U.S. GOVERNMENT PRINTING OFFICE

64–770CC WASHINGTON : 2000

THE HEALTH CARE FAIRNESS ACT OF 1999

HEARING

BEFORE THE

SUBCOMMITTEE ON

HEALTH AND ENVIRONMENT

OF THE

COMMITTEE ON COMMERCE

HOUSE OF REPRESENTATIVES

ONE HUNDRED SIXTH CONGRESS

SECOND SESSION

MAY 11, 2000

Serial No. 106–108

Printed for the use of the Committee on Commerce

(

(II)

COMMITTEE ON COMMERCE

TOM BLILEY, Virginia, Chairman

W.J. ‘‘BILLY’’ TAUZIN, Louisiana

MICHAEL G. OXLEY, Ohio

MICHAEL BILIRAKIS, Florida

JOE BARTON, Texas

FRED UPTON, Michigan

CLIFF STEARNS, Florida

PAUL E. GILLMOR, Ohio

Vice Chairman

JAMES C. GREENWOOD, Pennsylvania

CHRISTOPHER COX, California

NATHAN DEAL, Georgia

STEVE LARGENT, Oklahoma

RICHARD BURR, North Carolina

BRIAN P. BILBRAY, California

ED WHITFIELD, Kentucky

GREG GANSKE, Iowa

CHARLIE NORWOOD, Georgia

TOM A. COBURN, Oklahoma

RICK LAZIO, New York

BARBARA CUBIN, Wyoming

JAMES E. ROGAN, California

JOHN SHIMKUS, Illinois

HEATHER WILSON, New Mexico

JOHN B. SHADEGG, Arizona

CHARLES W. ‘‘CHIP’’ PICKERING,

Mississippi

VITO FOSSELLA, New York

ROY BLUNT, Missouri

ED BRYANT, Tennessee

ROBERT L. EHRLICH, Jr., Maryland

JOHN D. DINGELL, Michigan

HENRY A. WAXMAN, California

EDWARD J. MARKEY, Massachusetts

RALPH M. HALL, Texas

RICK BOUCHER, Virginia

EDOLPHUS TOWNS, New York

FRANK PALLONE, Jr., New Jersey

SHERROD BROWN, Ohio

BART GORDON, Tennessee

PETER DEUTSCH, Florida

BOBBY L. RUSH, Illinois

ANNA G. ESHOO, California

RON KLINK, Pennsylvania

BART STUPAK, Michigan

ELIOT L. ENGEL, New York

TOM SAWYER, Ohio

ALBERT R. WYNN, Maryland

GENE GREEN, Texas

KAREN MCCARTHY, Missouri

TED STRICKLAND, Ohio

DIANA DEGETTE, Colorado

THOMAS M. BARRETT, Wisconsin

BILL LUTHER, Minnesota

LOIS CAPPS, California

JAMES E. DERDERIAN, Chief of Staff

JAMES D. BARNETTE, General Counsel

REID P.F. STUNTZ, Minority Staff Director and Chief Counsel

SUBCOMMITTEE ON HEALTH AND ENVIRONMENT

MICHAEL BILIRAKIS, Florida, Chairman

FRED UPTON, Michigan

CLIFF STEARNS, Florida

JAMES C. GREENWOOD, Pennsylvania

NATHAN DEAL, Georgia

RICHARD BURR, North Carolina

BRIAN P. BILBRAY, California

ED WHITFIELD, Kentucky

GREG GANSKE, Iowa

CHARLIE NORWOOD, Georgia

TOM A. COBURN, Oklahoma

Vice Chairman

RICK LAZIO, New York

BARBARA CUBIN, Wyoming

JOHN B. SHADEGG, Arizona

CHARLES W. ‘‘CHIP’’ PICKERING,

Mississippi

ED BRYANT, Tennessee

TOM BLILEY, Virginia,

(Ex Officio)

SHERROD BROWN, Ohio

HENRY A. WAXMAN, California

FRANK PALLONE, Jr., New Jersey

PETER DEUTSCH, Florida

BART STUPAK, Michigan

GENE GREEN, Texas

TED STRICKLAND, Ohio

DIANA DEGETTE, Colorado

THOMAS M. BARRETT, Wisconsin

LOIS CAPPS, California

RALPH M. HALL, Texas

EDOLPHUS TOWNS, New York

ANNA G. ESHOO, California

JOHN D. DINGELL, Michigan,

(Ex Officio)

(III)

C O N T E N T S

Page

Testimony of:

Bau, Ignatius, Director, Health Policy, Asian Pacific-Islander American

Health Forum ................................................................................................ 118

Cohen, Jordan J., President and CEO, Association of American Medical

Colleges .......................................................................................................... 74

Friedell, Gilbert H., Director Emeritus, Markey Cancer Center, University of Kentucky; Member, Institute of Medicine Committee on Cancer

Research Among Minorities and the Medically Underserved ................... 69

Harley, John B., Oklahoma Medical Research Foundation .......................... 107

Hayworth, Hon. J.D., a Representative in Congress from the State of

Arizona ........................................................................................................... 22

Jackson, Hon. Jesse L., Jr., a Representative in Congress from the State

of Illinois ........................................................................................................ 13

Lewis, Hon. John, a Representative in Congress from the State of Georgia ................................................................................................................... 12

Peterson, Anne, Health Commissioner, Commonwealth of Virginia ............ 83

Rios, Elena, President, National Hispanic Medical Association ................... 110

Rodriguez, Hon. Ciro D., a Representative in Congress from the State

of Texas .......................................................................................................... 18

Satcher, Hon. David, U.S. Surgeon General, Department of Health and

Human Services ............................................................................................ 26

Schulman, Kevin A., Associate Professor of Medicine and Director of

the Center for Clinical and Genetic Economics, Duke University Medical Center ..................................................................................................... 76

Sullivan, Louis W., President, Morehouse School of Medicine ..................... 42

Underwood, Hon. Robert A., a Delegate in Congress from Guam ................ 15

Watts, Hon. J.C., a Representative in Congress from the State of Oklahoma ............................................................................................................... 24

Material submitted for the record by:

Academic Health Centers, letter dated May 10, 2000, to Hon. Michael

Bilirakis ......................................................................................................... 126

Bau, Ignatius, Director, Health Policy, Asian Pacific-Islander American

Health Forum, response for the record ....................................................... 175

Cohen, Jordan J., President and CEO, Association of American Medical

Colleges, responses for the record ............................................................... 203

Coordination of Minority Health Activities Within the Department of

Health and Human Services, paper entitled .............................................. 125

Davis-Satterla, Loretta, Director, Division of HIV/AIDS-STD, Michigan

Department of Community health, prepared statement of ....................... 127

Friedell, Gilbert H., Director Emeritus, Markey Cancer Center, University of Kentucky, responses for the record .................................................. 196

Harley, John B., Oklahoma Medical Research Foundation, letter dated

June 15, 2000, to Hon. Michael Bilirakis ................................................... 177

Liberti, Thomas, Chief, Bureau of HIV/AIDS, Florida Department of

Health, prepared statement of ..................................................................... 139

National Alliance of State and Territorial AIDS Directors, letter dated

May 11, 2000, to Hon. Michael Bilirakis .................................................... 129

National Association of Community Health Centers, Inc., letter dated

May 11, 2000, to Hon. Thomas Bliley and Hon. Michael Bilirakis .......... 136

National Medical Association, letter dated May 11, 2000, to Hon. Michael

Bilirakis ......................................................................................................... 137

Peterson, Anne, Health Commissioner, Commonwealth of Virginia, response for the record ..................................................................................... 173

Research!America, letter dated May 10, 2000, to Hon. Michael Bilirakis ... 138

Page

IV

Material submitted for the record by—Continued

Rodriguez, Gloria M., Assistant Commissioner, New Jersey Department

of Health and Senior Services, Division of AIDS Prevention and Control, prepared statement of .......................................................................... 138

Ruffin, John, Associate Director for Research on Minority Health, National Institutes of Health, letter dated July 13, 2000, enclosing response for the record ..................................................................................... 179

Satcher, Hon. David, U.S. Surgeon General, Department of Health and

Human Services, letter dated June 29, 2000, enclosing response for

the record ....................................................................................................... 181

Schulman, Kevin A., Associate Professor of Medicine and Director of

the Center for Clinical and Genetic Economics, Duke University Medical Center, response for the record ............................................................. 175

(1)

THE HEALTH CARE FAIRNESS ACT OF 1999

THURSDAY, MAY 11, 2000

HOUSE OF REPRESENTATIVES, COMMITTEE ON COMMERCE, SUBCOMMITTEE ON HEALTH AND ENVIRONMENT, Washington, DC.

The subcommittee met, pursuant to notice, at 11:48 a.m., in room

2322, Rayburn House Office Building, Hon. Michael Bilirakis

(chairman) presiding.

Members present: Representatives Bilirakis, Whitfield, Coburn,

Greenwood, Brown, Waxman, Green, Strickland, Barrett, Towns,

and Eshoo.

Staff present: Carrie Gavora, professional staff; Marc Wheat, majority counsel; Kristi Gillis, legislative clerk; and John Ford, minority counsel.

Mr. COBURN [presiding]. Let me, first of all, apologize to all those

in the room and my fellow members for the tardiness for the beginning of this. The votes this morning did change our schedules and

then the briefings on China in which a lot of members are involved

could not be missed.

We are going to have opening statements and I am going to dispense and enter mine in the record.

[The prepared statement of Hon. Tom A. Coburn follows:]

PREPARED STATEMENT OF HON. TOM A. COBURN, A REPRESENTATIVE IN CONGRESS

FROM THE STATE OF OKLAHOMA

Mr. Chairman, I am pleased to welcome Dr. John Harley from my home state of

Oklahoma. Dr. Harley serves as both the Head of the Arthritis and Immunology Department at the Oklahoma Medical Research Foundation and as a Professor of Medicine at the University of Oklahoma Health Sciences Center, where I received my

own medical degree. Since my congressional district includes the Cherokee Nation,

the second largest Indian nation in the country, I am anxious to hear about his

work concerning the Native American Biomedical Research Center at OMRF.

I am also pleased to welcome my friend and colleague J.C. Watts as well as the

Surgeon General, Dr. David Satcher, whom I have the greatest respect and admiration for and have had the privilege of getting to know and work with over the past

several years on numerous public health issues.

The majority of the patients I see in my medical practice tend to be women and

ethnic minorities and the issue of health care disparities for any group is a very

important issue for me, both as a practicing physician and a member of Congress.

While there are numerous reasons for the disparities that exist, some have been created as a direct result of misguided federal policies. One obvious example is the federal response to HIV/AIDS.

Along with Commerce Committee Chairman Tom Bliley, last year I requested an

investigation by the U.S. General Accounting Office (GAO) to determine if racial inequities existed within federal HIV/AIDS programs. The GAO found that ‘‘African

Americans, Hispanics, and women are served by the Ryan White CARE Act in higher proportions than their representation in the AIDS population,’’ yet ‘‘they generally receive less appropriate health care for their disease.’’

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This disparity is a direct result of the CARE Act’s inappropriate focus solely on

AIDS, the end stage of HIV infection. The CARE Act does not recognize those with

HIV who have not yet developed AIDS. Women, African Americans and Hispanics—

all of whom have significantly higher HIV rates—are therefore largely ignored by

this oversight.

States and cities with relatively new epidemics are not receiving the federal support they need to care for all of those in their communities that are infected. Because it may take ten or more years for someone infected with HIV to develop AIDS,

it will therefore take more than a decade for the CARE Act to recognize the extent

of the epidemic as it exists today.

The failure to recognize HIV has another significant negative impact on women

and communities of color at the local level. Planning Councils which largely determine how funds will be spent and set care and service priorities are required by

law to reflect the demographic make-up of the epidemic in an area. As long as only

those with AIDS are represented, women, minorities and other groups that are

being increasingly affected by HIV will be largely excluded from this decision making process and denied access to many of the available health care services.

In testimony submitted for this hearing, Ms. Loretta Davis-Satterla, the Director

of Michigan’s Division of HIV/AIDS-STD, states that ‘‘AIDS case surveillance alone

done not accurately reflect the extent of the HIV epidemic among African Americans, women, adolescents and young adults.’’ She notes that ‘‘in Michigan, confidential HIV reporting has been required by statute since 1989.’’ And ‘‘as a direct result

of having HIV case data available for planning efforts, current prevention efforts

supported by the Michigan Department of Community Health emphasize racial/ethnic minorities, women and at-risk youth.’’

Davis-Satterla explains that ‘‘when seeking to address these issues, with the goal

of achieving 100% access and 0% disparity, it is essential that systems are utilized

that allow identification of emerging trends relative to race/ethnicity, gender and behavioral risk factors. Planning based on trends in HIV infection provides a more accurate assessment of the distribution of the infected population, the number of individuals in need of access to treatment, and the type of medical and support services

required to meet client needs. In Michigan, HIV case reporting and the Uniform Reporting System have been effective tools in addressing the current epidemic by facilitating planning of appropriate prevention, early intervention and care services.’’

In addition to HIV/AIDS care services, the federal prevention policies have also

disadvantaged women and minorities. This failure can be seen in the fact that the

number of infected African Americans and women has continued to increase in recent years. Perhaps the single most tragic failure of the existing prevention policy

was the decision to allow children, mostly African American and Hispanic children,

to become hapless victims of HIV—despite the fact that the capability exists to virtually eliminate pediatric AIDS.

In 1994, it was discovered that administration of the drug AZT—now known as

ZDV—during pregnancy and childbirth could dramatically reduce the chance that

a child of an HIV-positive mother would be infected. Another study showed that

HIV transmission from mother-to-child can be nearly eliminated when Caesarean

section is coupled with ZVD at birth. A more recent study has found that even if

treatment begins shortly after birth, transmission can still be considerably reduced.

Despite these medical miracles, a significant number of women are still not tested

for HIV during their pregnancy and many children are being allowed to become

needlessly infected with an incurable, devastating disease that will prematurely

claim their lives. Half of these infected children will be die before their third birthday and nearly all will be dead by age 5 unless they are promptly diagnosed and

receive proper medical treatment which can prolong and improve an infant’s life.

Nearly all of the 382 children reported with AIDS last year—84 percent—were African American and Hispanic. Our government owes an explanation to the mothers

and families of these children as to why they were allowed to become infected with

a disease that could have been prevented.

I would expect that any legislation we consider this year to address the issue of

health care disparities must ensure that not one more child is allowed to become

infected by HIV and die of AIDS.

I also intend to introduce a bill to reauthorize the Ryan White CARE Act, the federal HIV/AIDS care program, which will address the issue of disparities in HIV/

AIDS care. It will do this by ensuring increased involvement by all communities affected by the disease on planning councils and by better targeting of federal funds

to underserved communities. I hope that every member of this committee would

sign onto this bill to ensure increased access to life saving care for all Americans

impacted by HIV, regardless of their race or gender.

3

Mr. COBURN. I will now recognize the ranking member, Mr.

Brown for his opening statement.

Mr. BROWN. I want to thank my colleagues, Mr. Thompson, Mr.

Lewis, Mr. Jackson and others for joining us today. I would also

like to extend a special welcome to Mr. Satcher, who among his

many accomplishments throughout his career, was first in his class

at the Case Western Reserve University Medical School some not

too many years ago in Cleveland, Ohio. Dr. Sullivan, it is nice to

have you with us also.

I am a co-sponsor of the Health Care Fairness Act, as all the witnesses are today. This legislation makes sense. We need the research that H.R. 3250 fosters to make decisions about the health

care system; we need the education 3250 facilitates to reduce disparities in health; we need the training 3250 supports to reduce

disparities in health care.

It is as simple as that and as complicated as that. If I polled everyone in the room on the criteria that should be used to evaluate

the U.S. health care system, my guess is the answers would not

vary all that much. Most of us would mention access, quality, cost,

the system should provide more Americans, all Americans access to

high quality care at a reasonable cost. I hope equity would work

its way into the formula.

A health care system that perpetuates significant and reversible

racial, ethnic or socioeconomic disparities in health and life expectancy is not my idea of a good health care system. In a Nation like

ours, one that is increasingly defined by the diversity of its population, it is my idea of a system on its way out.

The way we judge our health care system is not logical or is not

explicit. If we actually use standards like access, quality, efficiency

and equity to guide health care policy and health care spending, we

would not need this legislation. Universal coverage would be the

priority. Research and disparities in health care, strategies to minimize those disparities would be a priority.

Let us look at the way the U.S. health care system actually

works. Forty-four million people are uninsured. Certain minority

populations, especially Hispanics, are far more likely to be uninsured than white Americans. The Nation subsidizes health insurance for individuals fortunate enough to be employed by a firm

that offers health coverage; their premiums are pre-taxed.

We also cover low income children and a few other discrete categories of very poor people and we provide incomplete but valuable

coverage to the elderly. If you do not fall into one of those categories, tough luck.

The Nation funds enormous amounts of research, very little of it

devoted to understanding why there are significant disparities in

health and health care between populations in the United States,

and even less of it devoted to doing something about those disparities.

Mr. Satcher did his best at CDC. Ed Towns and others on this

subcommittee have done their best but it is changing much, much

too slowly.

Over time, enough evidence has accumulated so that there is no

doubt about it, there is significant disparities in health and health

care. Minority populations, as we all know, have higher rates of

4

cancer, heart disease, diabetes, HIV AIDS and that is just a partial

list.

Minorities have shorter life expectancies, higher infant mortality

rates and higher incidence of premature death. Minorities are less

likely to receive cancer screening and less likely to receive monitoring. Minorities are less likely to receive childhood and adult vaccinations, doctors are four times more likely to correctly identify a

heart attack and hospitalize a patient if that patient is white. According to recent research, doctors are getting better at treating

cancer pain unless you are a Hispanic or African-American.

We have a top notch health care system, what this Nation is

spending money on, subsidizing health insurance for millions of

working Americans and other select groups, financing

groundbreaking research that fuels medical advancement throughout the world. What this Nation is spending money on is not

wrong, but it is not 100 percent right either. We need to work on

the system until it does not matter what your race is, what your

ethnicity is, what your employment status is, you should still be a

beneficiary of medical advancement and a recipient of the highest

quality care this Nation has to offer.

The Health Care Fairness Act sets the stage for that system. I

am thrilled the subcommittee is finally paying attention to this

very important legislation.

Mr. COBURN. The gentleman from New York?

Mr. TOWNS. Thank you very much.

Also, let me thank the ranking member, Mr. Brown, for his outstanding work in this area. Also, I am delighted to see the former

Secretary of Health, Dr. Sullivan, and Surgeon General Satcher

and my colleagues, Mr. Thompson, Mr. Lewis, Mr. Jackson and Mr.

Rodriguez.

Let me just say that we have undoubtedly made tremendous advances in the area of health in the last few years in the areas of

treatment and new technology—gene therapy vectors, new antibiotics, surgeries, unborn children to reversed birth defects. Even

with all these wonderful developments, there are still inequities in

our health care system.

There is a growing mountain of evidence that not all patients

with the same signs and symptoms are being treated equally under

our system of care. There is compelling evidence that there are racial and ethnic health disparities and now is the time to address

this issue.

A number of studies published in the New England Journal of

Medicine, the Journal of American Medical Association by the Kaiser Family Foundation demonstrates the extent of racial and ethnic

health disparities in our medical system. These studies range from

decreased aggressive cancer care in blacks to perception of minority

groups that they receive lower quality of health care.

We cannot continue to allow our health care professionals to

treat patients differently because of the patient’s ethnic background. That is unacceptable in the United States of America.

This complex problem suggests the need for a comprehensive answer and the answer is H.R. 3250, the Health Care Fairness Act.

This bill addresses the issue of health disparities from a number

of different and crucial vantage points. First and foremost, it estabVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00008 Fmt 6633 Sfmt 6602 E:\HEARINGS\64770 pfrm08 PsN: 64770
5

lishes the center at the NIH to increase the breadth and depth of

research in this area. I think it is of the utmost importance that

a premiere research center such as NIH take a leadership role in

addressing health disparities and aiding the transfer of research

information to patient-friendly and useful data.

The bill also deals with the education of physicians across skill

ranges to begin to highlight their biases and change them. These

are only two of the points I wanted to highlight in this bill. Along

with the comprehensive approach to this bill, I want to mention

our community health centers and the important role they play in

treating many of the patients who this bill will positively impact.

Our Nation’s community health care centers provide care to over

7 million minorities each year. The culturally sensitive care provided at these health centers is delivered in an efficient and effective manner, leading to documented decreases in preventable illnesses and increased rate of childhood immunization and reduction

in inappropriate usage of hospital emergency rooms and a dramatic

drop in infant mortality rates to name just a few.

I think we should look at service delivery models such as community health centers are currently working to decrease these disparities. I also want to acknowledge again both our Surgeon General

and the former Secretary of Health, Dr. Sullivan, now President of

Morehouse Medical School on their leadership in the area of reducing health disparities.

I am looking forward to the enlightening testimony coming first,

from our colleagues and others who will be giving us information

as to why we might need to move very rapidly with H.R. 3250.

On that note, I yield.

Mr. COBURN. Thank you.

Recognize the gentleman from California.

Mr. WAXMAN. For years this subcommittee has led congressional

efforts to eliminate the persistent health disparities in communities

of color. I hope that today’s hearing marks a renewal of these efforts to improve access to care and expand research of importance

for all Americans.

The last time we addressed this issue was in the 103d Congress

when Senator Kennedy and I sponsored the NIH Revitalization Act

which established the NIH Office of Research on Minority Health

and the Minority Health Improvement Act, which would have established national priorities in improving the health status of minorities.

I am pleased we are going to hear from Surgeon General Satcher

and Mr. Louis Sullivan to testify to our Government’s current and

past efforts. They can attest to the progress which has been made.

As one measure of the long road ahead of us, I want to read two

conclusions from the Institute of Medicine’s recent report on the

‘‘Unequal Burden of Cancer’’ on communities of color. ‘‘One, the research priority-setting process at NCI and NIH fails to serve the

needs of ethnic minorities and medically underserved groups.’’ ‘‘The

committee found little evidence that NCI or NIH has undertaken

a thorough assessment of training programs to determine whether

these programs are producing adequate numbers of ethnic minority

researchers in all appropriate cancer research fields.’’ I think these

conclusions speak volumes about the need for congressional action.

6

The Administration is certainly not idle. I know the NIH has

convened an internal working group on health disparities but I am

certain every member and witness here today will agree that there

is little danger of doing too much for Americans who have historically had to settle for too little attention and too few resources.

As a co-sponsor of H.R. 3250, I believe this bipartisan legislation

would be of enormous help. I strongly encourage you, Mr. Chairman, to schedule a markup for next week or at the earliest possible

date. The remaining time in the session is very short but the need

for health care equity is very great.

Mr. COBURN. I thank the gentleman.

Ms. Eshoo?

Ms. ESHOO. Thank you and good afternoon everyone.

Thank you for holding this very important hearing on H.R. 3250.

I think the legislation really marks a historic effort to improve the

health of minorities across our country.

