudes toward lesbian clients and consumers among a broad range of physical and mental health

providers.

Participants

Chair

Beverly Greene, Ph.D., A.B.P.P.

Department of Psychology

St. John’s University

Brooklyn, NY

Byllye Avery, M.Ed.

National Black Women’s Health Project

New York, NY

Patricia Dunn, M.S.W., J.D.

Gay and Lesbian Medical Association

San Francisco, CA

Oliva Espin, Ph.D.

Department of Women’s Studies

San Diego State University

San Diego, CA

Yvonne Owens Ferguson, M.P.H.

Office on Women’s Health

Department of Health and Human Services

Washington, DC
9-8

Tamar Gershon, M.D.

Department of Psychiatry

Stanford University Medical Center

San Francisco, CA

Marsha Martin, D.S.W.

Office of the Secretary

Department of Health and Human Services

Washington, DC

Kim I. Mills, B.A., M.A.

Human Rights Campaign

Washington, DC

Dee Mosbacher, M.D., Ph.D.

Psychiatric Consultant

President of Woman Vision

San Francisco, CA

Charollete Patterson, Ph.D.

Department of Psychology

University of Virginia

Charlottesville, VA

Urvashi Vaid, Esquire

National Gay and Lesbian Task Force

New York, NY
10-1

10. Service Delivery and Access to

Services Working Group

IOM Report: Key Points

“Lesbian health and risks to health can be examined in the

context of the health care system. In other words, there are

aspects of the health care system that act to reduce lesbian’s

access to services, thereby possibly increasing their risk of

health problems.

“Structural barriers that affect health care for lesbians included potential barriers presented by managed care systems and the fact that lesbians relationships are often not

afforded the same legal standing as heterosexual marriages.

“Although domestic partner benefits are now increasingly

available through some employers, most lesbians still do

not have the option of coverage under their partner’s health

insurance plan.

“Hospitals and health care providers do not always give the

partner of a lesbian patient, or the co-parent of a lesbian’s

child, the same rights to visit and to access information as

is provided to a heterosexual spouse.

“Since insurance coverage is the primary gateway to health

care in this country, lesbians are at a distinct disadvantage

relative to married heterosexual women because of the

common prohibition against spousal benefits for unmarried

partners. “Personal and cultural barriers that affect access

to care for lesbians include the lack of cultural competency

among health care providers, the fear of coming out to providers, and the lack of lesbian focus in preventive and other

health care.”
10-2

IOM Suggested Areas for Research

• Lesbians’ patterns of use of health care services

• Models of care that act to remove barriers of access to care for

lesbians

• Impact of managed care on quality of care for lesbians

• What constitutes a basic standard of care for lesbian health

• Whether cultural competency training of providers on the

needs of lesbians will increase sensitive delivery of health

care for lesbians

• Access to health insurance for lesbians

• Need for prevention and treatment intervention models targeted

specifically toward lesbians

• Barriers to care for lesbians, including adolescent lesbians

• Extent to which treatment facilities for alcohol and drug

problems provide adequate care for lesbian clients

 Reprinted with permission from Institute

of Medicine, Lesbian Health: Current

Assessment and Directions for the Future

(Institute of Medicine, 1999, pp. 37,

40-42, 86-87).
10-3

Service Delivery and Access to Services Working Group

Recommendations

1. In order to improve cultural competence, the Federal government in partnership with professional organizations and other

agencies already concerned with cultural competency in health

care should fund the expansion and evaluation of the efficacy

of the Mautner Project “Removing the Barriers” and similar

programs. Specifically:

• Within these partnerships, steps should be taken to develop,

test, and implement components and models for fostering

culturally competent systems of care through mechanisms

such as demonstration projects, RFPs, and funding priorities.

• Health care accrediting bodies such as the Joint Commission on Accreditation of Healthcare Organizations and the

National Committee on Quality Assurance should require

that delivery systems demonstrate cultural competence in

sexual orientation, gender, ethnicity, race, class, age, national origin and disability in training of personnel, policies, accessibility, and hiring.

• Professional licensure bodies should require the demonstration of cultural competence as a criterion for entry. A

minimum of 10% of items on entrance exams will test cultural competence.

2. Measures should be taken to remove the barriers imposed by

heterosexual bias. Whereas there should be ongoing efforts to

educate and sensitize as many providers and health care institutions as is possible through traditional, continuing education

and innovative methods, access to safe and competent care,

based on appropriate research, is of immediate concern. Efforts to define “lesbian” and to measure risks and problems in
10-4

health care delivery will require methodological inquiry and

long-term studies.

• A potentially more direct means of establishing what lesbians should have as a basic standard of relevant and culturally competent care might begin with the elimination of

heterosexual bias in research, provider education, and

health programming.

• To this end, all Federal level funding mechanisms for research, training, and health service projects should be

screened for heterosexual bias. This means that in addition

to the usual review for efficacy, significance, and quality,

grant proposals will have to meet additional criteria. It

would be incumbent upon the grant author to establish

these criteria and articulate them in the grant in much the

same way that criteria have been used to increase the salience and inclusion of women and children in research.

• The absence of heterosexual bias would be demonstrated

by the absence of the following assumptions (these are not

exclusive). It will not be assumed that a) persons are always in coupled relationships; b) women have access to

male partners’ income and resources; c) families are all

“traditional” or nuclear family structured; d) gender is a dichotomous feature; and e) reproductive health concerns are

primary. Forms and surveys will not demonstrate these biases.

3. It is projected that as heterosexual bias decreases, researchers

and providers will necessarily be faced with the need to innovate in order to accommodate the diversity of the many subpopulations of women, including lesbian, bisexual, and transgender women.