I want to commend our colleague, Congressman Bennie Thompson, for introducing the bill. It is a solid piece of work and it is

thoughtful. I have gone over it section by section and I salute you

for the work you have done on this and also our distinguished

Chairman for taking the first important step toward the enactment

of this legislation by holding today’s hearing.

In February 1998, President Clinton challenged our Nation to an

ambitious goal. By the year 2010, we must eliminate longstanding

disparities in health status experienced by all racial and ethnic minority populations in our Nation. His challenge followed a series of

disturbing findings that despite significant improvements in the

health of Americans, minority Americans continue to suffer from

certain diseases at up to five times the rate of white Americans.

Here are some examples. African-American men under 65 suffer

from prostate cancer and heart disease at nearly twice the rate of

whites. Vietnamese women suffer from cervical cancer at nearly

five times the rate of whites. Latinos have two to three times the

rate of stomach cancer. Native Americans suffer from diabetes at

nearly three times the average rate while African-Americans suffer

70 percent higher rates than white Americans.

That is astronomical when you stop and think about that. I want

to repeat that. African-Americans suffer 70 percent higher rates

than white Americans in that area.

We have to close these gaps. Much more needs to be known

about why minority populations are experiencing such desperately

high rates and other diseases that we really can target much needed resources toward eliminating the disparities.

This legislation tackles the problem by establishing a new National Center for Research on Minority Health and Health Disparities at NIH which I am very fond of calling our National Institutes

of Hope. I think if we can build this legislation into our National

Institutes of Health, it really is going to give hope to so many

Americans across our country.

The bill also authorizes the Agency for Health Care Research

and Quality to conduct and support research which is a very, very

important part of this effort. We have to learn more so that we can

do better.

7

I am especially excited about the provisions in the legislation

aimed at education and outreach surrounding minority health. Too

few health care professionals today are really aware of the special

health care needs of minority populations or even how to provide

them. Under this bill, grants will be available to medical schools

and nursing schools to incorporate the cultural awareness programs in that very special education.

Community and rural health centers will receive incentive payments to develop innovative strategies to reduce ethnic health disparities for health professionals.

Finally, the bill directs the Secretary to develop a system to

evaluate the performance of Medicare and Medicaid and how they

are doing.

I want to welcome the very, very distinguished people here to

testify today. We are fortunate to have the Surgeon General, Dr.

Satcher, and to hear his enlightened views and a very warm and

special welcome to the former Secretary of Health and Human

Services, Dr. Sullivan. He has participated in more than one conference I have attended on health care.

To each and every one of you, it is not very often we come into

this hearing room and I see a very long line out in the corridor,

so this is an issue that I think all Americans care about. This Congress can do something about it and I hope after the hearing we

will move to markup and to the floor.

Thank you.

Mr. COBURN. I just want to make a couple of comments.

Much of what I have heard in our opening statements, as a practicing physician, I agree with. There is a tremendous disparity but

not all is despair. There are lots of minorities that get great care.

I think it is very important that we focus on those who do not because there are lots of non-minorities who do not get great care too.

What we want to do is keep in balance. One of your statements,

even though it is meant, in a lot of communities—Muskogee, Oklahoma—you do not just have tough luck if you do not have health

insurance because the physician community, the hospital community, the nursing community, the pharmacist community work to

take care of the people. That does not mean they are all taken care

of as great as we can.

I want to make sure as we hear our testimony and put our words

in the record that where credit needs to be given, there are a lot

of communities, communities of color and noncolor, that are doing

a great job taking care of those folks that do not have what we

want everyone to have.

For us to say that the problem is without that light, there is

light. We just have to do a whole lot better and there are a lot of

people who we need to care for that are not being cared for today.

[Additional statements submitted for the record follow:]

PREPARED STATEMENT OF HON. MIKE BILIRAKIS, CHAIRMAN, SUBCOMMITTEE ON

HEALTH AND ENVIRONMENT

My thanks to all of the witnesses who have taken the time to testify at today’s

hearing on H.R. 3250, the Health Care Fairness Act. The purpose of this legislation

is to identify and rectify health disparities that occur among minorities.

I am especially pleased that upon the rescheduling of this hearing, the Administration was able to send three witnesses, including Dr. Satcher. Hopefully, this

8

hearing will provide a clear picture of the Administration’s perspective on the

Health Care Fairness Act and proposals related to the Office of Minority Health in

particular. I would ask unanimous consent at this point to enter into the record a

letter of support from the Association of Academic Health Centers in support of H.R.

2391 and H.R. 3250, bills to elevate the Office of Research on Minority Health at

the National Institutes of Health.

In preparing for this hearing, I have reviewed with concern the health disparities

that persist between some minority groups and the non-Hispanic white population.

Hepatitis C, heart disease, diabetes, lupus, lung cancer, and cervical cancer are but

a few of the diseases that disproportionately affect minorities in this country.

I was alarmed by the very significant disparities found in those infected with HIV,

the silent killer of so many Americans. I would ask unanimous consent to enter into

the record the testimony of Mr. Thomas Liberti, Chief of the Bureau of HIV/AIDS

for the Florida Department of Health. Mr. Liberti could not join us today in person

due to a back injury, and we all wish him a safe recovery.

Likewise, Hepatitis C has also been identified at significantly higher rates among

minorities. For example, available data indicates that the rate of Hepatitis C infection among African-Americans is 2 to 3 times higher than the general U.S. population.

Of course, some health care providers—including community health centers—are

acutely aware of this problem from their day-to-day work on the front lines of medicine. Community health centers are the leading providers of health care to over 7

million minorities in medically under-served urban areas each year. As a strong

supporter of their vital mission, I believe it is important to recognize the critical role

they play in attempting to reduce minority health disparities. I would ask unanimous consent to enter into the record a statement on these issues by the National

Association of Community Health Centers.

We have made every attempt to accommodate a broad variety of witnesses today,

and I would appreciate the Subcommittee’s help in managing our time. Again, I

want to welcome all of our witnesses and thank them for their time and effort in

addressing this concern.

PREPARED STATEMENT OF HON. CLIFF STEARNS, A REPRESENTATIVE IN CONGRESS

FROM THE STATE OF FLORIDA

Thank you, Chairman Bilirakis, for holding this important hearing. I look forward

to hearing from our distinguished witnesses, which include several of our colleagues

as well as our current Surgeon General David Satcher and former Secretary of

Health and Human Services, Dr. Louis Sullivan.

H.R. 3250 addresses how we can improve access to health care for minorities. This

goal would be achieved in the bill in several important ways. First, it would establish a New Center for Research on Minority Health and Health Disparities at NIH.

This center would award grants for research in areas that are currently underserved.

In conjunction with this the Agency for Health Care Research and Quality would

conduct outcomes research so that we can identify why such disparities occur. This

would be coupled with data collection relating to the effects of race and ethnicity

on access to health care. We need to know what the current roadblocks are before

we can bridge the gap.

This information will help to address why there is such a higher rate of heart disease, diabetes and cancer in the African-American, Hispanic and Native American

communities than in other ethic populations. I was particularly interested in the

testimony submitted by Dr. Fridell on the higher rate of prostate cancer among African-Americans than white men. Dr. Fridell also points out that we need to find out

why Chinese American men have such low rates of prostate cancer compared to African American men.

We need to look at variety of critical issues when evaluating why certain groups

in our population have higher rates of cancer, diabetes and cardiovascular disease.

More importantly, we need to look the roles that diet, customs, and environmental

factors might play in the higher incidences of certain diseases in our minority communities.

There is one other area that merits discussion and that is the role genetics play

in why certain diseases strike some and not others. In that regard, the new area

of NIH research opportunity ‘‘Genomics’’ is one of the most exciting and promising

developments in molecular medicine. Once the map of the normal function of human

genes is made available, which is imminent, we will then be able to make comparisons with our own unique genetic blueprint. This will herald a new area of computer

9

collaboration with molecular medicine to develop a ‘‘DNA Chip,’’ transferring the

functions of the human genome to a computer chip to be run for comparison for diagnostic and treatment purposes against our own genetic map. The software and

hardware will need to be developed by the cooperative efforts of genome biologists,

mathematicians and engineers to make the new field of Genomics a reality. We

must ensure that our minority communities are not left out of this important aspect

of future research efforts. It could very be a key to finding the answers to the many

questions we have about why certain populations are more prone to certain types

of diseases.

Thank you, Mr. Chairman, and I look forward to hearing our distinguished group

of panelists.

PREPARED STATEMENT OF HON. BARBARA CUBIN, A REPRESENTATIVE IN CONGRESS

FROM THE STATE OF WYOMING

I think the intent of this bill is admirable. We all want equity in the health care

system when it comes to access to services, availability of health insurance, and fair

treatment for ALL patients.

Studies show us that disparities do exist within the health care system when it

comes to race and ethnicity, and that concerns me. But substantial inequities in

health care can also be found between males and females, children and adults, and

urban versus rural areas.

What I question in this legislation is whether or not we’re going too far, too fast

with something that could very easily wind up to be another link in the chain of

big government.

This bill creates an entirely new ‘‘Center’’ to study the health of minority populations. How exactly does this ‘‘Center’’ fit within the structure of NIH? This is not

clear to me. It is, in essence, its own institute within NIH but it would receive its

funding outside of the HHS or NIH budget allocation. This amounts to earmarking

federal dollars to a ‘‘Center’’ with, correct me if I’m wrong, a rather unique status

while other NIH institutes are forced to fight for their dollars in the NIH allocation????

To me, this essentially provides a carve-out for this ‘‘Center,’’ perhaps to the detriment of other NIH institutes. And where does the Administration stand on this

bill? We don’t even know that.

Have we reached that point in time when the only answer to the problems facing

the health of minority populations is to create another government program that

will most assuredly cost billions of dollars to the American taxpayer??

I’m not convinced that we’ve reached that point and that’s precisely why I’m here

today. I look forward to hearing from our witnesses today and hope they can shed

some light on this issue.

Thank you, Mr. Chairman, and I yield back the balance of my time.

PREPARED STATEMENT OF HON. TOM BLILEY, CHAIRMAN, COMMITTEE ON COMMERCE

I’m pleased that the Subcommittee is holding this hearing today on HR 3250, the

Health Care Fairness Act. This legislation seeks to enhance research and education

to address disparities in health care for minorities.

African Americans have a 70 percent higher rate of diabetes than whites. Hispanics suffer at a rate nearly double that of whites. African Americans have a cancer death rate about 35 percent higher than that for whites. Vietnamese women suffer from cervical cancer more than 5 times the rate of white women. We need to

know why this is the case and I hope today’s hearing will help.

I’m particularly pleased that Dr. Anne Peterson, the Commissioner of Health with

the Commonwealth of Virginia will be here today to testify.

The State of Virginia began mandatory reporting of HIV back in 1989. Collecting

this data, as you will hear from Dr. Peterson, has had a positive impact on Virginia’s ability to identify and treat people with HIV.

This Committee is looking into reauthorizing the Ryan White CARE Act this year

and I think it is timely to look at how minority populations are currently impacted

by the way the Ryan White Act distributes funds.

I’m also interested in learning more about minority health professional education

programs. GAO reported in the past that there have been some problems ensuring

that funds allocated for minority health education are adequately targeting the minority health professionals they were designed to help.

I hope as we consider enhancing programs for minority populations, we make a

full assessment of the programs that exist today, how they are working in meeting

10

their goals and how they will coordinate with the new programs proposed in this

legislation.

While I understand that the Administration does not have an official position on

this legislation yet, I’m hopeful that the Administration will be able to provide us

with their position soon.

I thank the Subcommittee Chairman for holding this hearing. And I welcome all

our witnesses today. I appreciate so many of my colleagues taking time out of their

day to testify at this hearing and I look forward to receiving all the witnesses testimony.

PREPARED STATEMENT OF HON. TED STRICKLAND , A REPRESENTATIVE IN CONGRESS

FROM THE STATE OF OHIO

Mr. Chairman, I want to thank you for holding this hearing today on what I think

is one of the most important and most overlooked issues in health care. I am thankful that we are pursuing this issue, and I certainly hope that the subcommittee and

the full committee will move this legislation forward as quickly as possible.

I am struck and saddened by the findings reported in HR 3250: that for almost

every serious or life-threatening disease, minorities are at increased risk for contracting that disease and dying from it. Cancer, infant mortality, SIDS, cardiovascular disease, hypertension, diabetes and HIV all confront minority ethnic

groups with greater ferocity than the white population. And we know some of the

reasons for this deadly disparity: lack of health insurance, low income, lack of access

to primary care physicians and specialists, geographic isolation, low literacy levels,

and the list goes on.

These are some of the same demographic characteristics that describe the rural

Appalachian population that I represent, and, not surprisingly, many of the same

disparities in health status exist among the poor, white population of Appalachia.

In fact, research done in Kentucky shows that, among the Appalachian white population, incidence rates for cervical cancer and lung cancer are significantly greater

than the rates for those cancers among the white population as a whole. In fact,

the cancer incidence rates among white Appalachians in Kentucky is much more

closely aligned with the rates for black individuals in Kentucky.

That this disparity exists at the end of the twentieth century is cause for grave

concern and immediate action.

But I am concerned that our federal institutions charged with health care research have not been doing all they can to eradicate this disparity. Clearly, this is

a problem that has many complex causes and even more complicated solutions, a

problem that cannot be solved overnight. But I have read with great concern some

of the discoveries of the Institute of Medicine’s report, ‘‘The Unequal Burden of Cancer.’’ In this study, the IOM reports that ‘‘while NCI (National Cancer Institute) reports that it allocated $124 million to research and training programs relevant to

ethnic minority and medically underserved groups in fiscal year 1997, the committee believes that the actual figure allocated for these groups is only slightly more

than $24 million, or approximately 1% of the total NCI budget.’’

I hope that this hearing on HR 3250 will be the beginning of a process where we

will enact legislation that will correct these inequities for all Americans.

PREPARED STATEMENT OF HON. JOHN D. DINGELL, A REPRESENTATIVE IN CONGRESS

FROM THE STATE OF MICHIGAN

Mr. Chairman, thank you for holding today’s hearing on the important issue of

disparities in health care amongst the diverse ethnic groups that comprise our nation. I regret that floor action on the Conservation and Reinvestment Act precludes

my delivery of this statement in person.

America’s health care enterprise has three responsibilities: 1) providing preventive health services and treating disease; 2) conducting biomedical research; and 3)

training health care professionals to meet the needs of today, and anticipate the

needs of tomorrow. Unfortunately, minority populations have been unequally and

inadequately recognized and represented in all three health-related activities. H.R.

3250 makes tremendous strides on all three fronts.

As you are about to hear from the Surgeon General, Dr. David Satcher, ‘‘as we

look at the state of minority health in America, we are really looking at the future

of our nation’s health.’’ The future of our nation’s health will be influenced, in large

measure, by advances in genetic medicine, a subject that will resonate through

much of the expert testimony we will hear today. The human genome project has

already shown us that there is greater genetic variability within ethnic groups than

11

between ethnic groups. Research is now on the brink of unlocking the keys to ethnic

differences in susceptibility and resistance to such common health problems, such

as heart disease, diabetes, cancer, and stroke. These discoveries will allow us to target screening, treatment, and prevention more effectively, thereby minimizing

health disparities.

As the world’s leader in biomedical research, we must supplement our new technologies with a workforce of culturally competent physicians and health professionals. H.R. 3250 addresses this by calling for the development of educational tools

and programs that will sensitize health professionals to a variety of health belief

systems and enhance provider communication skills in areas ranging from simple

health history-taking and education to recruiting and enrolling members of minority

groups in appropriately designed clinical trials.

This year’s census, for the first time in our nation’s history, is expanding the

available data on the ethnic origins of Americans from the five categories formerly

used. I am optimistic that the availability of this new, expanded data about target

populations will help close the information gaps we will hear about from Dr. Fridell

on behalf of the Institute of Medicine, as well as other witnesses. The Institute of

Medicine’s study, ‘‘The Unequal Burden of Cancer: An Assessment of NIH Research

Programs for Ethnic Minorities and the Medically Underserved,’’ provides a compelling brief for legislation such as H. R. 3250.

This hearing also provides an opportunity to thank our nation’s community, migrant and homeless health centers, along with the other organizations that comprise

America’s primary healthcare safety net, for the important role they play in providing culturally-sensitive health care to over seven million minority individuals.

Without this important resource, many of our nation’s poorest citizens would have

no access to health care, and the disparities we are discussing here today would be

even worse.

Last year I fought hard to have the Balanced Budget Refinements Act include

some relief for community health centers from the phase-out of the Medicaid costbased reimbursement, but the job is only partially done. One way to sustain the

vital safety net the community health centers provide to minority communities

would be for this Committee to pass H.R. 2341, the Safety Net Preservation Act,

which assures them a stable Medicaid funding system. I hope this can be accomplished this session.

In closing, I urge us to move forward with H.R. 3250. This legislation will

strengthen the health care safety net for minority residents, their families, and underserved communities, by translating the enhanced research discoveries provided

for in this bill into improved health care outcomes. Moreover, it is a bold step forward in marking the next decade with the highest achievable level of health care

fairness in primary medical care and treatment, biomedical research, health professional education, and public awareness, for all citizens.

Mr. COBURN. With that, I would like to recognize our co-members

in the House and the Honorable Bennie Thompson.

Mr. THOMPSON. Thank you, Mr. Chairman.

I would like to compliment you and this committee for conducting this hearing. It is obviously the first step in the right direction to address the health care inequities in this country.

I also want to compliment Mr. Lewis, Mr. Jackson, Mr. Watts

and other members who have also co-sponsored this legislation. It

is long overdue. As you will hear from my colleagues, and as you

have heard from my esteemed members of the committee, we have

a problem. This is America, this is the greatest country in the

world.

The statistics quoted to you earlier today should cause all of us

great concern. We can put people on the moon, we can do a number

of things, but yet we have absolutely too many people of color suffering and dying needlessly in this country. For that reason, we offered this legislation and feel that reasonable people will, in fact,

support it.

I can give you all the demographics but we know the story. We

have to fashion and craft a solution. We see this legislation as one

effort in crafting that solution.

12

The district I represent has 24 counties. All 24 counties I represent are medically underserved. We need help. This legislation

addresses that and I look forward to the debate and discussion as

we move this legislation forward.

Mr. COBURN. The gentleman from Georgia, Mr. Lewis.

STATEMENT OF HON. JOHN LEWIS, A REPRESENTATIVE IN

CONGRESS FROM THE STATE OF GEORGIA

Mr. LEWIS. Thank you, Mr. Chairman.

I want to commend you, Mr. Chairman and members of the committee, for holding this hearing on such an important piece of legislation, H.R. 3250, the Health Care Fairness Act. I also want to

commend Representatives Watts, Norwood, Thompson, Jackson,

Rodriguez and Underwood for their commitment to making this bill

a top priority. They are my friends and they are my colleagues and

they care. I am glad to be here with them today.

I especially want to thank Dr. Sullivan and his staff and the

many others concerned about minority health for all of the help

they have given me and my staff in developing and promoting this

legislation.

As a member of the Ways and Means Subcommittee on Health

I have long been committed to eliminating health disparities. It is

my hope that with today’s focus on H.R. 3250, we can move quickly

to eliminate those disparities. We all know how important this

issue is.

Over the past few decades we have made great advances as a

Nation in science and medicine. However, all of our citizens have

not shared in the benefits of these advances. Minority populations

have higher rates of death from cancer and health disease, as well

as a higher rate of diabetes and other severe health problems. In

fact, in many instances, minorities are not offered or given access

to treatment. That is why we introduced the Health Care Fairness

Act, a bipartisan bill supported by members of the Hispanic Caucus, the Asian Pacific Island Caucus and all members of the Congressional Black Caucus.

H.R. 3250 is also supported by the American Hospital Association, the National Medical Association, the National Asian Women’s Health Organization, the Association of Minority Health Professional Schools, Association of Black Cardiologists, American Association of Medical Colleges, National Association of Community

Health Centers, and many other organizations.

The Health Care Fairness Act includes an increased commitment

to research minority health, improved data systems, culturally sensitive health care delivery and public awareness of the existence of

minority health disparities.

We must make the commitment, the necessary commitment to

eliminate minority health disparities. We must do it for the sake

of not just the minority community but for the sake of our Nation.

By focusing attention and Federal resources on this problem, the

Health Care Fairness Act gives us a chance to bridge the health

care gap.

Mr. Chairman and members of the committee, I ask for your

commitment and your help to not only mark up H.R. 3250, but to

pass this bill before the end of the 106th Congress. I look forward

13

to working with you in a bipartisan manner to make sure we pass

H.R. 3250.

Thank you very much.

Mr. COBURN. Mr. Jackson?

STATEMENT OF HON. JESSE L. JACKSON, JR., A REPRESENTATIVE IN CONGRESS FROM THE STATE OF ILLINOIS

Mr. JACKSON. I want to thank you for the opportunity to discuss

with you the issue of minority health research at NIH. I am very

pleased to be joined by my colleagues, Mr. Rodriguez, Mr. Underwood, Mr. Lewis and Mr. Thompson, on this panel to share ideas

and concrete steps this Congress may take to address health disparities in this country between blacks and other ethnic minorities

in the general population.

In this time of national economic prosperity and in particular,

double digit growth for the National Institute of Health, Chairman

Porter has set a single goal of increasing appropriations for NIH

by 15 percent every year.

I am disappointed to report that the health status gap among

blacks and other underserved populations is getting worse and not

better. In my view, the National Institute of Health could, and

should, be doing more to address health care needs of all Americans.

At the beginning of the 106th Congress, I was very pleased to be

appointed to the Appropriations Committee and to its Labor,

Health and Human Services and Education Subcommittee. Congressman Lewis Stokes of Ohio made gigantic steps and strides in

improving minority health during his long and distinguished service on the panel. I hope to make a similar contribution.

One of the many benefits of serving on the subcommittee is the

opportunity to carefully review the program activity and priorities

of the Institute and to question the health care professionals and

researchers that carry out this vital work.

In fact, the subcommittee held more than 40 hearings just this

year alone and about 20 half-day sessions on which those hearings

were dedicated to the oversight of NIH. I was privileged to attend

almost all of those sessions this year as well as last year.

In January 1999, I had the privilege of meeting with Mr. Louis

Sullivan, the former HHS Secretary and current President of the

Morehouse School of Medicine. He shared with me testimony he

gave before the Senate Labor Health and Human Services Appropriations Subcommittee concerning the Institute of Medicine’s report that demonstrated a disturbingly low level of support for cancer research among minorities through the National Cancer Institute.

The cornerstone recommendation made by Dr. Sullivan in his

testimony was to elevate the existing NIH Office of Research on

Minority Health to Center status. What became increasingly clear

across my inquiry at NIH was that the problem was not specifically

centered in the National Cancer Institute, that amongst its 23 institutes, three centers and three offices, a general lack of coordination on these fundamental problems was clear and existed.

He contended that the existing structure in NIH did not adequately address or prioritize the issue of health disparities. After

14

asking scores of questions to the NIH Director and the Directors

of the Institute and Centers during last year’s hearings about these

disparities, I became more convinced than ever that Dr. Sullivan

was right, the Office of Research on Minority Health needed to be

elevated to center status.

Consequently, I worked with Dr. Sullivan and other health care

professionals to fashion a bill which I also support with Congressman Thompson and Congressman Lewis. The product of that bill,

H.R. 2391 or Title I of 3250 which I introduced on June 30, 1999.

In plain terms, the bill provides the Director of the Center a seat

at the table when NIH Institutes and Center Directors meet to discuss NIH policy and priorities. Presently, the Office of Research on

Minority Health, when all of the Directors and Institutes meet, is

not even in the room. They do not have a seat at the table to coordinate across the 23 Institutes, three Centers and three Offices,

general coordination on these critical issues. The current Director

does not attend these meetings.

Second, calls for health status disparities to be prioritized at NIH

through the establishment of an NIH-wide strategic plan for health

disparities with the Center playing the key role in that strategic

plan.

Third, it establishes a grantmaking authority for the National

Center which the office presently does not have. That is, researchers who might pursue issues such as health disparities and diabetes, cancer research or any other necessary and needed form of

study, there presently is no grantmaking authority in that office to

encourage researchers to study these various disparities.

Right now, the office director cannot spend his own budget unless an Institute Director allows him to fund a grant through his

or her institute. This is unacceptable.

Mr. COBURN. Can you summarize, Mr. Jackson?

Mr. JACKSON. I am just one paragraph away, sir.

Fourthly, H.R. 3250 provides institutional support for those minority health professional schools which have a history and mission

to serve and train minority health professionals and conduct research on health disparities. If we are ever going to solve the problem of health disparities, institutions which have a mission to solve

these problems must be strong and viable.

I urge the subcommittee to move forward on legislation that

would elevate the Office of Research on Minority Health to a Center. Elevating this office would better coordinate these efforts at

NIH and therefore, save lives and families from being strapped by

illness and anguish.

Together we can ensure that health care needs of all Americans

are adequately addressed.

Thank you, Mr. Chairman, Ranking Member Brown and members of the subcommittee for this opportunity to present my views.

[The prepared statement of Hon. Jesse L. Jackson, Jr. follows:]

PREPARED STATEMENT OF HON. JESSE L. JACKSON, JR., A REPRESENTATIVE IN

CONGRESS FROM THE STATE OF ILLINOIS

Mr. Chairman, Ranking Member Brown and Members of the Subcommittee,

thank you for the opportunity to discuss with you the issue of minority health research at the National Institutes of Health (NIH). I am very pleased to join my colleagues on this panel to share ideas and concrete steps this Congress may take to

15

address the health status disparities in this country between blacks and other ethnic minorities and that of the general population.

In this time of national economic prosperity, and double digit growth for the National Institutes of Health, I am disappointed to report that the health status gap

among blacks and other underserved populations is getting worse, not better. In my

view, The National Institutes of Health could and should be doing more to address

the health care needs of all Americans.

At the beginning of the 106th Congress, I was very pleased to be appointed to

the Appropriations Committee and to its Labor, Health and Human Services, and

Education Subcommittee. Congressman Louis Stokes of Ohio made gigantic strides

in improving minority health during his long and distinguished service on the panel,

and I hope to make a similar contribution.

One of the many benefits of serving on the subcommittee is the opportunity to

carefully review the program activity and priorities of the institute and to question

the health care professionals and researchers that carry out such vital work. In fact,

the Subcommittee held more than 40 days of hearings just this year, about 20 halfday sessions of which were dedicated to the oversight of NIH. I was privileged to

attend almost all of those sessions this year as well as last year.

In January of 1999, I had the privilege of meeting with Dr. Louis Sullivan, the

former HHS Secretary and the current President of Morehouse School of Medicine.

Dr. Sullivan shared with me the testimony he gave before the Senate Labor-HHS

Appropriations Subcommittee concerning an Institute of Medicine Study (IOM) that

demonstrated a disturbingly low level of support for cancer research among minorities through the National Cancer Institute. The cornerstone recommendation made

by Dr. Sullivan in his testimony was to elevate the existing NIH Office of Research

on Minority Health to ‘‘Center status.’’ He contended that the existing structure at

NIH did not adequately address or prioritizing the issue of health disparities.

After asking scores of questions to the NIH Director and the Directors of the Institutes and Centers during last year’s hearings about these disparities, I became

more convinced than ever that Dr. Sullivan was right—the Office of Research on

Minority Health needed to be elevated to ‘‘Center’’ status.

Consequently, I worked with Dr. Sullivan and other health care professionals to

fashion a bill that would do just that. The product of those efforts is H.R. 2391,

which I introduced on June 30, 1999. 1 am pleased to report that this bill has 87

bipartisan co-sponsors including Reps. Charlie Norwood, Nathan Deal, Sherrod

Brown and Ed Towns of this subcommittee.

The bill, in plain terms would:

1) Provide the director of the Center a seat at the table when NIH Institutes and

Center directors meet to discuss NIH policy and priorities.

Currently the director of the office does not attend those meetings.

2) Calls for health status disparities to be prioritized at NIH through the establishment of an NIH-wide strategic plan for health disparities, with the Center playing a key role in the strategic plan.

3) Establishes direct grant making authority for the National Center, guided by

the work and scientific expertise of a national advisory council.

Right now the office director can’t spend his own budget unless an Institute director allows him to fund a grant through his or her Institute.

4) Provides institutional support for those minority health professions schools

which have a history and mission to serve and train minority health professionals

and conduct research on health status disparities. If we are ever going to solve the

problem of health disparities, institutions which have a mission to solve these problems must be strong and viable.

Mr. Chairman, I urge this Subcommittee to move forward on legislation that

would elevate the Office of Research on Minority Health to a National Center. Elevating this office will help to save more lives and families from being sapped by illness and anguish. Together, we can ensure that the health care needs of all Americans are adequately addressed.

Thank you Mr. Chairman, Ranking Member Brown and members of the Committee for the opportunity to present my views.

Mr. COBURN. Mr. Underwood?

STATEMENT OF HON. ROBERT A. UNDERWOOD, A DELEGATE

IN CONGRESS FROM GUAM

Mr. UNDERWOOD. Good afternoon, Mr. Chairman, Ranking Member Brown, distinguished members of the committee.

16

Thank you for the opportunity to speak before you today on a

matter of great importance to us in this room, our health. I am

here in my capacity as Chairman of the Congressional Asian Pacific Caucus and join in strong support with other members of this

panel to urge the committee’s support of H.R. 3250.

The Asian American-Pacific Islander community is the most ethnically and racially diverse community in our country. AAPIs are

comprised of both immigrant populations as well as indigenous

populations from the Pacific Islands. Census data reports that

Asian American-Pacific Islander community is the fastest growing

community in our country today. We can expect to grow from a

population of about 10 million or 5 percent of the total U.S. population to 10 percent by the year 2050.

Asian Americans and Pacific Islanders are often labeled as the

model minority with health or social problems. This is a myth and

a gross misrepresentation of the situation. Within this population

alone, there exists divergent economic and academic achievement

rates and ethnically and racially diverse cultures.

Large subpopulations of East Asians and South Asians often

skew the reality for small sub populations of Southeast Asians and

Pacific Islanders.

Recent Department of Health and Human Services data shows

that AAPI has experienced the highest rates of tuberculosis and

Hepatitis B in the country. In fact, cervical cancer incidences are

five times higher for Vietnamese women. Liver cancer among Vietnamese is found to be 11 times higher than the general population.

Native Hawaiians have the second highest mortality rate to lung

cancer. Diabetes affects tomorrow’s natives of Guam at five times

the national average and infant mortality rates in the U.S. and insular Pacific areas are more than double the national average.

It is clear that the face of America has become increasingly diverse as its minority populations continue to grow and as our minority populations increase, so will the complexity of our health situation, which means that we need innovative approaches to deal

with this issue.

The Health Care Fairness Act lays out a play to reducing racial

and ethnic disparities in health care and health care outcomes by

elevating the Office of Research on Minority Health to create a center for health disparities research at the National Institutes of

Health. We will significantly increase the support of research on

health care disparities, improving data collection relating to race

and ethnicity and funding major increases in minority medical

training and curriculum development. The NIH needs a strong and

effective coordinating body to focus research and awareness on the

health care needs of all minorities.

There is also much room for improvement in the methods of data

collection. Within the Asian American and Pacific Islander community there exists scant local and Federal data to document the

needs of our communities. It is only with the emergence of more

recent and improved data collection that we are beginning to realize the unique needs of the AAPI communities.

The Health Care Fairness Act represents a comprehensive, bipartisan effort to effectively address the health care needs of all

our communities. As Chairman of the Congressional Asian-Pacific

17

Caucus, I strong urge your support and commitment to bridge the

gap which denies minority Americans from receiving fair access to

health care, health care that has meaning in their cultures and

their lives, and other quality of life services.

I join with my colleagues on this panel to urge you to move forward with this bill.

Thank you very much.

[The prepared statement of Hon. Robert A. Underwood follows:]

PREPARED STATEMENT OF HON. ROBERT A. UNDERWOOD, A DELEGATE FROM GUAM

Good afternoon, Chairman Bilirakis and Members. Thank you for an opportunity

to speak before the Committee today on a matter of great importance to many of

us in this room—our health. I am here in my capacity as Chairman of the Congressional Asian Pacific Caucus and join in strong support with my fellow colleagues on

this panel to urge the Committee’s support for H.R. 3250, the Health Care Fairness

Act.

The Asian American and Pacific Islander (AAPI) community is the most ethnic

and racially diverse community in our country. It is also the most heterogenous

community. AAPIs are comprised of both immigrant populations (including East

Asians from Japan and China, Southeast Asians from Vietnam, Cambodia, and

Laos, and South Asians from India) and indigenous populations of Pacific Islanders

(Native Hawaiians, Chamorros from Guam and the Commonwealth of the Northern

Mariana Islands, and American Samoans). Census data reports the Asian American

and Pacific Islander community is the fastest growing community in our country

today. We expect to grow from a population of 10.4 million or 5 percent of the total

U.S. population to 10 percent by 2050.

Asian Americans and Pacific Islanders are often labeled as the ‘‘model minority’’

with few health or social problems. This is a myth and a gross misrepresentation

of AAPIS. Within this population alone, there exists divergent economic and academic achievement rates and ethnic and racially diverse cultures. The large subpopulations of East Asians and South Asians often skew what the reality is for the

smaller subpopulations of Southeast Asians and Pacific Islanders, who traditionally

do not parallel the same rates of the larger subpopulations.

Department of Health and Human Services data shows:

• AAPIs experience the highest rates of tuberculosis and Hepatitis B in the country;

• Although new cancer cases declined for all racial and ethnic groups from 1990 to

1995, the rates for AAPI women remained level;

• In fact, cervical cancer incidences are 5 times higher for Vietnamese women;

• Liver cancer among Vietnamese is found to be 11.3 times higher;

• Chinese Americans have the highest rate of nasopharyngeal cancer in the country;

• Native Hawaiians have the second highest mortality due to lung cancer;

• Diabetes affects Chamorros at 5 times the national average; andInfant mortality

rates in the U.S. Pacific insular areas are more than double the national average.

It is clear that the face of America is becoming increasingly diverse as its minority

populations continue to grow. And, as our minority populations increase, so will

complexity of our health situation.

The Health Care Fairness Act lays out a plan to reduce racial and ethnic disparities in health care and health care outcomes. By elevating the Office of Research

on Minority Health to create a Center for Health Disparities Research at the National Institutes of Health (NIH), we will significantly increase the support for research on health disparities, improving data collection relating to race and ethnicity

and funding major increases in minority medical training and curriculum development. The NIH needs a strong and effective coordinating body to focus research and

awareness of the health care needs of all minorities.

There is much room for improvement to the methods of data collection. Within

the Asian American and Pacific Islander community, there exists scant local and

federal data to document the needs of our communities. It is only with the emergence of more recent and improved data collection are we beginning to realize the

needs of our AAPI communities. This lack of data is our greatest impediment to addressing health disparities. We support the provision to comprehensively study and

conduct data collection methods that accurately report the health care status of our

communities. I also ask that the National Academy of Science ensure that data collected for Pacific Islanders be disaggregated as directed in the Office of Management

18

and Budget Policy Directive 15, which was revised in October 1997 and created a

new category for ‘‘Native Hawaiian or Other Pacific Islander.’’

The Health Care Fairness Act represents a comprehensive, bipartisan effort to effectively address the heath care needs of all our communities. As Chairman of the

Congressional Asian Pacific Caucus, I strongly urge your support and commitment

to bridge the gap which denies minority Americans from receiving fair access to

health care and other quality of life services. I join with my colleagues on this panel

to urge you to move this bill forward.

For many years, we have fought this battle in the matter of education. We have

acknowledged that there is a strong necessity to address the educational needs of

minority communities to level the playing field for all Americans. Now is time to

level the playing field so that all Americans, have fair and equal access to health

care and health outcomes. I urge you’re your strengthened commitment to support

comprehensive strategies like the Health Care Fairness Act to address health disparities among ethnic and minority groups. I urge the Committee move this bill forward to markup and passage before we adjourn the 106th Congress.

The Committee’s record in addressing the health needs of all minority communities is to be commended. I would like to thank the Committee for its continuing

support. I appreciate the opportunity to testify and will remain for any questions.

Mr. COBURN. Mr. Rodriguez?

STATEMENT OF HON. CIRO D. RODRIGUEZ, A

REPRESENTATIVE IN CONGRESS FROM THE STATE OF TEXAS

Mr. RODRIGUEZ. Thank you, Mr. Chairman.

I want to also thank Mr. Bennie Thompson, Congressman Lewis,

Congressman Jackson and Congressman Underwood for their efforts in the area of health care.

Let me say the Hispanic Caucus, as of last year, had some hearings and one of the things we found was that there was five areas

of concern that we had. One of those was access to health care. As

you have indicated, Mr. Chairman, it is not only minorities in that

areas, one of the things we found was there is a disparity in terms

of Hispanics, that one are one of the largest uninsured groups but

beyond that, anyone who is working for a small company, who is

not working for government, not working for a major corporation

but is making money, doesn’t qualify for Medicaid, finds themselves without access to health care. The need for us to do something in that area is key.

Second, we found that the area of funding, when it comes to Hispanics, there is definitely a disparity. We find a lot of community

organizations do not have access to those services and there is a

need for us to be more responsive in terms of our governmental entities in reaching out.

Third, we found that cultural competency information is key. I

will give you an example of when a doctor testified to the fact that

we had a woman who was told she was positive when it came to

HIV and in Espanol when you say ‘‘positivo,’’ it is like in English,

you think everything is okay and that is what she thought. Later

she had a child and found both were HIV positive. That was unfortunate.

We also found that there is a lack of representation in terms of

the health profession in terms of Hispanics in all fields of the

health profession. The need for us to make sure that we hold not

only agencies accountable but the schools to allow individuals to be

able to have that opportunity, to meet some of the needs of our constituents out there.

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We found there was a lack of data collection and the need for us

to be able to get some data, for example, in finding out why it is

that Hispanics are disproportionately hit with diabetes and a variety of other issues.

Those are the five areas we found were critical. This bill allows

us an opportunity to move forward in some of those areas and we

are optimistic. We are pleased that you are having this hearing to

allow us the opportunity to be able to do that.

There is no doubt that there is a need for us to zero in on these

areas and make to make sure that we prioritize those items. The

individuals you see before you are eager to move forward.

Thank you for allowing us this opportunity.

[The prepared statement of Ciro D. Rodriguez follows:]

PREPARED STATEMENT OF HON. CIRO D. RODRIGUEZ, A REPRESENTATIVE IN

CONGRESS FROM THE STATE OF TEXAS

Good morning and thank you for the invitation to testify before the Commerce

Subcommittee on Health. It is an honor to be here with my colleagues to testify on

the health needs of our communities. As representatives of districts with diverse

needs we welcome the opportunity to join you in efforts to improve not only the

health status of our communities but also of all Americans.

THE CONGRESSIONAL HISPANIC CAUCUS

I currently chair the Congressional Hispanic Caucus Health Task Force. As you

may know, the CHC is an informal group of 18 Hispanic Members of Congress dedicated to voicing and advancing issues affecting Hispanic Americans in the United

States and the insular areas. We have nine task forces which tackle issues ranging

from immigration to economic development. It is primarily out of the CHC’s Health

Task Force that we work to address health concerns affecting the Latino community.

As Members of Congress, it is our individual responsibility to educate our colleagues about issues of importance to each of the districts we represent. As Members of the CHC, this responsibility increases since we speak for the needs and interests of many more people than those living in the 18 districts we represent. To

achieve our collective goals of educating our colleagues and promoting legislation,

we compile a list of budget and legislative priorities each year. These priorities serve

as a guideline for our colleagues to inform them on issues of importance to their

own constituents.

The CHC health agenda is aimed at meeting the needs of our growing and diverse

community. There are nearly 30 million Hispanics currently in the United States,

constituting approximately 11% of the entire population. By the year 2025 our numbers are expected to increase to nearly 20% of the U.S. population, making Hispanics the largest minority group in the country. The origins of our current population varies: approximately 64%, are Mexican, 14% Central or South American,

11% Puerto Rican, 4% Cuban, and the remaining are from mixed origins. Within

these sub-populations we find unique health needs that vary from community to

community and neighborhood to neighborhood.

During this 106th Congress, the CHC as a caucus has followed numerous issues

related to health care. We worked on issues that range from the clarification of immigrants’ ability to enroll in programs such as the Children’s Health Insurance Program (CHIP) and Medicaid without jeopardizing their immigration status to participation in events to highlight cultural and ethnic issues related to the delivery of

mental health services. Some of the legislative initiatives sponsored by CHC Members include proposals to make health care available to legal immigrants, increase

health care access in minority neighborhoods, and improve generally the quality of

patient care and rights.

HEALTH DISPARITIES AND THE HISPANIC COMMUNITY

Addressing health disparities is a priority for the Hispanic Caucus. In September

1999, our caucus sponsored Hispanic Health Awareness Week here on Capitol Hill.

This effort included a series of hearings sponsored by the CHC on Hispanic health

disparities that focused on three areas: diabetes, HIV/AIDS, and mental health. The

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purpose of the hearings was to gather information from the community and educate

our colleagues here on Capitol Hill about the unique health needs of Latinos.

Although the hearings focused on the impact of specific diseases and highlighted

ways to deal with these particular problems, they also provided a broader view of

the challenges that we must meet to effectively address the health care needs of

Hispanic Americans and all communities of color. These challenges include:

• Access to Health Care. Hispanics constitute 1⁄3 of the uninsured population in the

United States, which results in large numbers of patients being forced to delay

or avoid health care until the problem becomes particularly acute or an emergency. • Funding. Community based organizations that serve the Latino community require additional resources to strengthen existing programs and develop new initiatives.

• Culturally Competent Information. Culturally inappropriate, difficult to understand and monolingual, health related information prohibits Latinos from making educated decisions about their well-being and health care options.

• Representation of Latino Health-Care Professionals. Latinos are under-represented

in the health professions, which increases the barriers related to culturally competent education programs, messages and health care delivery.

• Data Collection. Data collected at state and federal levels must be adapted and

improved to reflect the needs of the growing and diverse Hispanic population.

The findings compiled from our hearings present a grim reality of the health status of the Latino community. Some of the alarming examples of these problems are:

• type 2 diabetes impacts Latinos at a rate approximately twice that of the nonHispanic population;

• retinopathy, a debilitating eye disease and a leading complication of diabetes, is

80% higher among Mexican-Americans than among non-Hispanic whites;

• 20% of new AIDS cases occur among Hispanics,

• in 1997, AIDS was the third leading cause of death among Hispanics between 25

and 44; and

• Hispanic girls lead the nation in the rates of suicide attempts, alcohol and drug

abuse.

These findings are specific to the Hispanic community but the disparity exists in

all communities of color whether it is diabetes, HIV/AIDS, cancer, or mental health.

We share the common bonds of despair, fear, and hope that in working together we

will not reduce health disparities but rather eliminate them within our lifetime.

The CHC has compiled the information from our hearings into a report that has

been officially released. Although we have provided a short summary of the findings

and recommendations outlined in our report, we respectfully submit a copy of this

report for the committee’s review.

THE HEALTH CARE FAIRNESS ACT—ADDRESSING HEALTH DISPARITIES

The recommendations presented during our hearings offer options to improve the

health care status of Latinos and all Americans. These recommendations included

funding for existing programs, genetic research studies to establish why Hispanics

are more prone to developing Type 2 diabetes, and adequate representation of Hispanic health care professionals through culturally competent medical and health

profession education. Many of the issues raised during the hearings would be addressed through the implementation of H.R. 3250, the Health Care Fairness Act,

specifically through the research, data collection and the proper education of our

health professionals.

Research

The research component to addressing health disparities plays a critical role for

our communities. For example, I mentioned before that Hispanics suffer disproportionately from diabetes and in particular Type 2 diabetes. Type 2 diabetes accounts

for 90 to 95 percent of diabetes cases nationwide, and it is the most common form

in the Hispanic community. With these statistics on just one disease, many wonder

why Hispanics are more prone to acquire diabetes.

The proposal within this legislation to establish the National Center for Research

on Minority Health and Health Disparities at the National Institutes of Health

would address this and many other questions, by working with biomedical institutions, community based agencies, and nonprofit entities that target all minority

communities in the United States. Through the Center, we would be able to establish consistent federal support for issues that affect Hispanics and other communities, as well as hopefully include Hispanics in the medical and health services research. Creating this research pipeline for Hispanics and other minorities is key to

21

ensuring that the health care needs of all minorities will always be on the radar

screen at places like the NIH.

These two components go hand in hand in addressing health disparities. If we are

to research the specific health needs of minorities communities we must provide opportunities for minorities to be included in the process every step of the way. This

includes creating the research pipeline for Hispanics and others of color to become

intimately involved in the research process. Along with the loan forgiveness in this

section of the legislation, we would advocate aggressive recruitment of all minorities

that are under-represented in biomedical research fields. It is our hope that through

this legislation, the Center would be able to play a leadership role in increasing

NIH’s focus on domestic health disparities that have long been ignored.

Data Collection

Knowing where the health problems are within all of our communities is one of

the greatest challenges we face in addressing health disparities. The lack of specific

and accurate data on the health and medical needs of Hispanics is particularly challenging given our great diversity. Currently, most data is collected and segregated

using Hispanic or Latino without any subdivisions. For example, Mexican Americans may be more prone to diabetes while Cubans may not. Central and South

Americans may be more prone to cardiovascular diseases but Puerto Ricans may

not. This information is not necessarily available because not all current systems

collect along sub-population lines. Accurate data collection with sub-divisions win

allow us to target precious resources to the communities in need while at the same

time predicting health outcomes.

The issue of data collection is a challenge acknowledged by the Department of

Health and Human Services. The Healthy People program has worked to address

data collection short falls by establishing critical baseline numbers on more than

just the Hispanic community and various subpopulations. However, improved collection and use of standardized data to identify all high risk populations and monitor

progress will be needed if we are to make any true strides in eliminating health

disparities.