4. Further exploration of the access to health care and health insurance for lesbian, bisexual, and transgender women should
10-5

be taken by pursuing a national research project that addresses

lesbian access to health care, and is representative of marginalized lesbians, including lesbians of color, lesbians with disabilities, lesbians in prison, lesbians in alcohol or drug treatment, and working class lesbians. The focus of the research

should include:

• Prevalence of health insurance

• Source of health insurance (e.g., through employment, as a

dependent, governmental program, privately purchased)

• Income

• Incidence of failure to receive health care because of lack

of health insurance or money

• Other household members (children, partners) who lack

health insurance (due to situations such as main wage

earner lacking insurance or lack of a domestic partnership)

5. Support should be given to legislative actions that move in the

direction of universal access to health care wherein health care

is a right rather than a privilege for lesbians and for all individuals.

• To meet the goal, partnerships with other groups working

toward universal access will be necessary.

• Until the goal of universal access is achieved, we must reduce inequities in the existing system of employment-based

health coverage by lobbying for recognition of lesbian and

gay couples and families in the design of employment

benefit packages, and exploring the idea of equivalent

benefit substitutions for single individuals who opt against

dependent insurance coverage.
10-6

6. Funding should be made available for consumer education and

outreach programs. Specifically, funds should be allotted for:

• Research into how lesbian, bisexual, and transgender

women seek health-related information and what health information they need

• The creation of a dedicated support mechanism and funding

for the collection and centralization of lesbian health information

• The integration of lesbian-, bisexual-, and transgender-specific health information into general women’s health Web

sites and information systems

7. Funds should be allocated for contracts with informatics experts, marketing researchers, and other professionals to develop

a multi-purpose and complex lesbian health Web site. Possible

funding for the development of the Internet site could be part

of an educational grant through governmental or private

mechanism. It is acknowledged that many women do not have

complete Web access, but this project should provide access

for many women who in some regard meet criteria for being

“lesbian” (desire, behavior, or identity) and who are isolated

because they are rural, incarcerated, or young. The Web site

should fulfill the following purposes:

• Function in conjunction with NIH; CDC; SAMHSA; lesbian, bisexual, and transgender health associations, and private research foundations as a clearinghouse for establishing an emergent information resource relevant to lesbian

health issues (including demographic data, risks, protective

factors, and specific disease entities).

• Provide a peer-refereed on line journal for practice and

research-related articles about women who are lesbian, bisexual, or transgender.
10-7

• Develop an accessible consumer clearinghouse and on-line

forum that includes interaction with lesbian health experts

who can address questions, concerns of the lesbian, bisexual, and transgender public.

• Data collections methodology to survey hidden populations.

8. Research-supported strategies should be developed for disseminating health information to older, rural, incarcerated,

youth, and other underserved populations such as lesbians with

disabilities, lesbians of color, and lesbians with low literacy or

immigrant status.

9. Clear research priorities should be established. These priorities

should build on the notion that access to services depends on

an understanding of both provider and consumer experiences

and perceptions. Specifically, research should:

• Identify points of entry to care for lesbian, bisexual, and

transgender women that may include diverse sites not previously included in studies (e.g., prisons, jails, detox centers, outpatient clinics, community mental health centers,

nursing homes, and juvenile facilities).

• Identify existing disparities in care and the assumptions on

which they are based. These studies might follow the model

of the cardiac studies on gender, racial disparities in

treatment. For example, straight and gay persons might be

compared to assess the inclusiveness, appropriateness, and

quality of service provided based on sexual orientation differences. Specifically, the issue of frequency of Pap smears

and utilization of mental health could serve as benchmarks

for best care. It is acknowledged that further research is

needed to identify the salient health risks and appropriate

care for lesbians.
10-8

• Identify and document components and dynamics of provider-consumer interactions that produce positive and

negative health outcomes based on lesbian identification.

• Establish and support regional centers of excellence for

lesbian, bisexual, and transgender women’s health. Full

partners in these centers will include lesbian, bisexual, and

transgender woman consumers, local community organizations, local health agencies, and policymakers.

Participants

Chair

Joanne Hall, R.N., Ph.D., F.A.A.N.

College of Nursing

University of Tennessee, Knoxville

Knoxville, TN

Kathleen DeBold, B.S.

The Mary-Helen Mautner Project for Lesbians with Cancer

Washington, DC

Val Derlega, Ph.D.

Department of Psychology

Old Dominion University

Norfolk, VA

Sandra Dodge, C.N.P.

Indian Health Service

Department of Health and Human Services

Rockville, MD

Cheryl Fields, M.P.H.

The Mary-Helen Mautner Project for Lesbians with Cancer

Washington, DC
10-9

Betty B. Hambleton, B.S.

Health Resources and Services Administration

Department of Health and Human Services

Rockville, MD

Michelle Hoersch, M.S.

Office on Women’s Health

Department of Health and Human Services

Chicago, IL

Amber Hollibaugh

National Development and Research Institute

New York, NY

Pamela Jumper-Thurman, Ph.D.

Council Oak Training and Evaluation

Fort Collins, CO

Ana Oliveira

Gay Men’s Health Crisis, Inc.

New York, NY

Cheri Pies, M.S.W., Dr.P.H.

Family, Maternal and Child Health

Contra Costa Health Services

Martinez, CA

Emily Pitt, M.S.W.

Fenway Community Health Center

Boston, MA

Laurie Robinson, M.I.S.

Office on Women’s Health

Department of Health and Human Services

Boston, MA

Patricia Stevens, R.N., Ph.D.

University of Wisconsin Milwaukee

Mazomanie, WI
10-10
A-1

Appendix 1: Scientific Workshop on Lesbian Health

Program/Agenda

The Washington Monarch Hotel

Washington, D.C.

March 23-24, 2000

THURSDAY, MARCH 23, 2000

Wanda K. Jones, Dr.P.H.

Moderator

Office on Women’s Health

INTRODUCTORY REMARKS

9:00 a.m. - 9:15 a.m. Vivian Pinn, M.D.

Office of Research on Women’s

Health

9:15 a.m. - 9:30 a.m. Maureen S. O’Leary, M.I.M.

Gay and Lesbian Medical

Association

9:30 a.m. - 9:50 a.m. REVIEW OF IOM REPORT

Introduction By: Vivian Pinn,

M.D.

Charles Evans, M.D., Ph.D.

Institute of Medicine (IOM)

9:50 a.m. - 10:00 a.m. Questions and Answers
A-2

THURSDAY, MARCH 23, 2000 (cont.)