The study proposed in the legislation will allow us to move forward with HHS on

furthering data collection efforts and will provide Congress with recommendations

on what more can be done. With this study we hope to provide the necessary evidence on the need for strengthened data collection efforts and eventually provide

targeted resources to HHS to achieve this goal.

Cultural Competency

An overwhelming barrier to accessing health care especially for the Hispanic community has been the ability of health professionals to adequately communicate with

patients. During the Hispanic Health Awareness hearing, Dr. Barbara Naranjo told

a story of a woman in South Texas who was told by a health clinic doctor that her

HIV test was positive, or as it was told in Spanish ‘‘positivo.’’ No further explanation

was given to the woman about what positive or ‘‘positivo’’ meant, therefore she went

on with her life, without treatment and critical services. Nearly a year later, Dr.

Naranjo was visited by the woman who by that time was pregnant. When an HIV

test was done and found to be positive, Dr. Naranjo spoke to the woman about the

disease and what it meant. The woman had no idea that she was diagnosed with

a life threatening disease that could be transferred to her baby. Nine months later,

the baby was born with HIV, something that could have been avoided if the mother

had had the disease properly explained to her along with the options in treatment

she could receive.

No matter how heart breaking this story is, it is not uncommon. Millions of individuals who lack the basic understanding of medical ‘‘lingo’’ are unable to make informed decisions on what is the best treatment for their diagnosis. Many of these

barriers in communication may be eliminated by increasing awareness through cultural competence training for all health professionals and increasing the presence

of minorities in all the health profession fields.

Providing cultural competence training in health professionals education curriculum is urgently needed, especially given the tremendous diversity in our population here in the United States. By educating our health professionals on how to

deal with the various traditions and cultures within our communities we can be assured that services will be more accessible and effective in reaching communities

in need.

Hispanics in general are less likely to seek services because they lack health insurance. Hispanics are also less likely because of the difficulties in navigating the

health care system. For instance, hospitals or clinics commonly do not have health

professionals that can only speak English. In some cases hospitals have been known

22

to bring in janitors or other support staff to translate to a patient but not necessarily communicate. All too often we mistake translation for effective communication and this is especially true in the health field. Just because we have spoken to

a patient in Spanish or given them a translated document, does not necessarily

mean they understand better. Time, patience, and skills acquired from quality cultural competence training must be used in communicating with patients.

Effective and structured curriculum on cultural competence, as suggested within

H.R. 3250, would resolve many of the obstacles our communities face on a day to

day basis. To further help many of those in the Hispanic community, I would hope

we could embrace innovative curriculae that deal with the complex needs of communities of color.

CONCLUSION

All of the areas I have focused on are aimed at addressing the health disparities

within our communities, and more importantly, in improving access to quality

health care. Hispanics are the largest uninsured minority population at nearly 40%

without health insurance. I ask that this Committee take into consideration the

health needs of millions of Americans as we work on the health disparities within

our communities.

For far too long we have failed to truly address the needs of communities disproportionately suffering from health disparities. H.R. 3250 is the first step we must

all take in finally addressing the health care needs of a large segment of our population. If we fail to act on this legislation we fail far too many people. Do not forget

that these individuals are not faceless or nameless. They are the people we have

been elected to represent. Let us do our job and work to pass this legislation.

I applaud the efforts of this Committee to address minority health and the needs

of the Hispanic community. I look forward to working with you and ask that you

use the Hispanic Caucus as a resource for any future legislation the Committee may

consider. I appreciate the opportunity to testify and will remain for questions from

members of this Committee.

Mr. COBURN. The gentleman from Arizona, Mr. Hayworth.

STATEMENT OF HON. J.D. HAYWORTH, A REPRESENTATIVE IN

CONGRESS FROM THE STATE OF ARIZONA

Mr. HAYWORTH. Thank you. It is a honor to be here with you.

I am here today in my capacity as co-chairman of the Congressional Native American Caucus. I want to thank you, Mr. Chairman, for offering all of us this opportunity to testify on H.R. 3250,

the Health Care Fairness Act. I would like to commend all of you

for holding this hearing on ways to address minority health disparities and health research education and access to health care in

minority populations.

In 1976, Congress enacted the Indian Health Care Improvement

Act. The Act is one of the most comprehensive efforts by Congress

to address the health needs and health status of American Indian

and Alaska Natives. Although improvements in the health status

of American Indians and Alaska Natives have been accomplished,

the unmet health needs of this population continue to be staggering.

As indicated in recent studies by the Centers for Disease Control

and Prevention, the disparity between the health of Native Americans and the rest of the population is ever widening. Native Americans suffer the worse health status of any racial or ethnic group

in America with a diabetes rate that is three times greater than

the general population and a death rate 4.3 times greater than the

general population from complications of diabetes.

In addition, Native Americans suffer rates of heart disease two

times as high as the general population. Cancer and alcoholism are

six times the national rate. Hepatitis is two times as high as the

23

general population and tuberculosis at five times the rate of the

general population.

A stunning example of the disparity is the Gila River Indian

Community in the 6th Congressional District of Arizona whom I

represent. The community is well known to medical officials for its

shockingly high rate of Type II adult onset diabetes. According to

the World Health Organization, the Pima Indians who make up the

majority of this community’s population, have the highest known

rate of diabetes in the world. Community members are 12 times

more likely to die of diabetes and its severe complications than the

average American.

For over three decades, members of the community have been

studied by the National Institutes of Health and outside parties.

The National Institute for Diabetes and Digestive and Kidney Diseases has supported a field research station in Arizona since 1965.

Community members have been weighed, poked, prodded, x-rayed

and screened at a cost to taxpayers more than $100 million.

Based on the data obtained, NIH was able to develop new approaches to the treatment of Type I diabetes, juvenile diabetes. The

NIH research program findings failed to study the treatment prevention of Type II diabetes, the type of diabetes that affects the

very people who were used to obtain the data.

Despite three decades of research, the Type II diabetes epidemic

within the community continues to accelerate. In a disturbing development, the age of onset of Type II diabetes has been decreasing

steadily. In fact, within the community, the term adult onset diabetes is rapidly becoming a misnomer. The community also has the

largest known cluster of children with Type II diabetes in the

world.

Congress has a special trust responsibility to assure the highest

possible health status is achieved for Native Americans. Despite

the trust responsibility, Native Americans and Alaskan Natives

continue to bear a disproportionate burden of illness and premature mortality in comparison with other American populations.

The lesson to learn from the Gila experience is that tribal self

interests must be taken into consideration. Congress must look for

ways to give tribes more direct control over the prevention, intervention and treatment of serious diseases affecting their populations.

We look forward to working with the committee to develop solutions for innovative and culturally sensitive methods to address

health disparities for Native Americans and Alaska Natives.

Again, I thank the Chair and the committee.

[The prepared statement of Hon. J.D. Hayworth follows:]

PREPARED STATEMENT OF HON. J.D. HAYWORTH, A REPRESENTATIVE IN CONGRESS

FROM THE STATE OF ARIZONA ON BEHALF OF HIMSELF AND HON. DALE E. KILDEE

Mr. Chairman, good morning. As Co-chairman of the Congressional Native American Caucus, I want to thank you for giving me this opportunity to testify on H.R.

3250, the Health Care Fairness Act. I commend the Chairman and other distinguished committee members for holding a hearing today on ways to address minority health disparities in health research, education, and access to health care in minority populations.

In 1976, Congress enacted the Indian Health Care Improvement Act. The Act is

one of the most comprehensive efforts by Congress to address the health needs and

health status of American Indian and Alaska Natives. Although improvements in

24

the health status of American Indians and Alaska Natives have been accomplished,

the unmet health needs of this population continue to be staggering.

As indicated in the recent studies by the Centers for Disease Control and Prevention (CDC), the disparity between the health of Native Americans and the rest of

the population is ever-widening. Native Americans suffer the worst health status of

any racial or ethnic group in America with a diabetes rate that is 3 times greater

than the general population, and a death rate 4.3 times greater than the general

population from complications of diabetes. In addition, Native Americans suffer

rates of heart disease 2 times as high as the general population, cancer and alcoholism 6 times the U.S. rate, hepatitis 2 times as high as the general population,

and tuberculosis at 5 times as high as the general population.

A stunning example of this disparity is the Gila River Indian Community in Arizona. The Community is well-known in the medical community for its shockingly

high rate of Type 2 (adult-onset) diabetes. According to the World Health Organization, the Pima Indians, who make up the majority of the Community population,

have the highest known rate of diabetes in the world. Community members are

twelve times more, likely to die of diabetes and its severe complications than the

average American.

For over three decades, members of the Community have been studied by the National Institutes of Health (NIH) and outside parties. The National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK) has supported a field research

station in Arizona since 1965. Community members have been weighed, poked,

prodded, x-rayed, and screened at a cost to taxpayers of more than $100 million.

Based on the data obtained, NIH was able to develop new approaches to the treatment of Type I diabetes, juvenile diabetes. The NIH research program findings

failed to study the treatment and prevention of Type 2 diabetes, the type of diabetes

that affects the very people who were used to obtain the data. Despite three decades

of research, the Type 2 diabetes epidemic within the Community continues to accelerate.

In a disturbing development, the age of onset of Type 2 diabetes has been decreasing steadily. In fact, within the Community the term ‘‘adult-onset’’ diabetes is rapidly becoming a misnomer; the Community also has the largest known cluster of

children with Type 2 diabetes in the world.

Congress has a special trust responsibility to assure the highest possible health

status for Native Americans. Despite the trust responsibility, American Natives and

Alaska Natives continue to bear a disproportionate burden of illness and premature

mortality in comparison with other U.S. populations. The lesson to learn from the

Gila experience is that tribal self-interest must be taken into consideration. Congress must look for ways to give tribes more direct control over the prevention,

intervention, and treatment of, serious diseases affecting their population,

We look forward to working with the committee to develop solutions for innovative

and culturally-sensitive methods to address health disparities in Native Americans

and Alaska Natives.

Mr. COBURN. Mr. Watts.

STATEMENT OF HON. J.C. WATTS, A REPRESENTATIVE IN

CONGRESS FROM THE STATE OF OKLAHOMA

Mr. WATTS. Thank you very much for holding this hearing.

I am going to have to leave shortly after my testimony so I do

appreciate you being with me.

I would again like to thank you for holding this hearing today

concerning H.R. 3250, the Health Care Fairness Act. I would also

thank my colleagues who are present today, especially Mr. Lewis,

Mr. Norwood and Mr. Jackson and all the other members who have

championed this critical legislation.

I am also proud testifying here today is Mr. John Harley, a member of the Oklahoma Medical Research Foundation. OMRF is truly

a beacon of excellence in scientific research for the State of Oklahoma and the Nation. The scientists at OMRF play a significant

role in uncovering clues to the origin of human disease and thereby

building a biomedical industry. OMRF discoveries are helping to

lead the way in the fight against cancer, heart disease, stroke, diaVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00028 Fmt 6633 Sfmt 6602 E:\HEARINGS\64770 pfrm08 PsN: 64770
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betes, lupus and other diseases that plague mankind, and especially minorities.

Just as biomedical research is helping to address the disparities

in health, so will the Health Care Fairness Act. The Act comprehensively addresses health disparities by elevating the existing

Office of Research on Minority Health at the National Institutes of

Health to a National Center for Research on Minority Health. It

also addresses bias in health care through education and an improved data system, and strengthened public awareness.

Despite continued advances in research and medicine, disparities

in health care are an ever increasing problem and a concern. This

is evidenced by the fact that minority Americans lag behind on

nearly every health indicator including health care coverage, access

to care, life expectancy and disease rates.

Ethnic minorities and individuals in medically underserved rural

communities continue to suffer disproportionately from many diseases such as cancer, diabetes and cardiovascular diseases.

There have been numerous studies in scientific journals showing

the severity of racial and ethnic health disparities and the need for

action in order to remedy this grave problem. As previously noted,

disease rates and access to health care are two of the many different facets of disparity.

In October 1999, the Henry J. Kaiser Family Foundation found

that many studies have repeatedly documented that African-Americans were significantly less likely than whites to receive diagnostic

and surgical interventions for heart disease and stroke. Numerous

studies have also found that racial and ethnic minorities were more

likely than whites to be diagnosed with cancer at advanced stages

and less likely to receive major therapeutic intervention.

With regard to diabetes to which I lost a mother several years

ago, racial differences have been documented and the degree and

method of diabetes control.

In closing, I would like to point out the obvious. Access to quality

health care is crucial. We must all work together to see that the

health care needs of everyone, including minorities in rural populations, are met. There is no single cause of racial disparities in

health and there is no single solution but there is no doubt that

greater public awareness is mandatory if we are going to have an

impact on this problem.

Elimination of health disparities must be a higher priority. The

Health Care Fairness Act will increase our knowledge of the nature

and causes of health disparities, improve the quality and outcomes

of health care services for minority populations and aid in bringing

us closer to our mutual goal of closing the longstanding gap in

health care.

I am deeply committed to this piece of legislation and I urge all

Members of Congress to support us in our effort to rectify this inequality in health care.

Mr. Chairman, Mr Coburn, and members of the committee, I

thank you for your time and your sincere interest in addressing

this critical issue.

Mr. COBURN. Thank you.

I believe the committee is not going to be asking questions of this

panel. I do want to tell you that I think all members of the subVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00029 Fmt 6633 Sfmt 6602 E:\HEARINGS\64770 pfrm08 PsN: 64770
26

committee see the problem is real and we will be making every effort to support you in your efforts.

Mr. BILIRAKIS. Certainly, the details of the larger bill, Mr. Lewis’

and Mr. Thompson’s bill, are significant, however, the Center

might be a stumbling block. We would hope it would not be.

I wanted to suggest to you knowing that—and Mr. Jackson and

I have had long discussions about this—you may want to gather together your ammunition to address the things Mr. Jackson and I

spoke about. Some of us feel very strongly about creating the Center and there are others who raise technicalities, the fact that the

director apparently—maybe we will find out more in a little

while—is not supportive or at least is not expressing any support.

Thank you.

Not knowing whether Mr. Coburn has placed into the record the

opening statements of all members of the subcommittee, I will now

say that without objection, all opening statements are made a part

of the record.

First, I do want to apologize. I had a Veterans Committee markup on an education bill for veterans and that was scheduled for 10

a.m., so we scheduled this hearing for 11:30 a.m., figuring I would

be able to get out of that. Then they called the votes shortly after

10 a.m. and we had six votes which meant that markup was delayed, consequently everything was set back for me. I appreciate

Mr. Coburn taking the time to come over and get things started so

we did not get started too late.

Panel two will consist of the Honorable David Satcher, U.S. Surgeon General, accompanied by Mr. Kermit Smith, Chief Medical

Officer, Indian Health Service and Mr. John Ruffin, Associate Director, Research on Minority Health, National Institute of Health.

Thank you gentlemen. Welcome to our hearing.

Mr. Satcher, you are testifying on behalf of the Administration.

The clock ordinarily is 5 minutes. You have 10 minutes and hopefully you can get your point across within that period of time but

we will extend it if we have to.

Please proceed, sir.

STATEMENT OF HON. DAVID SATCHER, U.S. SURGEON

GENERAL, DEPARTMENT OF HEALTH AND HUMAN SERVICES

Mr. SATCHER. Thank you very much. I want to express my appreciation for the invitation to testify at this very important hearing

on ways to improve the quality of health and health care for minorities and H.R. 3250, the Health Care Fairness Act of 1999.

As you pointed out, with me today are experts from the Indian

Health Service, Dr. Kermit Smith, and Dr. John Ruffin, the Associate Director of the Office of Research on Minority Health at NIH.

Let me say how much we appreciate the testimony of Panel I and

the presence of Secretary Sullivan and his outstanding contributions in this area before, during and since he served as Secretary

of the Department of Health and Human Services.

I also want to acknowledge Jordan Cohen from the Association

of Medical Colleges who in the face of incredible odds has worked

so hard to improve the representation of minorities in the health

profession.

27

Your topic could not be more appropriate as we examine the

state of minority health in America. We are really addressing the

status of our Nation’s health overall and the strength of our public

health system.

Despite notable progress in overall health of the Nation, there

are continuing disparities in the burden of illness and death experienced by African-Americans, Hispanics, American Indian and Alaska Natives and Pacific Islanders compared to the U.S. population

as a whole. These disparities are not explained by biologic or genetic characteristics of racial and ethnic groups. Instead, they are

believed to be the results of a complex interaction among genetic

variation, environmental factors, economics, specific health behaviors and discrimination in access and quality of health care.

The Department of Health and Human Services adopted the

commitment to eliminate disparities in health on the basis of race

and ethnicity by the year 2010. I think we did this first in response

to President Clinton’s request that a health component be added to

the Race Initiative which he announced in 1997.

Second, the goal of eliminating disparities in health is one of the

two goals of Healthy People 2010. We will focus initially on six key

areas that reflect areas of disparity across multiple racial and ethnic minority groups. They are infant mortality, breast and cervical

cancer screening and management, cardiovascular disease risk factor reduction, diabetes complications, adult and childhood immunizations and HIV infections and AIDS.

We want to make it clear, however, that we are not limiting our

efforts to these six areas with which we will begin. There are many

other areas of disparity. Sunday, we will celebrate Mother’s Day.

Earlier this morning, I was with Congresswomen Nita Lowey and

Cynthia McKinney to talk about safe motherhood. African-American women are four times more likely to die during and around

pregnancy than the majority of women in this country.

We could talk about asthma. There are several areas of disparity

and the idea here is to begin with these six where we have the

kind of data base that we can measure our progress and we believe

we can have a great impact. All of these areas are of concern to

us.

I want to speak briefly about what we are doing since you have

heard the statistics relative to these disparities. We have begun a

program to address disparities starting with President Clinton’s

announcement in February 1998 shortly after I became Surgeon

General. One component of the Department’s initiative is the Racial and Ethnic Approaches to Community Health, REACH-2010. It

is designed to help communities mobilize and organize their resources in support of effective and sustainable programs that will

eliminate health disparities.

So far, 32 communities have been funded to develop plans for

eliminating disparities in 1 of these 6 areas, some of them more

than one. The communities with acceptable plans will receive programmatic funding during Phase II and new communities will be

funded later this year.

The Office of Civil Rights has played a very critical role in the

Department’s initiative to eliminate disparities in health. They

have focused on enforcement, education and outreach and I think

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are doing a great job. I want to give you a few examples of the

work of the Office of Civil Rights. These cases illustrate the discrimination that regrettably still is alive and well in the health

care setting.

The Office of Civil Rights recently reached a settlement with the

National Home Health Agency that had engaged in medical redlining, that is, it refused to serve a predominantly minority area

of New Haven, Connecticut. The Office of Civil Rights reached an

agreement with a national pharmacy chain that had repeatedly

failed to fill prescriptions of an African-American Medicaid recipient in Texas. The Office of Civil Rights reached a settlement with

a hospital in South Carolina that had a policy in effect of not giving

epidurals to women who did not speak English.

There were several of these kinds of experiences but I think we

are finding that through a process of enforcement, education and

communication, that we can, in fact, make significant progress.

The NIH has established a Working Group on Health Disparities

that is currently developing a strategic plan to expand training programs for minority researchers to set priorities and to synchronize

multidisciplinary research. That strategic plan will be reviewed by

the Office of Research on Minority Health and its Public Advisory

Committee.

I do want to point out that after much discussion, the former Director of NIH, Dr. Varmus, has written a letter in support of the

development of the Center and certainly the present Acting Director of NIH, Dr. Ruth Kirschstein supports the development of the

Center. I wanted to make that point because I think it is important

as you pointed out in terms of their positions.

Addressing the challenge of health improvement is a shared responsibility that requires the active participation and leadership of

the Federal Government, State and local government, other policymakers, health care providers, professionals, business leaders, et

cetera. The Agency for Health Care Research and Quality plans to

establish four centers of excellence this summer that will identify

practical tools and strategies to eliminate racial and ethnic disparities in the health care system. HRSA is leading a campaign for 100

percent access and zero percent disparities by the year 2010.

An area of development that I think is really important is the development of partnerships between our department and many private sector groups. We are partnered with Grantmakers in Health

which represents over 200 health-related foundations in this country. They are working with foundations and corporate giving programs to improve the Nation’s health. They have made elimination

of disparities a priority.

The California Endowment has initiated a program in multicultural health aimed at eliminating health disparities and through

collaboration with the CDC Foundation, has already funded three

additional Reach 2010 projects in California.

Likewise, the Robert Wood Johnson Foundation, the Commonwealth Foundation, the Kaiser Family Foundation and others have

funded programs for the elimination of disparities in health.

On April 24, 2000, our department and the American Public

Health Association announced a partnership to eliminate racial

and ethnic disparities. The partnership includes a three phase plan

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to develop a charge or blueprint of guidelines for our collaboration,

develop a detailed comprehensive national plan, and third, to implement that plan by 2002.

It is important to note the American Public Health Association

represents 55,000 members, many of them leaders in public health

throughout this country. When asked to rank issues for the year

2010, they listed elimination of disparities as their No. 1 priority.

We are happy to be partnering with the American Public Health

Association.

The role of the Health Care Fairness Act of 1999 in improving

minority health is significant, and I will close with these comments.

We thank you for your support of our initiative to eliminate racial and ethnic disparities in health and its parallel emphasis with

Healthy People 2010. The proposed Health Care Fairness Act of

1999 addresses several key elements the department has identified

as essential to a comprehensive approach toward eliminating disparities. They include the development of a balanced and comprehensive research agenda that addresses the unequal burden of

morbidity and mortality in racial and ethnic minorities.

Supporting efforts to improve the quality and outcome of health

care services as well as addressing the social determinants of

health including but not limited to access to care, the ten leading

health indicators of Healthy People 2010, five of which deal with

lifestyle and five with health care system issues; strengthening the

data collection infrastructure of HHS; recognition of the important

role of the Office of Civil Rights; and support for graduate health

education curriculum development and continuing medical education efforts to reduce disparity in health and health outcomes as

well as increasing the knowledge base with respect to cultural competency.

Mr. Chairman and members of the committee, as Surgeon General of the United States and as one who has a major responsibility

in this area, I am encouraged by the evidence of the bipartisan,

public-private, and Federal, state and local commitment that is developing in this country.

As we continue our work to improve the lives of our fellow Americans, let me leave you with the premise upon which the U.S. Public Health Service was founded in 1798 as the Marine Hospital

Service. That premise is, ‘‘to the extent that we respond to the

needs of the most vulnerable among us, we do most to promote and

protect the health of the Nation.’’ Thank you for the opportunity to

share with you some of our department’s activities and our perspectives. We appreciate your support and we look forward to our continuing partnership to improve health and the health care system

in this country.

We would be happy to respond to any questions.

[The prepared statement of Hon. David Satcher follows:]

PREPARED STATEMENT OF DAVID SATCHER, ASSISTANT SECRETARY FOR HEALTH AND

SURGEON GENERAL, U.S. PUBLIC HEALTH SERVICE, DEPARTMENT OF HEALTH AND

HUMAN SERVICES

Good morning. I am David Satcher, Assistant Secretary for Health, Department

of Health and Human Services (HHS), and Surgeon General of the United States.

I thank you, Mr. Chairman and members of the Committee, for your invitation to

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testify at this important hearing on how to improve the quality of health care for

minorities and H.R. 3250, The Health Care Fairness Act of 1999. With me today

are technical experts from the HHS agencies involved in ensuring the quality of

health care for all Americans. They are: Kermit C. Smith, D.O., the Chief Medical

Officer of the Indian Health Service; and John Ruffin, Ph.D., Associate Director Office of Research on Minority Health at the National Institutes of Health.

Let me say that the topic of your hearing could not be more appropriate, for indeed, as we look at the state of minority health in America we are really looking

into the future of our nation’s health.

BACKGROUND ON MINORITY HEALTH

In the 1985 Report of the Secretary’s Task Force on Black and Minority Health,

Secretary Margaret M. Heckler wrote these words, ‘‘In January 1984—ten months

after becoming Secretary of Health and Human Services—I sent Health, United

States, 1983 to the Congress. It was the annual report of the health status of the

American people. That report—like it predecessors—documented significant

progress: Americans were living longer, infant mortality had continued to decline—

the overall American health picture showed almost uniform improvement. But, and

that ‘‘but’’ signaled a sad and significant fact, there was a continuing disparity in

the burden of death and illness experienced by Blacks and other minority Americans

as compared with our nation’s population as a whole. That disparity has existed

ever since accurate federal record keeping began—more than a generation ago. And

although our health charts do itemize steady gains in the health of minority Americans, the stubborn disparity remained—an affront both to our ideals and to the ongoing genius of American medicine. The report is comprehensive. Its analysis is

thoughtful. Its thrust is masterful. It sets the framework for meeting the challenge—for improving the health of minorities. It can—it should—mark the beginning of the end of the health disparity that has, for so long, cast a shadow on the

otherwise splendid American track record of ever improving health.’’

It is now the year 2000.

Compelling evidence that race and ethnicity correlate with persistent, and often

increasing, health disparities among U.S. populations demands national attention.

Indeed, despite notable progress in the overall health of the Nation, there are continuing disparities in the burden of illness and death experienced by African Americans, Hispanics, American Indians, Alaska Natives, and Asian Pacific Islanders,

compared to the U.S. population as a whole. Current information about the biologic

and genetic characteristics of racial and ethnic groups does not explain the health

disparities experienced by these groups compared with the white, non-Hispanic population in the United States. These disparities are believed to be the result of the

complex interaction between genetic variations, environmental factors, economics,

specific health behaviors, and discrimination.

Even though the Nation’s infant mortality rate is down, the infant mortality rate

among African Americans is still more than double that of white citizens. Heart disease death rates are more than 40 percent higher for African Americans than for

whites. The death rate for all cancers is 30 percent higher for African Americans

than for whites; for prostate cancer, it is more than double that for whites. African

American women have a higher death rate from breast cancer despite having a

mammography screening rate that is higher than for white women. The death rate

from HIV/AIDS for African Americans is more than seven times that for whites; the

rate of homicide is six times that for whites.

Hispanics living in the United States are almost twice as likely to die from diabetes as are non-Hispanic whites. Although constituting only 11 percent of the total

population in 1996, Hispanics accounted for 20 percent of the new cases of tuberculosis, and have higher rates of hypertension and obesity than non-Hispanic

whites. There are differences among Hispanic populations as well. For example,

whereas the rate of low-birth-rate weight infants is lower for the total Hispanic population compared to whites, Puerto Ricans have a low-birth-weight rate that is 50

percent higher than that for whites.

American Indians and Alaska Natives have an infant mortality rate almost double

that of whites. The rate of diabetes for this population group is more than twice

that for whites. The Pima of Arizona have one of the highest rates of diabetes in

the world. American Indians living in North and South Dakota have an average life

expectancy that is 11 years less than that for the rest of the U.S. population. Overall, the life expectancy for American Indians and Alaska Native is 71 years of age—

nearly five years less than the U.S. Races populations.

Asian and Pacific Islanders, on average, have indicators of being one of the

healthiest population groups in the United States. However, there is great diversity

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within this population group, and health disparities for some specific groups are

quite marked. Vietnamese women suffer from cervical cancer at nearly five times

the rate of white women. New cases of hepatitis and tuberculosis are also higher

in Asians and Pacific Islanders living in the United States than in whites.

The Indian Health Service (IHS) and Native American Tribes have made much

progress improving the American Indian and Alaska Native health status over the

years. Infant mortality rates, maternal death rates, morbidity and mortality from

infectious diseases have all decreased dramatically over the past 40 years. However,

during the last five years, this progress has stalled and indeed regressing in some

areas. American Indian infant mortality is beginning to increase in some communities. During 1992-1994, the infant mortality rate for the IHS Phoenix Regional

Area was 9.4 deaths per 1,000 live births. The rate increased to 9.7 from 1994-1996.

In the IHS Nashville Regional Area, the rate increased from 11.6 per 1,000 live

births to 11.7 over the same time frame.

Behavior-related mortality rates for the American Indian population residing in

the IHS regional service areas are rising. For example, age-adjusted mortality rates

for AI/ANs due to alcoholism, suicide, and homicide during 1992-1994 were 45.5,

19.2, and 15.1 deaths per 100,000 persons, respectively. The 1994-96 data indicate

these numbers increased to 48.7 deaths per 100,000 for alcoholism, 19.3 for suicide,

and 15.3 for homicide. During this time period, the age-adjusted mortality rate for

AI/AN for HIV infections rose 59 percent, and for diabetes mortality, an increase

of 13 percent. Increases in age-adjusted mortality rates are also noted for this population in malignant neoplasms and cerebrovascular disease.

Slight improvement has been made between 1992-1994 and 1994-1996 in age-adjusted mortality rates for AI/ANs due to Tuberculosis (a rate of 2.3 improved to a

rate of l.9) and heart disease (a rate of 157.6 improved to a rate of 156.0). However,

increases in age-adjusted mortality rates were experienced for AI/ANs deaths due

to malignant neoplasms (a rate of 112.2 during 1992-1994 increased to a rate of

116.6 during 1994-1996) and for AI/ANs deaths due to cerebrovascular diseases (a

rate of 27.8 during 1992-1994 increased to a rate of 30.5 during 1994-1996). The bottom line figure of life expectancy at birth for American Indian and Alaska Native

population in the IHS regional service delivery areas remained exactly the same between the 3-year period 1992-1994 and 1994-1996, 71 years.

HHS INITIATIVE TO ELIMINATE DISPARITIES IN HEALTH

The demographic changes that are anticipated over the next decade magnify the

importance of addressing disparities in health status. Groups currently experiencing

poorer health status are expected to grow as a proportion of the total U.S. population; therefore, the future health of America as a whole will be influenced substantially by our success in improving the health status of our racial and ethnic minorities.

In June 1997, President Clinton introduced to the country the concept of One

America in the Twenty-first Century: The President’s Initiative on Race. He appointed a national advisory board led by John Hope Franklin, and in their September 1998 report to the President, ‘‘One America in the 21st Century: Forging a

New Future,’’ they included their observations on what they saw and heard about

race and its impact upon communities throughout the country. The Board report

also offers recommendations on specific steps that should be taken to eliminate racial disparities experienced by people of color.

Additionally, the President asked each cabinet head to develop some strategy supporting the Race Initiative. In the Department of Health and Human Services, we

adopted the commitment to eliminate disparities in health on the basis of race and

ethnicity by the year 2010. The President announced this unprecedented initiative

from the White House in February 1998. We focus on six key areas: infant mortality, breast and cervical cancer screening and management, cardiovascular disease

risk factor reduction, diabetes complications, adult and childhood immunizations,

and HIV infections and AIDS. These six health areas were selected for emphasis

for they reflect areas of disparity that are known to affect multiple racial and ethnic

minority groups at all life stages and are areas over which we could have direct impact.

This Initiative marks the first time in the history of our government that we have

made the commitment to eliminate, not just reduce, the health disparities between

majority and minority populations. Additionally, the Initiative will parallel the second goal of Healthy People 2010, the Nation’s disease prevention, health promotion

agenda for the first decade of the 21st century. The other goal is to increase the

quality and years of healthy life.

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The Initiative is led by the Office of Public Health and Science (OPHS) and the

responsibility for overall guidance within HHS is the Public Health Council (PHC).

Beginning shortly after the President’s announcement, working groups comprised

of experts from the agencies within HHS met to discuss the status of HHS programs

and policies in the six health focus areas and the data issues relevant to the Initiative. These working groups have generated full length reports that review the epidemiology of the six focus areas and examine a range of strategies for effective interventions for prevention and treatment. The reports offer recommendations for future

research, policies, and program investments that would lead to the elimination of

health disparities.

One of the most visible components of the HHS Initiative is the Racial and Ethnic

Approaches to Community Health 2010 program (REACH 2010). REACH 2010 is intended to help communities mobilize and organize their resources in support of effective and sustainable programs that will eliminate health disparities. In FY 1999,

Congress appropriated $10 million dollars to the Centers for Disease Control and

Prevention (CDC) to administer the program. The first year of REACH demonstrations was designed as a planning year to solidify the multi-agency, community oriented collaboration required of the applicants. Subsequent years will involve implementation of the interventions to address one or more of the six clinical focus areas

within a well-defined population.

CDC used this appropriation to fund 32 community coalitions and three additional

community coalitions were funded by the California Endowment to participate in

REACH 2010. The populations targeted include African-American, American Indian,

Alaska Native, Hispanic American, Asian American, and Pacific Islander. Of the

awards, five were for infant mortality, five for breast and cervical cancer screening

and management, four for immunizations, twelve for diabetes complications prevention, twelve for cardiovascular disease risk factor reduction, and two for HIV infection and AIDS. These awards were spread over 18 states and 22 cities.

The FY 2000 appropriation of $30 million will be used to implementation of the

community derived strategies and to enlist new community coalitions in the effort

to eliminate disparities.

The Office of Civil Rights (OCR) has played a critical role in the department’s Initiative to Eliminate Racial and Ethnic Disparities. Through enforcement, education

and outreach, OCR has raised public awareness of the role of discrimination as one

explanatory factor in racial and ethnic disparities. Recent OCR cases illustrate the

discrimination regrettably is alive and well in the health care setting.

1. OCR reached a settlement with a national home health agency that had engaged

in medical redlining, that is, it refused to serve a predominantly minority area

of New Haven, Connecticut;

2. OCR reached an agreement with a national pharmacy chain that had repeatedly

failed to fill the prescription of an African-American Medicaid recipient in

Texas;

3. OCR reached a settlement with a hospital in South Carolina that had a policy

in effect of not giving epidurals to women who did not speak English; and

4. OCR reached a settlement with a hospital in Philadelphia whose lack of an effective policy for treating patients who do not speak English created serious problems for a pregnant woman who needed emergency care.

OCR’s enforcement, coupled with recent research documenting the potential role

of racial bias in explaining physician decision-making, illustrate that eliminating racial and ethnic disparities is both a civil rights and a public health challenge. If we

ignore the former and focus solely on the latter, we will not be fully successful.

Addressing the challenge of health improvement is a shared responsibility that requires the active participation and leadership of the Federal Government, States,

local governments, policymakers, health care providers, professionals, business executives, educators, community leaders, and the American public itself.

A national partnership is needed to develop a balanced community health system

that promotes healthy lifestyles and behaviors, and in challenges a health care delivery system that allows for unequal outcomes on the basis of race and ethnicity.

The task of HHS is to provide leadership through conducting innovative and balanced research, expanding and improving programs to purchase or deliver quality

health services, developing programs to reduce poverty and provide children with

safe and healthy environment, and by expanding prevention efforts. Currently, our

activities include, but are not limited to:

• In October 1997, the Secretary issued the first Federal agency policy requiring the

inclusion of racial and ethnic data in all of its data systems, with very few exceptions. The inclusion policy also required compliance with the Federal standards for racial and ethnic data.

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• In February 2000, the HHS Data Council’s Working Group on Racial and Ethnic

Data and the Data Working Group of the HHS Initiative to Eliminate Racial

and Ethnic Disparities in Health presented their joint report on ‘‘Improving the

Collection and Use of Racial and Ethnic Data in HHS’’ to the Data Council. This

report builds upon the numerous recommendations developed in the past and

presents a long term agenda for improving the collection and use of racial and

ethnic data across the Department and its agencies. This report sets the stage

for the National Academy of Sciences report which is called for in the Health

Care Fairness Act under discussion today. • The Health Care Financing Administration (HCFA) now requires each state Peer

Review Organization (PRO) to include a focus on eliminating racial and ethnic

disparities in health. PROs had previously been required to focus on improving

quality of care in several other key clinical areas closely related to the Initiative. • The Agency for Healthcare Research and Quality (AHRQ) plans over the next five

years to establish up to four ‘‘centers of excellence’’ that will identify practical

tools and strategies to eliminate racial and ethnic disparities in the health care

system. The research conducted by these centers will go beyond documenting

disparities by putting a new emphasis on understanding their underlying

causes and developing strategies to eliminate them. • In February 2000, an important working conference, ‘‘Diversity and Communication in Health Care: Addressing Race, Ethnicity, Language, and Social Class in

Health Care Disparities’’ was sponsored by the Office of Minority Health, the

Health Resources Services Administration (HRSA), AHRQ, the Commonwealth

Fund, and the Sergei Zlingoff Fund for Medical Education and Research. The

purpose of the conference was to determine the state-of-the-art for improving

provider-patient communication, to define its adequacy to increase effectiveness

of health care for racial and ethnic minorities, and to develop a work plan to

provide needed modifications. A larger conference is called for in the Health

Care Fairness Act. • In addition to the work discussed earlier, the Office of Civil Rights is focusing on

a program of dialogue and education of health care providers and patients to

increase awareness of civil rights responsibilities. For instance, in New York

City, OCR has convened a series of meeting with all stakeholders-providers, advocates, faith communities, foundations, medical societies, hospital associations,

and others in an effort to develop a greater understanding of the root causes

of racial and ethnic disparities, as well as a blueprint for eliminating disparities. This dialogue has been extremely productive, and talk has led to constructive action. At the same time OCR has begun to look at data pertaining to hospitals to determine why some high tech medical procedures do not appear to

be performed on minorities at the same rate as non-minorities.

• HRSA has launched a campaign for 100 percent access, 0 percent disparities by

the year 2010. As part of its mission to provide quality comprehensive health

care to under served and vulnerable populations, HRSA hopes to build and sustain healthier communities by empowering communities to identify and develop

solutions tailored to their needs. Currently, 23 states and over 100 communities

are engaged in the campaign. Additionally, HRSA has funded 10 communities

across the country to address significant disparities in perinatal health indicators. These communities demonstrated significant infant mortality and morbidity rates, had an existing consortia of stakeholders with infant mortality reduction experience, and developed a feasible plan to reduce barriers, improve

systems of care, and eliminate disparities.

• As required in the re-authorization of the Office of Minority Health, HHS is establishing its first Advisory Committee on Minority Health. We understand that

this advisory committee could serve the role of that called for in the Health

Care Fairness Act to provide advice to the Secretary on matters related to the

development, implementation, and evaluation of graduate and continuing education curricula for health care professionals to decrease the disparities in

health care and health outcomes.

• The National Institutes of Health (NIH) remains committed to conducting research on the diagnosis, treatment, and prevention of diseases resulting in

health disparities, including AIDS, cancer, diabetes and heart disease. We recognize that these efforts would be enhanced by a central organization that coordinates and reviews the health disparity research being conducted by the

NIH’s various Institutes and Centers. Therefore, NIH has established a Working Group on Health Disparities that is currently developing a Strategic Plan

to expand training programs for minority researchers, set priorities and synchronize multi-disciplinary research. The Strategic Plan will be reviewed by the

34

Office for Research on Minority Health and its public Advisory Committee. The

unprecedented level of coordination and input from the public, including those

most affected by health disparities, and the prominent role played the Office for

Research on Minority Health, should result in measurable improvements.

• The Indian Health Service, Department of Health and Human Services, and the

Administration are working with Indian Tribes to address the disparity in

health status among American Indian and Alaska Native people. During the

past 3 years the Indian Tribes have identified alcoholism/substance abuse, diabetes, cancer, heart disease, infectious disease, maternal and child health, mental health, injuries and domestic/community violence as the top health problems

that must be addressed by the IHS budget requests. Local IHS/Tribal/

Urban(ITU) health priorities dovetail with the President’s Race Initiative on

Health Disparity focus and underpin the Indian health budget priorities set by

the Indian Tribes and the Administration in the past 2 years.

• The IHS, tribes and urban health programs have demonstrated the ability to improve the health status of American Indian and Alaska Native people. Improving essential access to health care in order to address health disparities has

been a top priority for the I/T/U’s annual budget and Government Performance

and Results Act performance plan initiatives. The first annual performance report, which was submitted for FY 1999, provides a base performance level for

the health interventions/measures that will ultimately lead to improved outcomes in health status. Indian Tribes are becoming increasingly involved in developing the performance targets. Joint Federal-Tribal efforts are directed toward achieving these targets as a means of demonstrating the effectiveness of

the I/T/U programs to make a difference in the disparities that exists between

the health of American Indian/Alaska Native people and the rest of the Unites

States.

PUBLIC/PRIVATE PARTNERSHIPS TO IMPROVE MINORITY HEALTH

As the Nation enters a new millennium, an unprecedented opportunity exists to

influence and effect health in a way that is fundamentally fair, and more inclusive

of all Americans. HHS has ‘‘stepped to the plate’’ to eliminate disparities in health

and has created an environment where private foundations and endowments are engaging their colleagues to eliminate disparities in health. For example:

• HHS and Grantmakers in Health (GIH), an educational organization that works

with foundations and corporate giving programs to improve the nation’s health,

cosponsored a national leadership conference in September 1998, to discuss

strategies for developing and strengthening partnership focusing on eliminating

racial and ethnic disparities in health by 2010. Attending the conference were

approximately 250 key public policy makers, industry and community leaders,

including individuals representing foundations, community-based organizations,

national organizations with expertise in key health areas and with a history of

serving racial and ethnic groups, providers, insurance companies and managed

care plans, the media, business, faith-based organizations, and consumers.

• The California Endowment has initiated a Program in Multi-cultural health

aimed at eliminating health disparities and through collaboration with the CDC

Foundation, funded three additional REACH 2010 projects in California.

• The Robert Wood Johnson Foundation’s Investigators Award in Health Policy Research Programs is seeking to improve understanding of the social determinants

of health.

• The Commonwealth Fund cosponsored a meeting with managed care organizations on data collection, quality of care measurement, and access to health care.

As a result, efforts are being made to educate health plans that the Federal government does not prohibit the collection of racial and ethnic data.

• The Henry J. Kaiser Family Foundation hosted a conference on ‘‘Race, Ethnicity,

and Medial Care: Improving Access in a Diverse Society.’’ This conference

sought to understand the reasons for disparities in access to health and health

status, and develop more effective efforts to address them. The Foundation is

developing a set of ‘‘leading health indicators’’ by which to measure the progress

made toward the elimination of disparities.

• The National Policy Association, the Association of Health Services Research, and

several HHS agencies cosponsored a conference in April 2000 on ‘‘Income Inequality, Socioeconomic Status and Health: Exploring the Interrelationships.’’

The purpose was to bring together business and labor leaders and experts in

health and social policy to address critical questions about health and health

disparities.

35

• OCR has worked closely with the United Hospital Fund, the Greater New York

Hospital Associate, and the New York Task Force on Immigrant Health to develop a pilot program that used state of the art technology and trained interpreters to enable health care providers to communicate more effectively with

persons who are limited English proficient.

• During the 1999-2000 legislative sessions for the States, eighteen states had

pending legislation or executive orders that related to the elimination of health

disparities or improving the quality of care to minorities. We are working to

identify the status of these bills now that most sessions have ended.

• On April 24, 2000, HHS and the American Public Health Association announced

a partnership to eliminate racial and ethnic health disparities. The partnership

includes a three phase plan to develop a charge or ‘‘blueprint’’ of guidelines for

our collaboration, develop a detailed, comprehensive national plan, and thirdly,

the implementation of the plan by 2002.

ROLE OF THE HEALTH CARE FAIRNESS ACT OF 1999 IN IMPROVING MINORITY HEALTH

We thank you for your support of the HHS Initiative to Eliminate Racial and Ethnic Disparities in Health, and its parallel emphasis within Healthy People 2010.

The proposed Health Care Fairness Act of 1999 (H.R. 3250) addresses several of the

key elements the Department has identified as essential to a comprehensive approach towards eliminating disparities:

• development of a balanced and comprehensive research agenda that addresses the

unequal burden of morbidity and mortality in racial and ethnic minorities;

• supporting efforts to improve the quality and outcomes of health care services and

addressing the social determinants of health, including but not limited to, access to health care;

• strengthening the data collection infrastructure of HHS;

• recognition of the important role of the Office for Civil Rights;

• support for graduate health care education curriculum development, continuing

medical education efforts to reduce disparity in health and health outcomes, and

increasing the knowledge base with respect to cultural competency.

We particularly appreciate acknowledgment of the importance of research into the

behavioral and social factors underlying health disparities, and support programs

which increase educational attainment and employment opportunities.

The section of the Health Care Fairness Act on the Office for Civil Rights is supportive of efforts underway to include the Office in development of health policy

throughout HHS that address civil rights observance, program evaluation, and quality assessment.

Mr. Chairman, and members of this committee, as a physician and scientist, administrator and educator, and one charged with the task of leading the effort to

challenge a health care system that allows for an unequal burden of morbidity and

mortality among our racial and ethnic groups, I am reminded of how the National

Institutes of Health explain how research and science work. It is said that ‘‘science’’

comes from the Latin scientia meaning ‘‘known things,’’ scientists and the practice

of science exist because of what we do not know. The aim of science is to move what

we do not know into the realm of known things and then, with a greater store of

knowledge, begin again, as if advancing to a new frontier.

The elimination of disparities is an achievable goal that requires we bring all our

forces to bear—a balanced community health system, a comprehensive research

agenda that addresses the unequal burden of morbidity and mortality in racial and

ethnic minorities, training a multi-cultural workforce that is sensitive to the culture

of its colleagues, data collection that reflects the inhabitants of this country, and one

set of quality health care delivery goals for all. As we continue our work to improve

the lives of our fellow Americans, let me leave you with the premise upon which

the U.S. Public Health Service was founded in 1798, is... ‘‘to the extent we care for

those most vulnerable among us, we do most to protect the health of the nation.’’

Thank you for the opportunity to share some of the Department’s activities. We

appreciate your support and look forward to continuing our partnership to improve

our health care system.

Mr. BILIRAKIS. Thank you very much, Mr. Satcher.

The Chair will recognize himself for 5 minutes.

You mentioned Mr. Varmus’ letter which was written after he

had stepped down as Director of NIH. Believe me, it would have

made our lives a lot easier if he had written it prior to that point.

36

You mentioned the Administration is supportive of elevating the

office to Center or is it the current NIH Director or is it both?