KEYNOTE SPEAKERS

10:00 a.m. - 10:15 a.m. Raynard S. Kington, M.D., Ph.D.

National Center for Health Statistics

The Experience of NCHS/CDC with

Sexual Orientation Survey

Questions

10:15 a.m. - 10:30 a.m. Ulonda B. Shamwell, M.S.W.

Substance Abuse and Mental Health

Services Administration

The 1996 National Household

Survey on Drug Abuse

Experience with Sexual

Orientation Items and Future

Plans

10:30 a.m. - 10:45 a.m. Randall L. Sell, Sc.D./Judy

Bradford, Ph.D.

Health Resources and Services

Administration

Implications of the HP2010

White Paper Funded by

HRSA

10:45 a.m. - 11:00 a.m. BREAK

Yvonne Green, R.N., M.S.N.,

C.N.M.3⁄4 Moderator

Associate Director for Women’s

Health

Centers for Disease Control and

Prevention
A-3

THURSDAY, MARCH 23, 2000 (cont.)

11:00 a.m. - 11:15 a.m. Kate O’Hanlan, M.D.

The Lesbian Health Movement: How

Far Have We Come and Where

Do We Need to Go?

11:15 a.m. - 11:45 a.m. Dee Mosbacher, M.D., Ph.D.

Video Presentation

Lesbian Physicians: Practice,

Patients, and Power

11:45 a.m. - 12:00 Noon Sabrina Sojourner

Sojourner and Associates

Director of Training for The Mautner

Project

“Removing the Barriers

Project/Mautner Project”

Funded by the Centers for

Disease Control and

Prevention

12:00 Noon - 12:15 p.m. Discussion of Keynote Speeches

12:15 p.m. - 1:15 p.m. LUNCH

1:15 p.m. - 1:30 p.m. INSTRUCTIONS FOR

WORKING GROUPS

Suzanne Haynes, Ph.D. (OWH)

1:30 p.m. - 5:30 p.m. WORK GROUP SESSIONS

Cancer

Kate O’Hanlan, M.D., Chair
A-4

THURSDAY, MARCH 23, 2000 (cont.)

Cardiovascular Diseases and Obesity

Susan Johnson, M.D., M.S.,

Chair

Health Promotion and Intervention

Suzanne Haynes, Ph.D.,

Chair

HIV/AIDS and STDs

Susan Chu, Ph.D., M.S.P.H.,

Chair

Life Span Development

Caitlin Ryan, M.S.W.,

A.C.S.W, Chair

Mental Health and Substance Abuse

Susan Cochran, Ph.D., M.S.,

Chair

Research Career Development

Alice Dan, Ph.D., Chair

Research Methodology

Judy Bradford, Ph.D., Chair

Resiliency/Health Effects of

Homophobia

Beverly Greene, Ph.D.,

 A.B.P.P., Chair

Service Delivery and Access to

Services

Joanne Hall, R.N., Ph.D.,

F.A.A.N., Chair
A-5

THURSDAY, MARCH 23, 2000 (cont.)

5:30 p.m. - 7:00 p.m. DINNER

7:00 p.m. WORK GROUPS RECONVENE

FRIDAY, MARCH 24, 2000

9:00 a.m. - 12:00 Noon WORK GROUP SESSIONS

(cont’d.)

12:00 Noon - 1:00 p.m. LUNCH

1:00 p.m. - 3:45 p.m. GENERAL SESSION Work

Groups’ Report

Suzanne Haynes, Ph.D.

Moderator (OWH)

3:45 p.m. - 4:00 p.m. CLOSING
A-6
A-7

Appendix 2: Table of IOM Recommendations Listed by

Two or More Working Groups

Recommendation

CancerCardiovascularHealth PromotionHIV/AIDSLife SpanMental HealthResearch CareerResearchMethodologyResiliency/HomophobiaService Delivery

Diversity studies

conduct research

4 4 4 4 4 4 4 4 4 4

Federally funded

research solicit

research on LGBT

health issues

4 4 4 4 4 4 4 4 4 4

Scientific workshops/professional meetings

support lesbian

health conferences at regular

intervals

4 4 4 4 4 4 4 4

Access and barriers to health care,

information, prevention, and treatment fund and

conduct studies to

explore access/

barriers

4 4 4 4 4 4 4

Cultural competence/ sensitivity

training encourage and require

sensitivity training

for health care

providers and

researchers

4 4 4 4 4 4 4
A8

Recommendation

CancerCardiovascularHealth PromotionHIV/AIDSLife SpanMental HealthResearch CareerResearchMethodologyResiliency/HomophobiaService Delivery

Sexual orientation include sexual orientation as

an analytical category in federally

funded research

4444444

Liaison create

liaison positions,

offices, and information clearinghouses for LGBT

research in relevant agencies

444444

Methodology

conduct research

to determine appropriate methodology for studies

of lesbian population

444444

Discrimination/

stigma/homophobia study impact

of discrimination

on mental and

physical health

44444

Community

encourage

researchers to

collaborate with

LGBT commu nity

4444

Datasets fund

studies using existing datasets

containing sexual

orientation information

4444
A9

Recommendation

CancerCardiovascularHealth PromotionHIV/AIDSLife SpanMental HealthResearch CareerResearchMethodologyResiliency/HomophobiaService Delivery

Sexual orientation define, or

broaden definitions to include,

behavior, identity,

attraction, affiliation; study identity

development

4444

Intervention

conduct studies to

determine appropriate intervention

strategies or to

measure the effectiveness of

existing programs

4444

Mental health

fund studies of

mental health

stratified by other

variables in the

lesbian population

4444

Alcohol consumption fund and

conduct stud ies to

measure alcohol

use/ abuse

444

Disclosure study

health effects of

“outness”

444
A-10

Recommendation

CancerCardiovascularHealth PromotionHIV/AIDSLife SpanMental HealthResearch CareerResearchMethodologyResiliency/HomophobiaService Delivery