Mr. SATCHER. The Administration, as you know within the budget submitted by the President, does not have a position on the Center proposal and so I am not speaking for the Administration in

terms of the specific proposal, but as you know, the Administration

is strongly supportive of strategies to eliminate disparities in

health and believes that research targeted to that is critical.

Mr. BILIRAKIS. I would like to think that we are all supportive

of research of that nature. What we are talking about doing is

something which is apparently a little controversial, though I hate

to use the word controversial. You would like to think that the people directly affected by elevating the office to center status—obviously the public is directly affected and minorities are directly affected—but I am talking about the Director of NIH and his staff,

you would like to know what their position is on it. I do not think

your comments go directly to that.

Mr. Ruffin, do you have any comment?

Mr. RUFFIN. In all of my conversations with the current Director

of the National Institutes of Health, she is not opposed to the elevation of the office. Mr. Mark Smolonsky, who is our legislative individual there, is also accompanying me today at this meeting and

if I am wrong about that in any way, then Mark can correct me,

but in all of my conversations with the current Director of NIH,

there has been no opposition to the elevation of the office.

Mr. BILIRAKIS. Maybe I am splitting hairs here but Mr. Jackson

has also basically responded in the same way in the sense that the

current Director is not in opposition but that could be sort of an

ambivalence if you will. I think knowing the Directors position is

significant because as I understand it if the office becomes a center,

the Director may not have any control over the funding of the center—this may be acceptable but you would like to hear these things

from the Director.

Mr. RUFFIN. I certainly would not be able to speak directly for

the Director of NIH but again, only to translate my conversations

with her on those issues.

Mr. BILIRAKIS. Does the Administration have a position on the

entire bill, H.R. 3250, and if it does not have a position, will it be

providing a formal position on this legislation? Can you all tell me

that?

Mr. SATCHER. I cannot tell you if the Administration will submit

a formal position because as I said before I think when the President submitted his budget, OMB was not in a position to speak to

this particular legislation at the time.

I do want to make it clear—I obviously represent the Administration—it is my professional opinion and speaking as Surgeon General and in that responsibility for dealing with the best science,

this legislation is consistent with what we are trying to do to eliminate disparities in health in this country. It is needed in order to

do it.

Mr. BILIRAKIS. I agree with you, I think it is needed but I think

the President of the United States should tell us the same thing,

or at least the Director of NIH. I cannot quite understand, how can

any of us really understand and I do not mean to slight your reVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00040 Fmt 6633 Sfmt 6602 E:\HEARINGS\64770 pfrm08 PsN: 64770
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marks and your response but it doesn’t tell us what we need to

hear I think.

Mr. SATCHER. So you want a statement from the Administration

that it supports this specific legislation?

Mr. BILIRAKIS. Supports this legislation and if there are any

areas they do not support, they should let us know and more specifically, not to belittle the other areas, but regarding the Center.

The Chair now yields to Mr. Brown.

Mr. BROWN. Mr. Satcher it is a pleasure to have you in front of

us.

Your successor at CDC gives a speech about public health talking

about 100 years ago the life expectancy in this country was 46 and

now it is some 30 years longer. Some of the success he points out

is in high tech medicine. Most of the success, 70 or 80 percent of

that, the 30-year lengthening of life span, is due to strides in public

health, everything from vaccines to safe drinking water to better

sewage disposal, controlling of lead poisoning, seatbelts, all kinds

of things like that.

Your work first at CDC and now in the Public Health Service

has been exemplary. I would like you to discuss for us the disparities in public health delivery of services, whether it is inner city

hospitals or vaccines or wherever you might want to go with the

question. Do we know enough about these disparities in the public

health part of our health care system?

Mr. SATCHER. I think we are learning more every day. These are

the ten leading health indicators for Healthy People 2010. As I

said, five of them are in lifestyle—tobacco use, physical activity,

overweight and obesity, substance abuse, responsible sexual behavior. Five are in the health system: mental health, injury and violence, environmental quality, immunization, access to health care.

In virtually all of these areas, we can identify disparities. If you

want to start with access to health care, as you know and have

heard, Hispanics are most likely to be uninsured of any group in

this country. One out of three Hispanics is uninsured. AfricanAmericans are next most likely to be uninsured. Even among those

who are insured, the probability of having a personal physician is

lowest among Hispanics and African-Americans. Hispanics and African-Americans together make up 25 percent of the population and

yet 70 percent of the people who live in underserved communities

in this country.

In the area of immunization, adult immunization, influenza and

pneumococcal vaccine where we are not doing as well as we should

be doing with the elderly. Sixty-seven percent of whites in the last

year, for which we have data, 1997, received the influenza vaccine,

67 percent of whites over 65, 50 percent of African-Americans, 58

percent of Hispanics.

In the pneumococcal vaccine, it is even worse, 47 percent whites

over 65, 34 percent of Hispanics, 30 percent of African-Americans.

Even in the area of environmental quality, today in this country,

African-American and Hispanic children are much more likely to

live within two miles of hazardous waste sites than other groups

in this country. In fact, 40 percent of the people who live within

two miles of hazardous waste sites in this country are AfricanVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00041 Fmt 6633 Sfmt 6602 E:\HEARINGS\64770 pfrm08 PsN: 64770
38

Americans and Hispanics. If you add American Indians, it is above

50 percent.

In all of these areas, we can point to disparities and we take the

position that if we can attack these areas of disparities with the

health system and we are not just talking about the health system,

we are also talking about lifestyles. We have to be very clear that

lifestyles like tobacco use and physical activity, substance abuse

are areas of opportunity. They are not just individual responsibility. In many cases, they are community responsibilities.

If people attend schools where they do not offer courses in physical education, they are less likely to be physically active. If they

live in communities where it is not safe or does not appear to be

safe to get out and walk or jog on the street or bike, where you

do not have biking trails, they are less likely to be physically active. In all of these areas, I think we can identify opportunities for

intervention. Many of them are public health.

The only other thing I will say because I have had some minor

disagreement with some of my colleagues but not major, when we

say that 50 percent of disparities or variations in morbidity and

mortality are due to lifestyle, 20 percent to environment, 20 percent to genetics and 10 percent to access to care, we know that a

really concerned physician provider influences lifestyle significantly. If every physician would ask his or her patient if he or she

smoked and then ask them to quit without even implementing a

smoking cessation program, 2 million more people would stop

smoking in this country every year.

If physicians wrote prescriptions like the Surgeon General’s prescription, prescribing physical activity and good nutrition for their

patients, many more would have appropriate lifestyles. We believe

that a pediatrician who is concerned about whether his patient is

exposed to lead, does the appropriate screening, intervenes with

the appropriate agencies, makes a big difference in these areas. So

I put a little more weight on access to care than some of my colleagues because I believe that we, as physicians, have tremendous

opportunities to intervene.

Dr. Kermit Smith with the Indian Health Service can probably

speak more to that than I because they have done some outstanding things in the Indian Health Service.

Mr. BILIRAKIS. The time has expired. You may have an additional minute.

Mr. SMITH. Thank you for the opportunity.

The activities we have been engaged in, our numbers might be

a little bit different, access, might be a bit better but again, we

have a large population of Native Americans who live in the cities

and we don’t deal with them in the Indian Health Service. Those

that are on our reservations are in areas where we provide care

and we may see only 70 to 75 percent of those who live in those

areas.

We have made some real strides in the public health activities

we have been involved in, sanitation. We still have areas where we

have no electricity, no telephones, so in those areas we are still trying to catch up.

The activities related to smoking cessation, the behavioral activities, we have made some strides but when we look at our mortality

39

and morbidity, about 50 percent of the morbidity in our people is

still related to behavioral activities.

Mr. BROWN. One point of clarification, going back to Mr. Satcher.

You said at the beginning of your comments even among insured

Americans, there is a racial disparity between whites and minorities over the number of people who actually have a primary care

physician with whom they have some relationship?

Mr. SATCHER. Or even a personal physician. Ideally, that would

be a primary care physician but if you just use the word personal,

there are dramatic disparities.

Mr. BROWN. So minorities are less likely, even insured minorities

are less likely to hear from a doctor about those issues?

Mr. SATCHER. Exactly.

Mr. BILIRAKIS. The gentleman’s time has expired, Mr. Coburn?

Mr. COBURN. I just want to follow up on that. Is that because

they are not available or because they don’t seek them out? Where

is the motivation?

Mr. SATCHER. I think that is a good question. You are going to

hear some of that from the next panel. I know Kevin Schulman is

here who has done some very interesting research.

This gets back to the underserved communities. You can have

Medicaid or Medicare and if you live in a community where you

don’t have access to a physician, you are less likely to get the flu

shot or even if you have a physician but don’t have the kind of relationship where they really reach out to make sure you get your

shot.

Mr. COBURN. You are describing a doctor instead of a physician?

A physician always reaches out.

Mr. SATCHER. Especially if it is Tom Coburn.

Mr. COBURN. That is the difference and I think that is one of the

things we ought to have a discussion about because part of our

problem in access to care is not on the receipt end, it is on the professional side.

Mr. SATCHER. Exactly.

Mr. COBURN. We need to do a much better job in our profession

of knowing what it takes to reach out to get somebody to change

a lifestyle or to think about it, think about the communities. It is

not just about money in terms of being a doctor.

Mr. SATCHER. I think it is significant that when you have such

underrepresentation of African-Americans, Hispanics, American Indians of physicians, the cultural barriers, the reaching out, there

is a difference.

Mr. COBURN. I agree.

Mr. SATCHER. That is one of our major concerns.

Mr. COBURN. My latest partner is an African-American female

who graduated from Duke Medical School and she has taught me

tons with my own patients culturally that I had no knowledge of

in terms of interacting with them. So she has been a great benefit

to teach me the cultural things. I didn’t get it in medical school,

that is for sure, so that is the other side of it.

I was saying we are going to have to address the professional

side of this as well after you bring us the research to tell us what

we need to do with this bill.

40

One of my favorite issues to visit with you about is what we saw

on HIV and we are getting to reauthorize and we have seen this

disease move to the minority communities. That is where it is shifting. Do you have recommendations for us as we do that in terms

of making sure we address it because one of the things that the Inspector General and GAO reports said was ‘‘African-American, Hispanic and women are in higher proportions than the representation

in the AIDS population, yet they generally receive less appropriate

health care.’’ In other words, they are there but they are not getting health care appropriate for them.

Do you have any recommendations for us, not just on this bill

but as we look at what we should do on that?

Mr. SATCHER. I think it is not unrelated to what we were just

discussing in terms of we know that African-Americans are less

likely to be insured, we also know they are less likely to have that

kind of personal physician and the kind of relationship where they

are more likely to get the care they need. I think we are on the

right track in looking at this whole doctor-patient relationship and

making it a part of our discussion of access.

When I use the word access, I am not just talking about availability but I am talking about access to a relationship that is going

to result in your getting the kind of care that you need whether

it is for AIDS, which it is in this case.

We have some very, we think, good opportunities under Ryan

White. When I testified we made recommendations for expanding

some of those opportunities to communities that tend to get left

out. We are struggling here with trying to make sure people who

need a personal relationship with a physician, a caring relationship, that they are able to find it. We have to come up with some

innovative strategies that might go beyond physicians to health

care teams that are innovative and we may need to be a bit more

aggressive in terms of some of our programs like loan forgiveness

programs and things like that, loan repayment, to get more physicians into some of these communities.

Mr. COBURN. One of the things we are debating in the Ryan

White reauthorization is how we allocate the money. This is a delayed disease where we have historically measured AIDS cases

rather than HIV prevalence and I believe we have 33 or 34 States

that have HIV prevalence data. How should we, in terms of addressing as this moves to the minority community and the communities of color, especially women because that is where it is going,

how should we allocate the money? Should we use prevalence data

or should we use the same old average AIDS data that we have

used in the past? Do you have a recommendation in that regard?

Mr. SATCHER. I think we have to go beyond AIDS. As you know,

I agree with the position and recommendation of CDC that we

should have HIV name reporting. While I understand the fears of

people who oppose it saying we still live in a country where you

can be discriminated against in hiring, et cetera if people know you

have HIV. I just think somehow we as a Nation have to guarantee

the confidentiality but also the protection of people who are diagnosed as positive for HIV. I don’t think we have done that yet.

I agree with you that we need name reporting and we also need

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41

mitted diseases including partner, et cetera, but in order to get

there, we have to get rid of some of the fear and stigma surrounding this problem.

Mr. COBURN. We have to have a bill like this to make sure everybody has access.

Mr. SATCHER. Exactly.

Mr. BILIRAKIS. Thank you.

A vote is being called but I believe Mr. Barrett was here?

Mr. BARRETT. I will be brief.

Mr. Satcher, I want to thank you when you came to Milwaukee

in December for a women’s health conference and I still hear people say how wonderful you were, so I appreciate your willingness

to come to the great midwest to visit with us.

Mr. SATCHER. I enjoyed being with you.

Mr. BARRETT. You will have to excuse my slow, deliberate approach but it would be helpful if you could just three illnesses or

three conditions where you see a disparity between the majority

community and the minority community where you think we could

make a difference?

Mr. SATCHER. Let me start with infant mortality. Obviously I feel

very strongly that as a Nation if there is any area where we ought

to make a commitment to universal access it is to prenatal. We

ought to do everything we can to make sure that every woman has

access to prenatal care beginning in the first trimester of pregnancy. We talked about that this morning in terms of safe motherhood.

I believe we could make a difference if we set up systems in this

country to assure that universal access to prenatal care and to

really target communities because we are down to a few areas

where I think we have major problems. As we said this morning,

we have made dramatic progress in this country in the last 50

years in terms of reducing maternal mortality. Yet we have not

made any progress since 1982. Today, African-American women are

four times more likely to die during pregnancy.

While the health of the mother has a lot to do with the health

of the baby, starting from the beginning of conception and even before in terms of folic acid. So we can make a lot of difference we

believe in making sure every child has an opportunity for a healthy

start in life in this country by really focusing on the health of the

mother before and during pregnancy, access to quality prenatal

care, and involvement in systems of care that even go beyond that.

I want to say diabetes because American Indians are three times

more likely to suffer diabetes in this country. We spend a lot of our

resources in that area treating complications like end stage renal

disease, blindness and the need for lower limb amputation. I have

visited hospitals on Indian reservations, very small hospitals, 24

beds and yet 30 or more people are being dialyzed for end stage

renal disease.

We need to aggressively fund programs to prevent the 30 percent

of Type II diabetes that we can prevent with aggressive prevention

programs but also early diagnosis and tight control of diabetes. We

have research showing that with early diagnosis and tight control

of diabetes, we can prevent most of these complications, 90 percent

42

of them. We need to move to do that because we have the ability

to do it.

Breast cancer is interesting. We made progress in the 1990’s

really for the first time in terms of cancer mortality. Actually, caucasian women in this country have the highest incidence of breast

cancer.

Mr. BILIRAKIS. Forgive me a moment. Tom, we are going to have

to go a bit out of order because Dr. Sullivan has a plane to catch

and we have five votes which probably means a hour or close to

it.

Mr. BARRETT. I would yield.

Mr. BILIRAKIS. I didn’t mean that. I did want to ask if you all

would not mind if we ask Dr. Sullivan to come up right now so he

can give his testimony so we can hear what he has to say. We are

not going to have an opportunity to question him.

Mr. Satcher, I hate to have you cooling your heels for at least a

hour.

Mr. SATCHER. I have to leave and I apologize.

Mr. BILIRAKIS. We apologize but this is the way it is up here.

This is our life.

Mr. SATCHER. I feel terrible if I took time away from Dr. Sullivan.

Mr. BILIRAKIS. No, you didn’t. Dr. Sullivan, please come forward.

Dr. Sullivan is President of the Morehouse School of Medicine in

Atlanta. He has appeared before this committee many times.

Mr. Satcher, I don’t like the idea of Ms. Eshoo and Mr. Green

not having the opportunity to question you but if you have to leave,

I guess you have to leave.

Ms. ESHOO. Can I just say something Mr. Chairman. I think it

is really an honor to have you grace our hearing room and I salute

our Chairman because he is the one that made this come about.

I would like to ask for unanimous consent that members be able

to direct questions to our Surgeon General.

Mr. BILIRAKIS. Yes, written questions and you certainly don’t

mind that, do you? Without objection, that will be the case.

Dr. Sullivan, please proceed.

Tom, forgive me for interrupting, I know you understand.

STATEMENT OF LOUIS W. SULLIVAN, PRESIDENT,

MOREHOUSE SCHOOL OF MEDICINE

Mr. SULLIVAN. Thank you, Mr. Chairman.

I am pleased to have this opportunity to appear before you on

this bill that is under consideration. I will abbreviate my comments

because many of the things I was going to say have been said by

previous speakers but I would like to commend Congressman Jesse

Jackson, Congressman Norwood, J.C. Watts, John Lewis, Bennie

Thompson and Nathan Deal for their leadership and commitment

to improving the health status of Americans.

Let me say that in 1985, Secretary Margaret Heckler issued a report on Black and Minority Health in the United States which

among other things showed there was 79,000 excess deaths in the

Nation’s minority communities because of health disparities. In

1990, the Chronicle of Higher Education also pointed out that

among the grants from the National Institutes of Health, less than

43

1 percent went to minority investigators, whether they were at majority institutions or minority institutions.

In January of last year, I was asked to testify before the Senate

Appropriations Subcommittee on Labor, Health and Human Services and Education and related agencies regarding the Institute of

Medicine Study, ‘‘The Unequal Burden of Cancer.’’ This landmark

study determined that although ethnic minorities and medically

underserved populations suffer disproportionately from virtually

every form of cancer, the National Cancer Institute with a $3 billion budget, committed only $24 million or less than 1 percent of

its entire budget to the study of cancer in minority populations.

Unfortunately this study reinforced what many of us have known

for years, that the culture, the structure and the programs of NIH

as a whole serve the majority population very well but fall short

in addressing the needs of our Nation’s minority populations.

The first chart is one that shows what the Chronicle of Higher

Education has demonstrated. The gray areas represents the percentage of grants from NIH going to majority investigators, 89.7.

The percentage going to African-American investigators is 0.4; to

Hispanic investigators, 1.5; to Asian investigators, 8.1. So it shows

the disparity in the granting mechanisms at NIH.

Despite the troubling findings of the IM study the Chronicle of

Higher Education article and numerous other reports on minority

health in our country, our society has failed to take the necessary

steps to adequately address the persistent health status gaps in

our Nation’s population. If we as a Nation are to solve these complex problems, we must take an aggressive approach on all fronts.

At the core of improving the health status of all Americans is a

strong biomedical research effort aimed at understanding the factors which contribute to our Nation’s health problems.

That’s why when asked by Senator Specter at last year’s hearing

in the Senate what changes I thought were needed at NIH to improve the agency’s commitment to minority health research, I recommended elevating the Office of Research on Minority Health to

center status, the same that had occurred with the NIH Office of

Alternative Medicine, which was elevated to the Center for Complementary and Alternative Medicine.

The Genome Project was elevated to center status and the institute status. I announced the Genome Project in 1990 during my

time as Secretary. I was also pleased to work with the Congress

during my time as Secretary to establish the Office of Minority

Health Research. Notwithstanding the success of this office in addressing health status disparities and supporting research focused

on improving minority health, the magnitude of the health status

disparities problem warrants and even more aggressive approach.

Currently, this Office does not have the authority, as you’ve

heard, to play a leadership role in advancing the priority of minority health research at NIH. I’ll not go into detail——

Mr. BILIRAKIS. Doctor, could it have more authority without necessarily elevation to the center?

Mr. SULLIVAN. I think that’s very difficult to do, Mr. Chairman,

and my response also is this. We’re talking about a problem that

affects more than 25 percent of our Nation’s population, one quarVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00047 Fmt 6633 Sfmt 6602 E:\HEARINGS\64770 pfrm08 PsN: 64770
44

ter of our population are minorities. By the year 2050, as you

know, it will indeed be half of our population.

So my position is, this is a major issue. I don’t think half steps

are enough. I think it should be given the full authority for grant

making authority here, because we have done this in other instances.

So let me say that I applaud Congressman Jesse Jackson, Charlie Norwood and the 86 co-sponsors of their bill, 2391. This bipartisan legislation would establish at NIH the center that we have

discussed.

Mr. BILIRAKIS. We have less than 4 minutes, Doctor, to make our

vote.

Mr. SULLIVAN. Then Mr. Chairman, let me simply——

Mr. BILIRAKIS. Forgive me, it is with great respect.

Dr. SULLIVAN. I would like to show, as you leave, one other chart.

This addresses one of the features of the bill, that is to establish

the research endowments for supporting research at the Nation’s

four minority medical schools.

What this chart shows is the endowments at the Nation’s medical schools, that shows $1.7 billion at Harvard, $1.3 billion at

Washington University, but an average of $133 million at the Nation’s majority schools. The Nation’s four minority schools have an

average of less than $10 million.

So this bill also would help to give greater capacity for research

at the Nation’s minority medical schools.

With that, Mr. Chairman, I thank you very much.

[The prepared statement of Louis W. Sullivan follows:]

PREPARED STATEMENT OF LOUIS W. SULLIVAN, PRESIDENT, MOREHOUSE SCHOOL OF

MEDICINE

Mr. Chairman, thank you for the opportunity to testify today in support of legislation addressing the critical problem of health status disparities between our nation’s

majority and minority populations. I am pleased to be appear before you as President of the Morehouse School of Medicine in Atlanta, GA, and President Emeritus

of the Association of Minority Health Professions Schools (AMHPS).

AMHPS is an organization comprised of the twelve (12) historically black health

professions schools in the country. Combined, our institutions have graduated 60%

of all the nation’s African-American pharmacists, 50% of African-American physicians and dentists, and 75% of African-American veterinarians. Our member schools

have a historic mission of preparing graduates to practice in medically underserved

communities, and pursuing research aimed at reducing the incidence of health status disparities.

Mr. Chairman, I thank you and Congressman Brown for convening this hearing

making the issue of health status disparities a priority this year. In addition, I

would like to take a moment to recognize Congressmen Jesse Jackson, Jr., Charlie

Norwood, J.C. Watts, John Lewis, Bennie Thompson, and Nathan Deal for their

leadership and commitment to improving the health status of all Americans, particularly some of our most vulnerable citizens.

In January of last year, I was asked to testify before the Senate Appropriations

Subcommittee on Labor, Health and Human Services, Education and Related Agencies regarding an Institute of Medicine Study entitled, ‘‘The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the

Medically Underserved.’’ This landmark study determined that although ethnic minorities and medically underserved populations suffer disproportionately from virtually every form of cancer, the National Cancer Institute committed only $24 million, or less than 1% of its entire budget, to the study of cancer in minority populations in fiscal year 1997.

Unfortunately, the IOM study reinforced what many of us have known for years—

that the culture, structure and programs of NIH as a whole serve the majority population well, but fall short in addressing the needs of our nation’s minority popuVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00048 Fmt 6633 Sfmt 6621 E:\HEARINGS\64770 pfrm08 PsN: 64770
45

lations. In 1993, the Chronicle of Higher Education highlighted the chronic lack of

support for minority health research at NIH by demonstrating that only 0.4% of the

total NIH budget was dedicated to African American researchers at both minority

and majority academic institutions.