Sexual minority

status include

sexual minority

status in programs/ measures/

mechanisms that

apply to minority

and underserved

populations

444

Smoking fund

studies of lesbian

smoking patterns

or support cessation programs

tailored to LGBT

women

444

Substance use/

abuse conduct

studies in the lesbian population

444

Violence study

impact of anti-gay

violence

444

Exercise study

rates of exercise

in lesbians in relation to health

444

Healthy People

2010 include

sexual orientation

444

Internet/Web

fund health-related sites for LBT

women, researchers, and health

care professionals

444
A-11

Recommendation

CancerCardiovascularHealth PromotionHIV/AIDSLife SpanMental HealthResearch CareerResearchMethodologyResiliency/HomophobiaService Delivery

NHIS include

sexual orientation

444

Aging and elderly

lesbians study

patterns of aging,

health risks, and

health responses

to aging

44

Cancer screening fund studies

of cancer screening use, availability, and awareness in LGBT

population

44

Consortia develop and fund

lesbian health

consortia

44

Curriculum develop lesbian

health curriculum

for medical

schools, nursing

schools, public

health programs

44

Diet study diet

compared to heterosexual counterparts and in relation to health

44

Obesity study

prevalence of obesity in lesbians,

and its relationship to health

44
A-12

Recommendation

CancerCardiovascularHealth PromotionHIV/AIDSLife SpanMental HealthResearch CareerResearchMethodologyResiliency/HomophobiaService Delivery

Over sampling

techniques encourage the use of

over sampling

techniques in survey research on

the lesbian population

44

YRBS include

questions about

sexual orientation

that examines

multiple variables

(ethnic, racial,

socioeconomic,

geographic, age,

etc.) stratified by

sexual orientation

44

Family study lesbian families, including construction of families

and child rearing

44

Insurance study

lesbian rates of

health insurance

coverage, domestic partner insurance, and uninsured

44

Mentor/training

programs establish mentoring and

training programs

for researchers

studying LGBT

populations

44
A-13

Appendix 3: About the Speakers and

Working Group Chairs

Judith Bradford, Ph.D.

Judith Bradford is Director of the Virginia Commonwealth University Survey and Evaluation Research Laboratory (SERL or the

“Lab”). The SERL conducts applied research for local, state, and

Federal government agencies, provides technical assistance to

public and nonprofit community organizations, and trains graduate

students in applied research methods. Dr. Bradford is a member of

the core faculty for the Ph.D. Program in Public Policy and

Administration (VCU Center for Public Policy), where she chairs

the health policy track, and of the clinical faculty in the

University’s Department of Preventive Medicine and Community

Health, Medical College of Virginia.

Judy is active in HIV service and applied research, having directed

more than 60 HIV research projects, primarily funded by the Centers for Disease Control and Prevention or the Health Resources

and Services Administration. Currently, she is Research and

Evaluation Director for the Virginia HIV Community Planning

Grant, funded by CDC.

Dr. Bradford has a significant interest in lesbian health research.

She served on the Institute of Medicine’s scientific panel studying

lesbian health research priorities and recently became a member of

an interdisciplinary group of Columbia University faculty who are

developing a Center for Lesbian, Gay, Bisexual and Transgender

Health within the Joseph L. Mailman School of Public Health.

Within the Center, Judy and three lesbian research colleagues are

creating an Institute for Lesbian Health Research and currently

working with an emerging coalition of public and private

organizations in NYC to determine and seek to address the health

concerns of lesbians of color. Most recently, the Center’s faculty

prepared a white paper on LGBT Health for presentation at the

current Healthy People 2010 conference.
A-14

Susan Y. Chu, Ph.D, M.S.P.H.

Dr. Susan Chu has been the Deputy Associate Director for Science,

National Immunization Program, Centers for Disease Control and

Prevention since 1997. In the late 1980’s, there was considerable

controversy in the research community concerning the relationship

between alcohol consumption and breast cancer. Using data from a

CDC multi-site study, Dr. Chu authored a paper which received

considerable scientific and media attention and helped focus

national attention on the research needs in this area. She continued

to build an expertise on breast cancer epidemiology and was

invited by Dr. Vincent De Vita, then Director of the National

Cancer Institute, to publish a book chapter for his breast cancer

textbook series. Her expertise was recognized again as a member

of the 1997 National Institutes of Health Consensus Panel evaluating the risks and benefits of mammography screening in women

40-49 years of age. Her most widely recognized contributions

have been in HIV/AIDS research. She has authored or co-authored

over 45 articles on HIV/AIDS during her six years in the

HIV/AIDS Surveillance Branch, CDC, and was frequently invited

to write book chapters in well-known AIDS texts. One of her early

papers, entitled, “Impact of the human immunodeficiency virus

epidemic on mortality among women 15-44 years of age, United

States,” received extensive media and political attention, and was

influential in increasing awareness of the growing problem of HIV

among women. This work was cited in a number of legislative reports, and was credited as playing a critical role in obtaining increased funding for HIV/AIDS research in women. By the time she

was promoted to Section Chief of Special Projects, Division of

HIV/AIDS, she was considered one of the primary experts at the

CDC on HIV/AIDS surveillance and on the epidemiology of

women and HIV. For her work in HIV/AIDS, she received the

Public Health Service Commendation Medal and a Special Service

Award.
A-15

Susan D. Cochran, Ph.D., M.S.

Susan D. Cochran, Ph.D., M.S., is a Professor of Epidemiology

and Statistics at the University of California, Los Angeles School

of Public Health where she is currently the Acting Chair of the Department of Epidemiology. Originally trained as a clinical psychologist, with a focus on behavioral medicine, her early work in

experimentally improving rates of medication compliance among

manic depressives is still widely cited. She is one of the early empirical researchers in the area of lesbian health, co-authoring her

first paper on lesbian relationships as a graduate student in 1978.