Despite the troubling findings of the IOM study, the Chronicle of Higher Education article, and numerous other reports on minority health in this country, our

society has failed to take the necessary steps to adequately address the persistent

problem of health status disparities plaguing our society. If we as a nation are to

solve these complex problems, we must take an aggressive approach on all fronts.

At the core of improving the health status of all Americans is a strong biomedical

research effort aimed at understanding the factors which contribute to our health

problems.

That is why, when asked by Chairman Specter at last year’s hearing what

changes I thought were needed at NIH to improve the agency’s commitment to minority health research, I recommended elevating the Office of Research on Minority

Health (ORMH) to ‘‘center-status’’, in the same way that the NIH Office of Alternative Medicine was recently elevated to become the Center for Complementary and

Alternative Medicine.

During the time I was HHS Secretary, I was proud to work with Congress to establish the ORMH. Notwithstanding the success of this office in highlighting health

status disparities and supporting research focused on improving minority health,

the magnitude of the health status disparities problem warrants an even more aggressive approach.

Currently, ORMH does not have the necessary authority to play a leadership role

in advancing the interests of minority health research at NIH. For example, if the

director of the Office wants to fund a research proposal he must first find another

institute or center to: 1) approve the study and 2) co-fund the project. Frequently,

these requirements have proven to be an insurmountable hurdle that result in many

worthy minority health projects being set aside. Moreover, the director of ORMH

does not have a seat at the table when the institute/center directors and the NIH

leadership formally meet to set research policy and direction. If we are to see any

improvement at NIH in the area of health status disparities, the director of ORMH

must be in a position to help set the agency’s overall minority health research agenda.

Given the challenges facing ORMH in its current form, I applaud Congressmen

Jesse Jackson, Jr., Charlie Norwood and 83 additional co-sponsors for their leadership in introducing H.R. 2391. This bipartisan legislation would establish a National

Center for Research on Domestic Health Disparities at NIH. I am also pleased that

Congressmen Lewis and Thompson have incorporated the Jackson/Norwood legislation as Title 1 of H.R. 3250, the Health Care Fairness Act.

Under these important bills, the new National Center for Research on Domestic

Health Disparities would be empowered to:

1) Participate fully with other institutes and centers in determining research policy

at NIH with respect to minority health at NIH.

2) Establish a Scientific Advisory Council to assist the director of the Center in

charting an institute-wide plan for minority health research for all of NIH.

3) Serve as a catalyst for forward-thinking, strategic planning aimed at bringing all

of NIH’s considerable resources to bear on the health status disparities crisis.

4) Make peer-reviewed grants for areas of promising research which are not being

addressed by existing institutes and centers.

5) Establish research endowment programs at health professions institutions which

have a historic mission of studying diseases that disproportionately affect minority and underserved communities. The purpose of the research endowments

is to strengthen the research capabilities of these institutions.

These changes in authority will provide the new National Center with the authority and the resources it needs to make real progress toward eliminating the

daunting gap in health status between white Americans and the nation’s minority

citizens. Anything less than these improvements will once again leave us wringing

our hands over the widening gap in health status of a segment of our population

that, in a few decades, will. comprise the majority of people in this country. Simply

stated, if we are to see meaningful, effective changes, at NIH, bold steps are necessary. I encourage the subcommittee and the Congress to establish a National Center for Research on Domestic Health Disparities at NIH this year.

Once again, thank you for the opportunity to testify this morning. I would be

happy to answer any questions that you might have.

Mr. GREEN. Mr. Chairman, I have a unanimous consent request.

I’d like to place in the record the Congressional Hispanic Caucus

46

report on Hispanic health in the United States that was done by

the Caucus, and also my opening statement.

Mr. BILIRAKIS. Without objection.

[The prepared statement of Hon. Gene Green and the report follow:]

PREPARED STATEMENT OF HON. GENE GREEN, A REPRESENTATIVE IN CONGRESS FROM

THE STATE OF TEXAS

Mr. Chairman, thank you for calling this hearing on the Health Care Fairness

Act of 1999.

As a cosponsor of this bill, I am grateful for the opportunity to address minority

health issues today and I commend Congressman Thompson and Congressman

Lewis for their work on this initiative.

Congress needs to act this year to pass comprehensive legislation on minority

health.

We should not be addressing this issue in a piecemeal fashion.

We have identified how and where research dollars should be appropriated, and

we should appropriate them.

We have identified how and where access to health care is needed and we should

provide that access.

Perhaps most importantly, we have identified that, although we are all Americans, we do have different cultures and those cultures must be taken into consideration when developing public policy.

A ‘‘one size fits all’’ approach does not work in health care research or in the provision of health care.

To be truly inclusive, we must address the needs of each of the groups that will

be represented before us today.

Nowhere is this more clear than in the Houston area, including my Congressional

District, where over 60% of the residents are African American, Hispanic or other

minorities.

In my district, each social services agency and non-profit group uses different approaches to reach their diverse clientele. At the Montrose clinic, which assists AIDS

patients, caseworkers speak close to a dozen languages including Spanish, Chinese,

Arabic, Korean and Vietnamese. Patients receive services in a culturally sensitive

manner.

Despite new efforts to provide such services, minorities continue to fall through

the cracks of America’s health care system.

Disparities in access to health care were dramatically illustrated in the recent Institute of Medicine study and we will hear more about those disparities today.

This is particularly true in urban areas such as Houston, Atlanta and Chicago.

I am pleased to have joined forces with Congressman John Lewis and others to address the unique health care needs of our cities.

As we work to increase access to health care services, one of our top focuses

should be on childhood immunizations—in Houston, more than 44% of children are

not receiving one or more of the recommended vaccines.

During the past four years my office has held a yearly immunization clinic,, where

we have vaccinated over 300 children.

After talking to families at this clinic I have learned that they avoided getting

immunizations in other places because they were afraid that their immigration status would be questioned or concerned about cost.

The outbreak of Measles that swept the country in 1989 began in Houston—and

I am fearful that another such outbreak could occur at any time. We must do more

to ensure that minority children, and all children, have access to immunizations.

In closing, I would like to give a special thanks to my colleague Ciro Rodriguez,

who has been a tireless advocate for the Hispanic population throughout Texas and

the United States.

As Chairman of the Hispanic Caucus Health Task Force he has done much to increase our understanding of, and attention to, the needs of Hispanic Children.I want

to share with you today his report on Hispanic Health in the United States, a report

that I hope you will all read and take into consideration as the legislative process

moves forward.

Thank you, I yield back the balance of my time.

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Mr. BILIRAKIS. And I would hope that we all would have an opportunity to read Dr. Sullivan’s testimony. It’s very powerful.

Mr. BROWN. Mr. Chairman, if anyone has questions to submit to

Dr. Sullivan, I’m sure we could——

Mr. BILIRAKIS. Yes, without objection, I’m sure you’re willing

to——

Mr. SULLIVAN. Oh, yes, I’d be pleased to.

Mr. BILIRAKIS. Thank you so much for being here, Doctor. Forgive me for treating you this way, but you know what it’s like here.

Mr. SULLIVAN. I understand. Thank you very much.

Mr. BILIRAKIS. Well, we’re going to have to adjourn for anywhere

from 45 minutes to an hour, depending on how long it takes us to

address five votes.

[Brief recess.]

Mr. GREENWOOD [presiding]. I’ll preside briefly.

Do we have all our witnesses here? All right, if the witnesses

could take their seats, we’ll see how many of them we don’t have.

Upon further consideration, apparently the Subcommittee Chairman has indicated that at 10 after 2, we would reconvene in an

hour. So we’ll reconvene at 10 after.

[Brief recess.]

Mr. GREENWOOD. The hour of 2:10 having arisen, we will start

and assume that the other witnesses will hear your eloquent testimony and come running in. I’ll introduce panel three, is that correct? We have Dr. Gilbert Friedell, Director for Cancer Control,

Markey Cancer Center, University of Kentucky, testifying on behalf

of the Institute of Medicine. We have Dr. Jordan Cohen, President

and CEO of the Association of American Medical Colleges. Dr.

Kevin Schulman is Associate Professor of Medicine and Director of

the Center for Clinical and Genetic Economics, Duke University

Medical Center. Dr. Anne Peterson is not here yet. Dr. John Harley

is a member and program head of the Oklahoma Medical Research

Foundation.

Mr. Friedell, if you would start us off, please.

STATEMENT OF GILBERT H. FRIEDELL, DIRECTOR EMERITUS,

MARKEY CANCER CENTER, UNIVERSITY OF KENTUCKY;

MEMBER, INSTITUTE OF MEDICINE COMMITTEE ON CANCER

RESEARCH AMONG MINORITIES AND THE MEDICALLY UNDERSERVED

Mr. FRIEDELL. Thank you, Mr. Chairman. I’m delighted to be

here, and appreciate the opportunity to testify.

I’m speaking here on behalf of the Institute of Medicine Committee, which provided this report on the Unequal Burden of Cancer: An Assessment of NIH Research and Programs For Ethnic Minorities and the Medically Underserved. I stress those last few

words, because so far much of the comment has been about minority health, where the report for NIH was something a little broader

than that.

Much of what I wanted to say has been said, so I’ll be brief about

my remarks. As you all know, one in four deaths in the country are

attributable to cancer, expected to become the leading killer in the

next century. People have referred to some of these numbers, but

I’ll repeat them that African American men are more likely to be

70

diagnosed with prostate cancer than white men. Asian Americans

are more likely to develop stomach and liver cancer. Cervical cancer is higher among Hispanic and Vietnamese American women.

African American women, though less likely to develop breast cancer are less likely to survive it.

I would point out, though, that the highest incidence in mortality

rates for lung cancer are in the rural, poor population in Appalachian Kentucky. And Native Americans have the lowest cancer

survival rates of all.

The key question, then, for researchers and public health officials, is why these differences in cancer incidence, mortality and

survival persist. The 15 member committee that I served on looked

at these questions, assessed how NIH prioritizes cancer research

among minority and medically underserved populations, how it applies research findings to prevention and treatment. We looked at

the adequacy of procedures related to including minorities in clinical trials, and the communication of these results to the general

public.

I’d like to make five particular points this afternoon summarizing some of these major findings, and you’ll appreciate, these are

five brief points out of a report of several hundred pages. No. 1,

better surveillance efforts are needed to provide a more complete

picture of the burden of cancer among minority and medically underserved individuals. The report, you understand, was about cancer, not about health in general.

Second, research is needed on the reasons for the disparities as

reflected by the burden of disease data generated by cancer surveillance. Third, that research is particularly needed on the medically

underserved, a category which cuts across race and ethnicity. Four,

as currently constituted, neither the Office of Special Populations

Research at NCI nor the Office of Research on Minority Health at

NIH have the authority, budget or other support mechanisms to effectively coordinate, stimulate and facilitate research for minorities

and medically underserved groups. And five, the target for reducing cancer mortality would be achieving the lowest rates of cancer

mortality for selected cancers seen among different populations.

And I’ll elaborate briefly on each of those points.

The first one about surveillance, a critical first step is to pinpoint

exactly what differences exist among racial and ethnic groups, as

well as socioeconomic groups. By legislation, the National Cancer

Institute’s Surveillance Epidemiology End Results program is

charged with this responsibility as far as cancer is concerned, by

monitoring incidence of mortality and survival rates. It’s the closest

thing we have to a national report, but it’s severely limited in a few

areas.

Several groups are not covered in the SEER program. In order

for it to be most effective, the committee recommended it should be

expanded to include populations not covered, such as lower income

or poverty level whites, especially those living in rural areas, for

example Appalachia; Hispanics of all national origins; African

Americans living in rural communities, particularly the south; and

the American Indian population. Furthermore, the results should

be correlated with the State cancer registries that are being develVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00074 Fmt 6633 Sfmt 6602 E:\HEARINGS\64770 pfrm08 PsN: 64770
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oped under the CDC program of the National Program Cancer Registries.

As far as disparities are concerned, we believe NCI should give

consideration to the magnitude of the cancer problems in different

ethnic groups. The research needs of these groups and of medically

underserved groups could be identified primarily on the burden of

disease which is found in each of these populations. Without setting boundaries to begin with of race and ethnicity, let’s look at the

burden of disease which is found by inadequate surveillance program. This was the gist of one of our recommendations.

Third, while a disproportionately large share of African Americans and Hispanics live at or below the poverty level, poor whites,

particularly the rural poor, constitute the largest group of poverty

level individuals. According to the U.S. Bureau of the Census, in

1996, there were approximately 10 million African Americans, approximately 7 million Hispanics, approximately 1.3 million Asians

or Pacific Islanders, 714 million American Indians and almost 22

million whites living below the poverty line. These individuals suffer from rates of disease and disability as high or in some cases

higher than racial and ethnic minorities and should be a higher

priority in NIH’s research efforts.

Insofar as the Office of Research on Minority Health is concerned, we believe NIH needs to formulate a blueprint or coordinated plan for addressing questions related to minorities and the

medically underserved. Within NCI, the Office of Special Populations Research is charged to serve as the Director’s eyes and ears

on research needs of minority groups, the low income and low literacy populations, the blue collar workers and other populations

considered to be at a higher risk for cancer. But this office lacks

the authority and the resources to coordinate an extensive program

of research among ethnic minorities.

Similarly, the Office of Research on Minority Health, which is to

coordinate the studies on ethnic minority health problems, but its

impact also is limited by the size of its budget and its lack of authority over NIH research programs. It has no involvement, furthermore, with the medically underserved who are not recognizable

by race or ethnicity. That office should more actively coordinate,

plan and facilitate cancer research relevant to ethnic minorities

and medically underserved populations across NIH centers and institutes.

Insofar as reducing cancer mortality by achieving the lowest

rates of cancer mortality for selected cancers, what we mean by

this is that there are low rates of some cancers. For example, prostate cancer among Chinese, high rates among African Americans.

We suggested that it would be important to look at those populations that have low rates of cancer as well as looking only at the

populations that have high rates of cancer.

My more extensive remarks have been submitted to the Committee. I would like to point out two particular things, though, that

may be relevant. One of them is that there’s been much discussion

about various rates of diseases beyond cancer in minority populations. A few months ago, the Lexington Herald Leader produced

a supplement which relates to health disorders in Appalachian or

Eastern Kentucky, a 99 percent rural white population. You’ll find

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on reading this that the rates for diabetes, hypertension, coronary

heart disease and some cancers are almost as high, in some cases

higher, than rates that have been reported for recognizable minorities. I think this may be an important thing for the group.

In addition, there may be some reprints of specific issues which

perhaps I could add to the Committee’s files later. But the bulk of

my testimony really relates to the IOM committee report. Thank

you very much.

[The prepared statement of Gilbert H. Friedell follows:]

PREPARED STATEMENT OF GILBERT H. FRIDELL, DIRECTOR EMERITUS, MARKEY

CANCER CENTER, UNIVERSITY OF KENTUCKY

Good morning Chairman Bilirakis and members of the Subcommittee. On behalf

of the entire IOM Committee on Cancer Research Among Minorities and the Medically Underserved, I am pleased to be here today to present our report.

One in four deaths in this country is attributable to cancer, which is expected to

become the country’s leading killer in the next century. Recent scientific gains have

fueled the first overall reduction in deaths from cancer, but not all groups in the

U.S. population have seen an improvement. Poor people and some ethnic minorities

are more prone to certain types of cancer and are less likely to survive it than the

rest of the population.

African-American men, for example, are more likely to be diagnosed with prostate

cancer than white men. Asian Americans are more likely develop stomach and liver

cancer. Cervical cancer is higher among Hispanic- and Vietnamese-American

women. African-American women, though less likely than others to develop breast

cancer, are also less likely to survive it. Further, lower-income whites in rural areas

such as Appalachia have some of the highest rates of specific types of cancer in the

country. And Native Americans have the lowest cancer survival rates of all.

A key question for researchers and public health officials is why these differences

in cancer incidence, mortality, and survival rates persist.

The 15-member Institute of Medicine committee that I served on examined these

questions, and assessed how the National Institutes of Health (NIH) prioritizes research on cancer among minority and medically underserved populations and how

it applies research findings to prevention and treatment programs. We also looked

at the adequacy of procedures related to including minorities in clinical trials, as

well as the communication of research results to these groups and other key issues

to the public. In the report, published in January, 1999, we offered recommendations that we hope not only will help improve the health of minorities and the medically underserved, but everyone in our increasingly diverse society.

A critical first step is to pinpoint exactly what differences exist among racial and

ethnic groups, as well as socioeconomic groups. By legislation, the National Cancer

Institute’s (NCI) Surveillance, Epidemiology, and End Results (SEER) program is

assigned the responsibility of assessing the burden of cancer in the population by

continuously monitoring cancer incidence, mortality, and survival rates. It is the

closest thing the country has to a longitudinal national cancer database, but its usefulness is diminished by limitations in the way data are collected.

Unfortunately, several key groups are not adequately covered in the SEER program. In order for this program to be most effective, the committee recommended

it should be expanded to include populations not covered, such as lower-income or

poverty level whites, especially those living in rural areas such as Appalachia; Hispanics of all national origins; African Americans living in rural communities, particularly in the South; and American Indian populations. Further, this database

should be coordinated with newer state databases to create a national registry with

uniform methods of data collection and analysis.

In accordance with the guidelines of the federal Office of Management and Budget, NIH classifies the population into one of four racial categories—White, Black,

Asian or Pacific Islander, or Native American. This method of classification was not

intended for epidemiological research and, in fact, is not consistent with current scientific thinking. There are no known biological boundaries that justify the division

into races.

We recommend that NCI place a greater emphasis on the differences in cancer

among ethnic groups and those of low socioeconomic status, with a view to determining the roles that diet, lifestyle, and customs play in varying rates of cancer.

We need to take advantage of the ethnic diversity of the American population to

73

explore, for example, why Chinese American men have such low rates of prostate

cancer compared with African American men.

Overall, we believe that NIH needs to formulate a blueprint or a coordinated plan

for addressing questions related to cancer among minorities and the medically underserved. NIH’s Office of Research on Minority Health coordinates studies on ethnic minority health problems, but its impact is limited by the size of its budget and

other constraints, and it has no involvement with the medically underserved who

are not recognizable by race or ethnicity. That office should more actively coordinate, plan, and facilitate cancer research relevant to ethnic minorities and medically

underserved populations across NIH centers and institutes. Within the National

Cancer Institute, the Office of Special Populations Research lacks the authority and

resources to coordinate an extensive program of research on cancer among ethnic

minorities. This office should be given greater authority to expand NCI’s research

in these areas.

NCI also should improve its estimates of the money it spends on the health needs of minorities and the medically underserved. NCI reported spending about $124 million in fiscal year 1997 for research and training programs addressing cancer in

these populations. NCI’s estimate is derived by calculating the percentage of minorities enrolled in research studies. We believe that NCI should base its estimate on

the research questions involved rather than on the percentage of minorities in its

studies. Such a coding procedure would allow NCI to accurately provide data on the

number of studies that pose research questions specifically designed to better understand the burden of cancer among minority and medically underserved populations,

and the amount of funds allocated to these studies. When one considers the greater

burden of cancer among minorities and the increasing diversity of the U.S. population, NCI’s current allocation is too low.

In setting research priorities, NCI places strong emphasis on research that capitalizes on scientific opportunities, and rightly so. However, we believe that NCI

should give consideration to the magnitude of the cancer problem in different ethnic

groups. The research needs of ethnic minority and medically underserved groups

should be identified on the basis of the burden of disease in these populations, with

an assessment of the most appropriate areas of research. These areas of needed research may be stimulated by requests for applications or other targeted efforts from

NIH institutes.

Participation in clinical trials among minorities has improved in recent years, to

the point where their participation in NCI-sponsored cancer treatment trials is proportionate to the burden of disease in these populations. However, participation in

prevention trials remains low. The absence of minorities in some of these trials—

for example the recently concluded tests of tamoxifen to prevent breast cancer in

women at high risk for the disease—raises questions about how applicable the results are to minority populations.

As NIH and NCI continue to review strategies for communicating with the public,

they should give special attention to the needs of ethnically diverse and medically

underserved communities. Among the key issues that remain is how to obtain truly

informed consent from research subjects who experience language and literacy barriers.

NIH should establish a formal system of reporting to Congress and the public on

cancer studies for ethnic minorities and medically underserved groups. Reports

should include details on the number and type of research programs specifically targeted to these groups, and the contributions of ethnic minority scientists and community groups representing minorities and the medically underserved to the research priority-setting process. At the same time, NCI should improve efforts to disseminate information about cancer to patients, clinicians, and others in ethnic minority and underserved populations, and create a system to assess effectiveness.

Cancer survivors from these groups should be tapped as important resources for

educating others in their communities about cancer.

Finally, the committee concluded that the diversity of the American population offers a great opportunity for exploring all of the possible causes of cancer. For example, we asked what might happen if all Americans had the same rate of cancer at

each site as the lowest rate of any ethnic group. For example, if all Americans had

the low rate of lung cancer as Hispanics, mortality due to lung cancer would be reduced by 50 percent. This is not to suggest that those groups that experience low

rates of some forms of cancer should not be the focus of our research and prevention

efforts; rather, research on the dietary patterns, lifestyles, and health behaviors of

lower-risk groups offers an opportunity to improve the health of higher-risk groups.

It is a goal worth pursuing as long as there were not promises of quick results.

Throughout our study, the National Cancer Institute was generous in providing

the information that we requested, and it is clear to us that NCI is undergoing dyVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00077 Fmt 6633 Sfmt 6621 E:\HEARINGS\64770 pfrm08 PsN: 64770
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namic change. In fact, some of our suggestions for improvement today have already

been suggested internally at NCI and are in the process of being implemented. We

commend NCI’s plans to increase its commitment to behavioral research, especially

if some of that research is specifically targeted toward minorities and the medically

underserved.

The National Cancer Institute is a great national resource that is vigorously pursuing the goal of reducing cancer in America. From the beginning of the ‘‘War on

Cancer’’ it has been forced to grapple with the continuous demand for quick results.

There was even a strong notion that the problem of cancer would be solved by 1976.

But we now know that there are no quick fixes in cancer research. A big breakthrough is often the result of years of patient and sometimes unrecognized effort.

Cancer is not one but more than 100 diseases. We hope our recommendations will

help NCI and all of NIH tackle this difficult health problem in order to further the

health of all Americans.

Mr. GREENWOOD. Thank you very much for your testimony, sir.

Dr. Cohen.

STATEMENT OF JORDAN J. COHEN, PRESIDENT AND CEO,

ASSOCIATION OF AMERICAN MEDICAL COLLEGES

Mr. COHEN. Thank you very much, Mr. Chairman, members of

the Committee. My name is Jordan Cohen, and I’m President of

the Association of American Medical Colleges, which represents

U.S. medical schools and major teaching hospitals in our country,

medical students, residents and faculty.