This early study of 127 lesbians demonstrated in the scientific literature that lesbians’ close relationships and community identification are coherently organized along themes of emotional attachment and autonomous strivings. This may seem obvious now, but

at the time, when lesbian relationships were viewed as either

pathological or caricatures of heterosexual relationships, the work

was considered transformational. As a graduate student, she received both the Mark Freedman Memorial Research Award and

the Evelyn Hooker Research Award. She was also the recipient of

a Scientist Development Award from the National Institute of

Mental Health on statistical methodology in HIV research. Cochran received a M.S. in epidemiology in 1993 from UCLA’s School

of Public Health. She has published more than 25 articles on the

health and mental health of lesbians and gay men. Her research

includes studies of mental and physical health concerns among

lesbians and gay men and methods of improving HIV prevention

among ethnic minority gay men. Another long-standing area of

research interest is women’s health where she attempts to integrate

an understanding of contextual factors into views of women’s preventive health strategies, particularly women of color. She has

published research studies on the risk of HIV infection in lesbians

and women who have sex with women in a special issue of

Women’s Health: Research on Gender, Behavior and Policy

(1996), studies on depression, alcohol use, disclosure rates to

health care providers, and is currently working on a large study

assessing cancer prevention in lesbians. She served as the
A-16

co-principal investigator for what still remains one of the largest

studies of African American lesbians in the United States. She is

currently the Principal Investigator of the Los Angeles County

Lesbian Health Care Study that is examining access to care, health

status, quality of services, and health-related behaviors and outcomes among lesbians. A second current focus of her work is

population-based estimation of health and mental health morbidity

among lesbians and gay men using data from national health surveys.

Dr. Cochran has been an American Cancer Society Postdoctoral

Fellow in gynecologic oncology at UCLA’s School of Medicine

and was formerly teaching faculty in the Family Medicine Department of the University of Southern California. She served on

the Board of the National Lesbian and Gay Health Association

(NLGHA), and was the Chair of the American Psychological Association’s Committee on Lesbian, Gay and Bisexual Concerns.

She received the President’s award from NLGHA for her leadership in gay and lesbian health and Distinguished Scientific Contributions Award from the American Psychological Association’s Society for the Psychological Study of Lesbian, Gay and Bisexual

Issues.

Alice J. Dan, Ph.D., M.A., B.A.

Dr. Alice J. Dan’s career at University of Illinois spans more than

twenty-five years. Since 1975, Dr. Dan has served as both Assistant and Associate Professor and currently Professor in the College

of Nursing and School of Public Health. In 1992, she was appointed Director of the Center for Research on Women and Gender at the University, a position she still holds along with her appointment as Director of the National Center of Excellence in

Women’s Health in 1998.

Dr. Dan’s research experience is as extensive and varied as her

years at the University of Chicago. She has served as co-investi-
A-17

gator of research on such projects as Physical Activity and Bone

Integrity in Middle-Aged Women, Heredity and Bone Density in

Black and White Mothers and Daughters, and Self-Care Responses

to Threats to Women’s Sexuality.

She has authored and co-authored over sixty articles since 1979

that have appeared in publications such as the Psychology of

Women Quarterly, the American Journal of Epidemiology and the

Western Journal of Nursing Research.

Charles H. Evans, Jr., M.D., Ph.D., F.A.A.M.A., F.A.A.S.

Charles H. Evans, Jr., M.D., Ph.D. is Senior Advisor, Biomedical

and Clinical Research at the Institute of Medicine of the National

Academies. He is a pediatrician and immunologist and holds the

rank of Captain in the U.S. Public Health Service retired with 27

years service as a medical scientist at the National Institutes of

Health in Bethesda, Maryland, where he was Chief of the Tumor

Biology Section at the National Cancer Institute from 1975-1997.

Dr. Evans research interests include carcinogenesis (the etiology of

cancer), the normal immune system defenses to the development of

cancer, and aerospace medicine. He is an author of more than 125

scientific articles and holds three U.S. patents. Dr. Evans is the

recipient of numerous scientific awards including the Outstanding

Service Medal from the U.S. Public Health Service and the Wellcome Medal and Prize. He is a Fellow of the American Association for the Advancement of Science, the American Institute of

Chemists, and a credentialed Fellow in Health Systems Administration of the American Academy of Medical Administrators. An

active advisor to community medicine and higher education,

Dr. Evans serves on the Board of Trustees of Suburban Hospital

Health System and on the College of Arts & Sciences Board of

Trustees at the University of Virginia.
A-18

Beverly Greene, Ph.D., A.B.P.P.

Beverly Greene, Ph.D., is a Professor of Psychology at St. John’s

University and a certified clinical psychologist. A Fellow of the

American Psychological Association, she is a Diplomat of the

American Board of Professional Psychology in Clinical Psychology. Dr. Greene serves as an editorial board member of numerous

scholarly journals. In addition to these duties, she has served as

founding co-editor of Psychological Perspectives on Lesbian, Gay

and Bisexual Issues (Sage), a series of annual publications sponsored by Division 44 of APA. She is the sole editor of the series’

third volume, Ethnic and Cultural Diversity Among Lesbians and

Gay Men, and co-editor of the recently published fifth volume:

Education, Research and Practice in Lesbian, Gay, Bisexual and

Transgendered Psychology: A Resource Manual. A recipient of

numerous national awards for distinguished professional contributions and publications, she is co-editor of the forthcoming Psychotherapy with African American Women: Innovations in Psycho

Dynamic Perspectives and Clinical Applications.

Joanne M. Hall, Ph.D.

Joanne M. Hall, R.N., Ph.D. is an Associate Professor of Nursing

at the University of Tennessee - Knoxville. Dr. Hall came to the

University in 1999. From 1994-1998, she was on the faculty of the

School of Nursing at the University of Wisconsin - Milwaukee.

Dr. Hall’s extensive research in HIV/AIDS and Lesbian Health

evolved during graduate and post graduate work at the University

of California - San Francisco, where she received her Ph.D. in

Nursing (1992), and the University of Iowa where she received her

Masters in Nursing (1982). Some of her most recent and relevant

research projects include: (1) HIV Risk Reduction for Lesbians

and Bisexual Women and (2) Lesbian’s Alcohol Recovery Post

Childhood Sexual Abuse.
A-19

Among the numerous honors she has received is the Gay and Lesbian Medical Association (GLMA) Achievement Award for Support of Human Rights and Service to the Lesbian Health Fund

(1998). She also received the New Investigator Award, University

of Wisconsin - Milwaukee School of Nursing (1996). She has

been a Fellow in the American Academy of Nursing since 1997.

Suzanne Haynes, Ph.D.

Dr. Haynes serves as Senior Advisor for Science in the Office on

Women’s Health in the Department of Health and Human

Services. In this position, she coordinates science initiatives for

the Office. For the eight years prior to her appointment, Dr.

Haynes was Chief of the Health Education Section of the National

Cancer Institute, where she launched several community breast

cancer screening programs, physician early detection intervention

programs, and dietary change and skin cancer prevention

programs. Trained as an epidemiologist, she has published 70

articles on women’s health, including papers on women and heart

disease, cholesterol levels, smoking, hypertension, diabetes, and

breast cancer screening. She has edited the book, How to Increase

Breast Cancer Screening in Your Community. Dr. Haynes has

contributed to the work of the National Action Plan on Breast

Cancer, the Canada-USA Women’s Health Forum, the Federal

Women’s Health and the Environment Interagency Committee,

and other women’s health initiatives of the OWH.

Susan R. Johnson, M.D., M.S.

Dr. Susan R. Johnson received her B.S. from the University of

Iowa College of Liberal Arts in 1973, her M.D. from the University of Iowa College of Medicine in 1976, and an M.S. in Preventive Medicine and Environmental Health in 1985, also from the

University of Iowa. She completed residency training in Obstetrics

and Gynecology at the University of Iowa Hospitals and Clinics in
A-20

1980. Dr. Johnson then joined the faculty of the University of

Iowa College of Medicine in the Department of Obstetrics and Gynecology, and was promoted to Professor in 1994. Since 1994, she

has served as Associate Dean for Faculty Affairs, and in 1999, was

given a joint appointment in the Department of Epidemiology in

the College of Public Health. She is an Examiner for the American

Board of Obstetrics and Gynecology, a member of the National

Board of Medical Examiners, and has served on the editorial board

of the major journal in her field, Obstetrics and Gynecology. Dr.

Johnson’s clinical and research interests are in the areas of premenstrual syndrome and menopausal health issues, particularly the use

of hormones and other drugs for prevention in post-menopausal

women. She directs both the PMS Clinic and the Menopause

Clinic in the University of Iowa Hospital and Clinics Women’s

Health Center, and serves as the Medical Director of the Family

Planning Council of Iowa. She is principal investigator of the NIH

sponsored Postmenopausal Estrogen/Progestin Interventions Safety

Follow-up study, an investigator in the NIH-sponsored Women’s

Health Initiative, and is active at the national level in the latter

trial. Dr. Johnson also serves on the data, safety, and monitoring

boards of three other multi-center clinical trials of various postmenopausal preventive drugs, and has written numerous articles

and chapters regarding these issues.

1994-1995 National Cancer Institute Preventive Oncology Fellow;

1992-1994 National Cancer Institute Oncology Fellow; 1991-1992

American Cancer Society Fellow; 1982-1987 NIH Medical Scientist Training Program Fellow.

Mhel Kavanaugh-Lynch, M.D., M.P.H.

Dr. Kavanaugh-Lynch has served on numerous committees including the Seattle Breast and Cervical Health Program Lesbian

Advisory Board and is the founder of Breast Cancer Research

Funders’ Network. In addition, between the years of 1994 and

1998, she has organized six conferences with emphasis on breast
A-21

cancer and one conference with the emphasis on Lesbian cancer

risks entitled, Cancer and Cancer Risks Among Lesbians.

Raynard S. Kington, M.D., Ph.D.

Dr. Raynard S. Kington is Director of the Division of Health Examination Statistics at the National Center for Health Statistics of

the Centers for Disease Control and Prevention. In this capacity he

serves as Director of the National Health and Nutrition Examination Survey (NHANES), the only nationally representative study of

the health of the American people based on clinical examination

and biologic specimens. Dr. Kington joined NCHS In 1997 as a

Research Medical Officer in the division, and prior to coming to

NCHS, he was a Senior Natural Scientist in the Health Program at

RAND. While at RAND, Dr. Kington was a Co-Director of the

Drew/RAND Center on Health Aging, a National Institute on Aging Exploratory Minority Aging Center. Dr. Kington attended the

University of Michigan, where he received his B.S. with distinction and his M.D. He subsequently completed his residency in internal medicine at Michael Reese Medical Center in Chicago. He

was then appointed a Robert Wood Johnson Clinical Scholar at the

University of Pennsylvania. While at the University of Pennsylvania, he completed his M.B.A. with distinction and his Ph.D. with a

concentration in Health Policy and Economics at the Wharton

School and was awarded a Fontaine Fellowship. He is

board-certified in Internal Medicine, Geriatric Medicine, and Public Health and Preventive Medicine.

Dr. Kington’s research has focused on the relationships between

socioeconomic position, race, ethnicity, and health status, especially in older populations. His research has also included studies

of the determinants of health care services utilization and the economic impact of health care expenditures among the elderly; determinants of the use of long-term care; the role of income and

wealth in explaining racial differences in health status; and racial

differences in the relationship between history of birth in the South

and health status in later life.
A-22

Dee Mosbacher, M.D., Ph.D.

Dee Mosbacher, M.D., Ph.D., is a physician and film-maker. She

received her Ph.D. from the Union Institute in 1979 and her M.D.

from Baylor College of Medicine in 1983. She completed her psychiatric residency at Harvard University in 1987. Dr. Mosbacher

then moved to San Francisco with her partner of 24 years, Nanette

Gartrell, M.D., and served as Medical Director of Mental Health in

San Mateo County from 1990-1995. She retired from that position

to devote more time to film-making and is now a part-time psychiatric consultant as well as a film-maker .

Dr. Mosbacher is co-producer and co-director of the Academy

Award nominated film Straight from the Heart and the multiple

award-winning All God’s Children. She is also the producer/director of “Out for a Change: Addressing Homophobia in

Women’s Sports,” winner of a National Educational Media Award.

Dr. Mosbacher is the founder and President of Woman Vision, a

non-profit educational media production company. She is a

long-time activist and has served on the boards of various organizations, including Lyon-Martin Women’s Health Services (past

board president), National Gay and Lesbian Task Force, American

Medical Students Association, Pitzer College, and the American

Association of Physicians for Human Rights (now the Gay and

Lesbian Medical Association). Dr. Mosbacher has received many

awards for her service to the lesbian/gay community.

Previous production credits include: “Closets are Health Hazards:

Gay and Lesbian Physicians Come Out,” which has been used in

medical school human sexuality courses and conferences in the

United States and Europe; and “Lesbian Physicians on Practice,

Patients, and Power,” a 30-minute video sent to every medical

school in the United States and Canada by the American

Association of Physicians for Human Rights. Dr. Mosbacher is

currently working on a 60-minute documentary about the history

of women’s music and producing a film about the life and times of

Del Martin and Phyllis Lyon.
A-23

Kate O’Hanlan, M.D.

Former Associate Director of Gynecologic Cancer Surgery at

Stanford University, Dr. Kate O’Hanlan’s research and

publishing focus has been on cancer prevention and surgical

biology of each of these cancers, as well as health issues facing

lesbians and gay men. Dr. O’Hanlan founded the Lesbian Health

Fund, which has made seventeen research grants totaling over

$175,000. She was president of the Gay and Lesbian Medical

Association and wrote “Homophobia As a Health Hazard: Report

of the Gay and Lesbian Medical Association.” Dr. O’Hanlan

co-authored “Anti-Gay Discrimination in Medicine: Results of a

National Survey of Lesbian, Gay and Bisexual Physicians.” In

1994, she wrote the policy statement passed by the American

Medical Women’s Association endorsing legislation for adoption

and custody, and the right to marry for gay men and lesbians.

Dr. O’Hanlan presented “Recruitment and Retention of Lesbians

in Health Research,” at the National Institutes for Health,

the President’s Cancer Panel, and the Office of Research on

Women’s Health asking that prevention, research, and treatment

outreach efforts be focused on the gay and lesbian community.

She is co-principal investigator of the NIH Grant at Stanford

University, studying support and coping strategies of

lesbians with breast cancer. Dr. O’Hanlan published “Lesbian

Health and Homophobia: Perspectives for the Treating Obstetrician/Gynecologist,” and the first Chapters on lesbian health

in Copeland’s Gynecology textbook, in Behavioral Medicine.

Maureen S. O’Leary, M.I.M., R.N.

Maureen S. O’Leary is the Executive Director of the Gay and

Lesbian Medical Association (GLMA), co-sponsor of the

Scientific Workshop on Lesbian Health. Ms. O’Leary has been

an activist in the LGBT community for the past 15 years. In

addition to her work with GLMA, O’Leary has served as Vice

President of the Board of Directors of the San Francisco AIDS
A-24

Foundation, Co-Chair of the Public Relations Committee of the

Bay Area Non Partisan Alliance, Co-founder and chair of the

Lesbians of Achievement Vision and Action awards, and founder

of GLOBAL, a national organization of gay and lesbian business

groups. She has worked in areas of mental health, home care,

and legal services for the poor.

GLMA is an organization of almost 2,000 lesbian, gay, bisexual,

and transgender physicians, medical students, and their

supporters in the U.S. and 12 other countries. Founded in 1981,

GLMA’s mission is to promote the best possible health care for

LGBT and HIV positive people, and to combat homophobia in

the medical profession. GLMA administers the Lesbian Health

Fund which works to strengthen the health of lesbians and their

families through medical research grants and education.

Vivian W. Pinn, M.D.

Dr. Vivian W. Pinn is the first full-time Director of the Office of

Research on Women’s Health at the National Institutes of

Health, an appointment she has held since November 1991. In

February 1994, she was also named as Associate Director for

Research on Women’s Health, NIH. Dr. Pinn came to NIH from

Howard University College of Medicine in Washington, D.C.,

where she had been Professor and Chair of the Department of

Pathology since 1982, and has previously held appointments at

Tufts University and Harvard Medical School. Dr. Pinn has

long been active in efforts to improve the health and career

opportunities for women and minorit ies. She has been invited to

present the ORWH’s mandate, programs, and initiatives to many

national and international individuals and organizations with an

interest in improving women’s health and the health of

minorities. She has recently led a national effort to reexamine

priorities for the women’s health research agenda for the 21st

century, involving over 1,500 advocates, scientists, policy

makers, educators and health care providers in a series of
A-25

scientific meetings across the country to determi ne progress as

well as continuing, or emerging, areas in need of research.

Among her more recent awards and recognitions, Dr. Pinn was

included among “A Dozen Who Have Risen to Prominence” in

women’s health, in the June 1997 New York Times Women’s

Health Section, and she was named the 1997 Excellence in Leadership in the Public Sector Honoree by the National Women’s Economic Alliance Foundation. The American College of Physicians

awarded Dr. Pinn the James D. Bruce Memorial Award in 1998 for

distinguished contributions in preventive medicine; she was

awarded the Athena Award in February 1999 from the Partnership

for Women’s Health at Columbia University; she was honored by

the North American Menopause Society in September 1999; and in

March 2000 she received the Catherine McFarland Award from the

University of Pennsylvania for distinguished service in women’s

health.

Caitlin Ryan, M.S.W., A.C.S.W.

Caitlin Ryan, MSW, ACSW, is a clinical social worker who has

worked on lesbian and gay health and mental health since the

1970s, and AIDS since 1982. She received her clinical training

with children and adolescents in inpatient and community mental

health programs, and began her social work career in school-based

psycho-educational settings. A graduate of Hunter College and

Smith College School for Social Work, Ms. Ryan has worked as an

Instructor at Smith College School for Social Work, a faculty field

Instructor at the University of Maryland School of Social Work

and Community Planning, and as adjunct faculty at Catholic University School of Social Service. She is a founder and past President of the National Lesbian and Gay Health Foundation, and a

founder of the National Association of People With AIDS. In 1981

she initiated and was co-investigator of the National Lesbian

Health Care Survey-the first major study to identify lesbian health

and mental health needs and concerns.
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As a consultant to many federal and non-profit agencies, she has

helped develop policies and implement services for women, adolescents, substance users and lesbians and gay men. Ms. Ryan has

written numerous articles, monographs and reports for members of

Congress, legislators, public officials, health and mental health

providers and consumers, including the first book on AIDS policy

(AIDS: A Public Health Challenge) which served as the basis for

many of the recommendations of the first Presidential Commission

on AIDS. Her most recent book, Lesbian & Gay Youth: Care &

Counseling-the first comprehensive guide to health and mental

health care for lesbian and gay youth-received an American Journal of Nursing Book of the Year Award and the Distinguished

Book Award from the American Psychological Association’s Division 44. It was also published as an issue of the American Academy of Pediatrics adolescent section journal.

As a Senior Research Fellow in the Human Sexuality Studies Program at San Francisco State University, she is currently developing

a study of health and mental health in self-identified lesbian, gay,

bisexual, and transgender youth. Ms. Ryan has received numerous

awards from professional and community-based groups, including

the American Association of Physicians for Human Rights and the

National Association of People With AIDS. In 1988, the National

Association of Social Workers awarded her the profession’s highest honor, “National Social Worker of the Year” for her leadership

and contributions to the AIDS epidemic and social change.

Randall L. Sell, Sc.D.

Dr. Randall Sell has worked in public health research since 1988

when he was hired as a Policy Analyst at the Project HOPE Center

for Health Affairs. At the Center for Health Affairs he helped

conduct a number of health services research studies related to

HIV including several of the earliest studies examining the economic impact of the disease. He currently is the Director of the

Center for Lesbian, Gay, Bisexual and Transgender Health and is
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an Assistant Professor at Columbia University’s Joseph L. Mailman School of Public Health. His primary area of research interest

is addressing the methodological issues surrounding the sampling

of sexual orientations for the conduct of public health research.

Most recently, Dr. Sell coordinated the writing of a white paper on

lesbian, gay, bisexual, and transgender health for the Gay and Lesbian Medical Association and Health Resources and Services Administration. Despite keeping a busy schedule at the University,

Dr. Sell finds time to lend his expertise to other endeavors including serving as a consultant to the Kaiser Family Foundation; serving on the Finance Committee of the Callen-Lorde Community

Health Center; and serving as Director of the Board of the New

York Peer AIDS Education Coalition.

Sabrina Sojourner

Sabrina Sojourner is an African American writer, lecturer, and

consultant with roots in many gardens. Her personal and

professional history spans nearly 30 years and includes leadership

in several progressive movements. A nationally noted feminist

writer, speaker, and trainer, Ms. Sojourner has used her experience

to organize grassroots campaigns in support of the passage of

national and local legislation on hate crimes, a variety of health

issues, lesbians and gay men in the military, civil rights, higher

education, and family violence. In addition to the curriculum and

training development work with the Mautner Project for Lesbians

with Cancer, Ms. Sojourner works with a variety of not-for-profit

and educational organizations to enhance their multicultural or

government-relations activities. Her emphasis is on capacity

building, including but not limited to, leadership development;

staff, organizational and board development; HIV/AIDS

prevention education planning and evaluation; and building

multi-faith spiritual communities and rituals. She has also written,

lectured, created and facilitated interactive workshops on many of

those same issues. She has built an excellent reputation for her

work as a mediator and facilitator. Her writings have appeared in
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numerous anthologies, magazines and newspapers, and she has

self-published a collection of her poems and narratives titled

Psychic Scars and Other Mad Thoughts. Her next book, Living By

the Heart, is due out in the summer of 2001. Ms. Sojourner also

serves as the Chair of the Metropolitan Washington Regional HIV

Health Services Planning Council, also known as the Ryan White

Title I Planning Council. As the Chair, she guides a 60 member

board through the processes necessary to meet its goals of

overseeing services provided Ryan White Title I recipients.
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Appendix 3. List of Acronyms

AHRQ— Agency for Healthcare Research and Quality

AIDS— Acquired immunodeficiency syndrome

APA— American Psychological Association

APHA— American Public Health Association

BMI— body mass index

BRFSS— Behavioral Risk Factors Surveillance Survey

CAPI— computer-assisted personal interview

CASI— computer-administered self-interview

CATI— computer-assisted telephone interview

CDC— Centers for Disease Control and Prevention

CSR— Center for Scientific Review

DHHS— Department of Health and Human Services

HIV— Human immunodeficiency virus

HRSA— Health Resources and Services Administration

HPV— Human papilloma virus

IC— Institute Center

IDU— injection drug user

IOM— Institute of Medicine

IRB— institutional review board

LGBT— lesbian, gay, bisexual, and transgender

MH/SA— mental health/substance abuse

NCHS— National Center for Health Statistics

NCI— National Cancer Institute

NCVS— National Crime Victim Survey

NHANES— National Health and Nutrition Examination Study

NHIS— National Health Interview Survey

NLHCS-National Lesbian health Care Survey

NIAAA— National Institute on Alcohol Abuse and Alcoholism

NIA— National Institute on Aging

NICHD— National Institute of Child Health and Human

 Development

NIDA— National Institute on Drug Abuse

NIH— National Institutes of Health

NIMH— National Institute of Mental Health

NSFV— National Survey of Family Violence
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OPRR— Office for Protection from Research Risks

ORWH— Office of Research on Women’s Health

OWH— Office on Women’s Health

PA— program announcement

PI— principal investigator

RFA— request for application

RFP— request for proposal

RO1— type of Federal grant

SAMHSA— Substance Abuse and Mental Health Services

 Administration

SEER— Surveillance, Epidemiology, and End Results

STD— sexually transmitted disease

SWAN— Study of Women’s Health Across the Nation

WHI— Women's Health Initiative

YRBS— Youth Risk Behavior Survey