The Association is pleased to endorse the Health Care Fairness

Act, H.R. 3250, and we commend the Committee for holding this

hearing. We must do more as a country to find solutions to the existing critical disparities in health status and access to quality

health care among significant segments of our Nation’s population.

While it is important that everyone involved in providing health

care to patients work to eliminate health disparities, medical

schools and teaching hospitals have a unique responsibility both to

integrate the knowledge of these disparities into the education of

physicians and the delivery of health care, and to ensure that these

problems are high on the research agenda, historically the AAMC

has taken a leadership role in addressing issues related to inequalities and disparities in medicine. We have played an active role in

enhancing the diversity of those providing health care and assisting our member institutions to advance the teaching and education

and evaluation of cultural competence.

AAMC supports the establishment of a center for research on minority health at the National Institutes of Health, and the development of a comprehensive research plan for all minority health research at the NIH in consultation with other NIH institutes and

centers. The causes of health disparities are complex, and include

a mix of socioeconomic, cultural and behavior factors, as we learned

from Dr. Satcher earlier today.

Few, if any, diseases are unique to particular racial or ethnic

groups. But patterns of prevalence, as we’ve heard, and of severity,

differ widely in various racial and ethnic populations. Research on

minority health issues should be incorporated into the mission of

each of the NIH institutes and centers, building on the scientific

and clinical expertise that resides in their programs.

The bill also authorizes the submission of the center’s budget directly to the President and to Congress. Traditionally, the Association has not supported the creation of such a separate budget byVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00078 Fmt 6633 Sfmt 6602 E:\HEARINGS\64770 pfrm08 PsN: 64770
75

pass for specific areas of research. However, the critical need to enhance the research efforts to address minority health disparities is

sufficient, in our view, to justify making an exception in this case

to our longstanding policy opposing bypass budgets.

AAMC has consistently and strongly advocated additional funding for the NIH’s effort to attract and retain more under-represented minorities into careers in biomedical and behavioral research. AAMC supports the establishment of centers of excellence

for research as another positive initiative to achieve a more diversified research work force. We also believe that any institution with

a well documented and sustained commitment to addressing issues

of minority health should be eligible for these awards.

The Association is especially pleased with the provisions in Title

IV on medical education, which will enable health professional

schools to enhance and expand existing programs to address cultural competency. In particular, we note that the legislation would

provide support for increased curricula and faculty development for

cultural competency at all levels of health professions education,

including continuing education.

In conclusion, we believe that the disparities in health status as

a function of race and ethnicity are among the most pressing challenges that confront our Nation. AAMC thanks the Subcommittee

for holding this hearing to examine these issues, and urges Congress to move forward when considering and passing H.R. 3250.

Thank you very much.

[The prepared statement of Jordan J. Cohen follows:]

PREPARED STATEMENT OF JORDAN J. COHEN, PRESIDENT AND CEO, ASSOCIATION OF

AMERICAN MEDICAL COLLEGES

The Association of American Medical Colleges (AAMC) is pleased to have this opportunity to testify in support of the Health Care Fairness Act, H.R. 3250. Representing the nation’s 125 accredited allopathic medical schools, nearly 400 major

teaching hospitals and health care systems, 91 academic and professional societies

representing more than 87,000 faculty members, and the nation’s 167,000 medical

students and residents, the AAMC commends the subcommittee for holding this

hearing. Our country must do more to find solutions to the existing, critical disparities in health status and access to quality health care among significant segments

of this nation’s population.

The AAMC, whose overarching mission is the improvement of the health of the

nation, is deeply concerned about these disparities. While it is important that everyone involved in providing health care to patients work to eliminate health disparities, medical schools and teaching hospitals have a unique responsibility to integrate

knowledge of these disparities into the education of physicians and the delivery of

health care, and to ensure that these problems are high on the research agenda.

Historically, the AAMC has taken a leadership role in addressing issues related to

inequalities or disparities in medicine. We have played an active role in enhancing

the diversity of those providing health care and in assisting our member institutions

to advance the teaching and evaluation of cultural competence.

For more than 30 years, the AAMC and its member medical schools and teaching

hospitals have committed themselves to increase the racial and ethnic diversity in

the medical profession, including establishing a division within the AAMC to address minority issues, sponsoring workshops highlighting the importance of noncognitive variables (e.g., leadership, determination, altruism, compassion, maturity,

coping capabilities, communication skills) in the admissions process, promoting the

development of a minority affairs infrastructure within medical schools, creating

two AAMC Task Forces to identify problems and solutions related to increasing minority enrollment, launching in 1991 Project 3000 by 2000, and most recently, organizing and staffing the Health Professionals for Diversity coalition.

The AAMC is pleased to endorse the Health Care Fairness Act, H.R. 3250, which

identifies a series of pressing issues that affect the health of a significant portion

of our nation’s population. We believe that the disparities in health status and acVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00079 Fmt 6633 Sfmt 6621 E:\HEARINGS\64770 pfrm08 PsN: 64770
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cess to health care among various racial and ethnic groups result from multiple

causes, and that the multiple solutions proposed in this legislation are needed to

eradicate these inequities.

The AAMC supports the establishment of a Center for Research on Minority

Health at the National Institutes of Health (NIH) and the development of a comprehensive research plan for the conduct and support of all minority health research

at the NIH in consultation with all other NIH institutes and centers, as called for

in Title I of the bill. The causes of health disparities are complex and include a mix

of socioeconomic, cultural, and behavioral factors. Few if any diseases are unique

to particular racial and ethnic groups, but patterns of prevalence and severity differ

widely in various racial or ethnic populations. Accordingly, the AAMC believes that

research on minority health issues should be incorporated into the mission of each

of the NIH institutes and centers, building upon the scientific and clinical expertise

that resides in these programs. The NIH’s success is based on its ability to marshal

the full weight of all of its institutes to solve fundamental scientific questions and

to address the most urgent challenges of disease.

We note that Title I also authorizes the submission of the Center’s budget directly

to the President and Congress. Traditionally, the Association has not supported the

creation of such a separate budget by-pass for specific areas of research. However,

the critical need to enhance the research efforts to address minority health disparities is sufficiently to justify making an exception to our long-standing policy opposing by-pass budgets.

The AAMC has long been concerned about the need to attract and retain more

underrepresented minorities into careers in biomedical and behavioral research, and

has consistently and strongly advocated additional funding for the NIH’s efforts in

this area. The AAMC supports the establishment of Centers of Excellence for Research as another positive initiative to achieve the goal of a more diversified research workforce. We also believe that any institution with a well-documented commitment to addressing issues of minority health should be eligible for these awards.

The bill states that eligible institutions must have significant numbers of minority

students and faculty without defining what is meant by significant. We would suggest that this wording be modified so as not to leave the impression that research

on minority health issues is, or should be, the concern only of minority researchers.

We look forward to an opportunity to work with members of the subcommittee to

assure that this program will be designed to encourage as many institutions as possible to develop substantive programs of research in these areas.

The Association is especially pleased with the provisions in Title IV on medical

education, which will enable health professions schools to enhance and expand existing programs to address cultural competency. In particular, we are pleased to note

the legislation would provide support for increased curricula and faculty development for cultural competency at all levels of health professions education, including

continuing education. These programs will complement and enhance the AAMC’s

education initiatives, including the dissemination of specific objectives for medical

education, the recognition by accrediting bodies on the importance of requiring the

inclusion of cultural issues in the curriculum, and the mounting of faculty development activities to enhance the teaching and evaluation of cultural awareness.

The bill also authorizes an information clearinghouse for curricula to reduce racial

and ethnic disparities in health care and health outcomes, and a national conference

on continuing health professions education as a method to reduce such disparities.

The AAMC believes that both of these initiatives will promote greater dissemination

of successful efforts to reduce health disparities.

In conclusion, the disparities in health status as a function of race and ethnicity

are among the most pressing challenges that confront us as a nation. The AAMC

thanks the subcommittee for holding this hearing to examine these issues and urges

Congress to move forward in considering and passing H.R. 3250.

Mr. GREENWOOD. Thank you, Dr. Cohen, very much, for your testimony.

Dr. Schulman.

STATEMENT OF KEVIN A. SCHULMAN, ASSOCIATE PROFESSOR

OF MEDICINE AND DIRECTOR OF THE CENTER FOR CLINICAL AND GENETIC ECONOMICS, DUKE UNIVERSITY MEDICAL CENTER

Mr. SCHULMAN. Mr. Chairman, thank you, and Mr. Brown, and

other members of the Committee.

77

Thank you very much for inviting me to appear before the Committee today. I want to try and provide a framework and rationale

for the medical education sections of the Health Care Fairness Act,

especially Section 201, which refers to grants for medical education

curriculum development.

Medical literature has carefully documented racial and ethnic

differences and the use of medical therapies for patients with many

conditions. We’ve heard a lot on this today. One point to emphasize

here is that these differences in treatments have been shown to result in differences in patient survival in and of themselves.

One issue not addressed by this entire body of literature is

whether physicians who are contributing to these differences are

making different treatment recommendations based on patient race

and sex. We explored this concept directly in a major study published last year in the New England Journal of Medicine.

We assessed physicians’ treatment recommendations for simulated patients who differed from each other only on the basis of

race and sex. We include eight patient actors in the experiment, 4

black, 4 white, 4 male and 4 female. Their pictures are included

in the testimony I submitted to the Committee.

Overall, we found that for identical patients, physicians were less

likely to refer blacks compared to whites, and women compared to

men, for cardiac catheterization, and that the lowest referral rates

were for black women. Further, we were able to show that these

results were not influenced by patient personality.

In addition, the physicians rated the black patient actors of being

of lower socioeconomic status than the white patient actors, despite

the fact that all patients had identical job descriptions, lived in the

same location, were dressed in the same clothing and had the same

health insurance.

In this carefully controlled experiment, we were able to demonstrate that patients’ characteristics influenced physician’s recommendations for cardiac catheterization. The social psychology literature suggests that all of us characterize new individuals when

we meet them using an automatic or subconscious process. These

characterizations incorporate societal attitudes and stereotypes into

a label that we attach to other people.

The absence of bias indicates an ability to consciously override

these automatic characterizations in relating to other people. Our

experiment suggests that a brief interview with a new patient may

not yield sufficient information to override these automatic characterizations. These subconscious characterizations may then contribute to physicians’ treatment recommendations for identical patients observed in our study.

The implication of this study is a disturbing one, that physicians

are contributing to disparities in health care between blacks and

whites in this country. This is not to say that physicians’ actions

are responsible for all or even a majority of the racial disparities

in medical treatment that have been observed. In fact, we cannot

assess the relative contributions of the many factors shown to affect differences in procedure utilization across patient race. In addition, we haven’t looked at Hispanics or other races in our experiment.

78

However, any contribution by physicians to these disparities cannot be tolerated, as Mr. Coburn said this morning.

While disturbing, these results also offer us hope. As Thurgood

Marshall said, what you have to do, white or black, you have to

recognize that you have certain feelings about the other race, good

or bad, and get rid of them. But you can’t get rid of them until you

recognize you have them.

The medical education section of the Health Care Fairness Act

offers an opportunity to directly address this issue. The legislation

will allow us to develop new educational programs to target the

subconscious biases that seem to explain a reversible component of

the disparities in health care between blacks and whites. Finding

the optimal method of implementing such a sensitive curriculum is

an issue of major concern that would be addressed in the research

effort called for in this legislation.

The public will not be assured that the health care system is

truly blind to race until we are able to show that these training

programs are effective. Hence, the importance of the evaluation

component of these grants. These evaluation efforts will allow us

to understand what works in developing cultural competency curricula, and to rapidly disseminate effective programs to other sites,

In this increasingly multicultural society, the issue of how to ensure that patient characteristics no longer influence clinical decisionmaking is of critical importance in designing medical school

residency and continuing education curricula, and ensuring appropriate clinical practice.

Thank you very much for asking me to present here with you

today.

[The prepared statement of Kevin A. Schulman follows:]

PREPARED STATEMENT OF KEVIN A. SCHULMAN, ASSOCIATE PROFESSOR OF MEDICINE, DIRECTOR, CENTER FOR CLINICAL AND GENETIC ECONOMICS, DUKE UNIVERSITY

MEDICAL CENTER

Mr. Chairman and distinguished members of the Committee: Thank you very

much for inviting me to appear before the Committee today. I want to try to provide

a framework and rationale for Title II of the Health Care Fairness Act of 1999, specifically section 201, which refers to grants for medical education curriculum development.

Large-scale epidemiologic studies have reported race and sex differences in management of patients with chronic diseases in the United States. In the vast majority

of these studies, investigators have found that blacks are less likely than whites to

undergo procedures in both inpatient and outpatient settings. Let me first review

some of these data with you.

In a recent article, we reviewed more than 30 major epidemiologic studies assessing differences in cardiac procedure utilization rates between blacks and whites.

While these studies varied in the number of patients included, in the types of data

analyzed, and in the specific clinical conditions under assessment, almost all found

that blacks compared to whites were less likely to undergo cardiac catheterization,

cardiac angioplasty, or coronary artery bypass surgery.

While disturbing, these epidemiologic studies did not suggest either the reasons

for differences in clinical practice or the implications of these differences for individual patients. Many of the authors felt that underlying structural factors within

the health care system were responsible for the major portion of their findings, including differences in access to private health insurance. However, certain portions

of this body of research suggest that insurance coverage is not the only reason for

differences in access to procedures. In an important study of patients within a single

health care system—the Veterans Health Administration—Dr. Eric Peterson found

results similar to those reported in other epidemiologic studies; yet all patients at

VA medical centers had the same insurance program, which eliminates insurance

as an explanation for these differences. Similarly, Bruce Vladeck found, when he

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was Administrator of the Health Care Financing Administration, that black patients

within the Medicare program were less likely than white patients to undergo cardiac procedures, again providing evidence that differences in insurance coverage do

not fully explain the differential use of procedures in blacks compared to whites.

Even with the important information that insurance may not be the only factor

responsible for differences in access to procedures, controversy continued about

whether differential access results in worse outcomes for minority patients. Dr. Peterson subsequently developed data that suggest that differences in mortality between blacks and whites exist even after adjustment for clinical factors, but are no

longer apparent when differences in treatment between blacks and whites are included in statistical analysis. This was one of the first studies to demonstrate that

differences in access to care result in differences in survival for a specific population

of patients.

Unfortunately, as we have looked beyond cardiovascular disease, we have found

differences in access to other major medical procedures for blacks compared to

whites, including the treatment of stroke patients and the use of bone marrow

transplantation for patients with leukemia and lymphoma. In an important paper

late last year, Dr. Peter Bach of Memorial Sloan-Kettering Cancer Center found

that blacks compared to whites were less likely to undergo surgical resection for

early-stage, non-small-cell lung cancer. Furthermore, Dr. Bach was able to demonstrate that differences in mortality between black and white patients were directly related to differences in surgical therapy received by those patients.

Another significant study contributing to this field looked at patients with endstage renal disease. The study examined whether patients with end-stage renal disease in the Medicare program were referred for evaluation for kidney transplantation. Once again, black patients compared with white patients were less likely to

be referred for surgical procedures. In this study, however, the authors were also

able to directly assess patients’ desires for kidney transplantation. The authors reported that differences in patients’ desires between blacks and whites did not explain differences in access to transplant evaluation.

Dr. William Owen at Duke University Medical Center looked at patients undergoing dialysis at outpatient dialysis centers across the country. He found that blacks

compared to whites were less likely to receive optimal doses of dialysis in 1993.

However, through careful monitoring and feedback using clinical guidelines and

clinical performance measures, this disparity in care was almost eliminated over a

four-year period. Dr. Owen’s study provides some evidence that physicians are contributing to disparities in care between blacks and whites.

We explored this concept directly in a major study published last year in the New

England Journal of Medicine. We were especially interested in exploring whether

physicians contributed to differences in procedure rates among blacks and whites

by assessing physicians’ recommendations for simulated patients who differed from

each other only on the basis of race and sex. Using a computer survey instrument,

we presented groups of practicing physicians with clinical cases that varied from

each other only on the basis of six patient variables, including patient age, race, sex,

type of chest pain, cardiac history, and stress test results. Eight trained patient actors—four blacks, four whites; four men, four women; four 55-year-olds, four 70-

year-olds—were asked to record three identical interviews representing three distinct types of chest pain. We then asked 720 primary care physicians to interview

one of the eight patient actors by reviewing one of 24 video segments. In this study,

a total of 144 different cases were available for assessment by individual physicians.

Overall, we found that for identical patients, physicians were less likely to refer

blacks compared to whites and women compared to men for cardiac catheterization,

and that the lowest referral rates were for black women. In an extensive series of

analyses, we were able to show that these results were not influenced by patient

personality. In addition, the physicians uniformly rated the black patient actors as

being of lower socioeconomic status than the white patient actors, despite the fact

that all patients had identical job descriptions, lived in the same locations, were

dressed in the same clothing, and had the same health insurance.

In this carefully controlled experiment, we were able to demonstrate that patients’

characteristics influence physicians’ recommendations for cardiac catheterization.

The social psychology literature suggests that all of us characterize new individuals when we meet them using an automatic process. These characterizations occur

subconsciously and incorporate societal attitudes and stereotypes. The absence of

prejudice indicates an ability to consciously override these automatic characterizations.

Our experiment suggests that a brief interview with a new patient may not yield

sufficient information to override these automatic characterizations. These subVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00083 Fmt 6633 Sfmt 6621 E:\HEARINGS\64770 pfrm08 PsN: 64770
80

conscious characterizations may then contribute to physicians’ treatment recommendations for identical patients observed in our study.

The implication of these studies is a disturbing one: that physicians are contributing to disparities in health care between blacks and whites in this country. This

is not to say that physicians’ actions are responsible for all or even the majority of

the racial disparities in medical treatment. In fact, we cannot assess the relative

contributions of the many factors shown to affect differences in procedure utilization

across patient race. However, any contribution by physicians to these disparities can

not be tolerated.

The results of the studies I have reviewed suggest that physicians—though dedicated professionals—are similar to everyone else in society in that they may harbor

subconscious attitudes and biases toward groups. These attitudes and biases, even

at the subconscious level, may manifest themselves inadvertently when physicians

make different treatment recommendations based solely on characteristics such as

race. But these results also offer us hope and the opportunity to improve ourselves.

As Thurgood Marshall said, ‘‘What you have to do—white or black—you have to recognize that you have certain feelings about the other race, good or bad. And then

get rid of ’em. But you can’t get rid of them until you recognize them.’’

How do we get rid of subconscious biases in the case of the individual physician?

The potential for subconscious bias to influence clinical decision-making is a much

more difficult topic to address from an educational and regulatory perspective than

overt bias would be under civil rights law. There are currently no compelling studies

that test and demonstrate the efficacy of particular approaches to this problem in

medical education. While the American Medical Association has recently called for

initiatives to increase awareness of racial disparities—in medical school curricula,

medical journals, professional conferences, and peer review activities—only a small

minority of U.S. medical schools reported that they had a cross-cultural competency

component to their curriculum. In a recent survey of U.S. medical schools, only 13

of the schools responding to the survey reported offering a course designed to explain the delivery of health care in ethnically diverse populations.

Even in those medical schools that have implemented a ‘‘cross-cultural curriculum,’’ there are no data regarding the effectiveness of current educational approaches. The need to explore the potential for cross-cultural education to reduce

subconscious biases on the part of clinicians was recently highlighted in a study

published in the American Journal of Medicine. In the study, when interviewing

identical patients with identical complaints of chest pain, the participating medical

students overall rated the quality of life lower for a 55-year-old black woman than

for a 55-year-old white man, despite the fact that the students thought the black

woman had less severe heart disease. It seems that our medical students are entering medical school with subconscious biases about patients, the same biases we revealed in our 1999 study of practicing physicians.

The medical education section of the Health Care Fairness Act of 1999 offers tremendous hope to the millions of Americans who have been deeply affected by these

studies. The bill calls for the development of grants for medical education curriculum development and for research projects and demonstration projects to develop curricula designed to reduce disparities in health care outcomes, including faculty development and cultural competency programs for graduate and undergraduate medical education. These grants will allow us to develop new educational

programs to target the subconscious biases that seem to explain a reversible component of disparities in health care.

Adequately addressing this issue will require self-awareness on the part of individuals regarding their own perceptions and biases, and a willingness to find ways

of overcoming these biases in both working with and treating patients. Finding the

optimal method of implementing such a sensitive curriculum is an issue of major

concern that would be addressed through the research effort called for in this legislation.

Finally, the public will not be assured that the health care system is truly ‘‘blind’’

to race until we show that these training programs are effective; hence, the importance of the evaluation components of these grants. These evaluation efforts will

allow us to understand what works in developing cultural competency curricula and

to rapidly disseminate effective programs to other sites.

In this increasingly multicultural society, the issue of how to ensure that patient

characteristics no long influence clinical decision-making is of critical importance in

designing medical school, residency, and continuing education curricula and in ensuring appropriate clinical practice. We have observed differences in treatment resulting in differences in survival for patients with cardiovascular disease and lung

cancer. Our previous work suggests that physicians contribute to these differences

by making different treatment recommendations based on patient race. Yet students

81

in most medical schools today are not taught about issues of race or how their own

subconscious biases may interfere with access to treatment. The Health Care Fairness Act of 1999 offers a first step to ensuring that all patients will be offered equal

access to life-saving medical therapy, regardless of their race. The American public

should expect no less from its health professionals.

References

American Medical Association. Racial and Ethnic Disparities in Health Care. PolicyFinder H350.974. http://www.ama-assn.org/advocacy/healthpolicy/policy.htm.

Ayanian JZ, Epstein AM. Differences in the use of procedures between women and men hospitalized for coronary artery disease. New England Journal of Medicine. 1991; 325: 221-225.

Bach PB, Cramer LD, Warren JL, Begg CB. Racial differences in the treatment of early-stage

lung cancer. New England Journal of Medicine. 1999; 341:1198-1205.

Carlisle DM, Leake BD, Shapiro MF. Racial and ethnic disparities in the use of cardiovascular

procedures: associations with type of health insurance. American Journal of Public Health. 1997;

87:263-267.

Chandra NC, Ziegelstein RC, Rogers WJ, et al. Observations of the treatment of women in

the United States with myocardial infarction: a report from the National Registry of Myocardial

Infarction. Archives of Internal Medicine. 1998; 158:981-988.

Devine PG. Stereotypes and prejudice: their automatic and controlled components. Journal of

Personality and Social Psychology. 1989; 56:5-18.

Giles WH, Anda RF, Casper ML, Escobedo LG, Taylor HA. Race and sex differences in rates

of invasive cardiac procedures in US hospitals: data from the National Hospital Discharge Survey. Archives of Internal Medicine. 1995; 155:318-324.

Gornick ME, Eggers PW, Reilly TW, Mentnech RM, Fitterman LK, Kucken LE, Vladeck BC.

Effects of race and income on mortality and use of services among Medicare beneficiaries. New

England Journal of Medicine. 1996; 335:791-799.

Hannan EL, Kilburn H. O’Donnell JF, et al. Interracial access to selected cardiac procedures

for patients hospitalized with coronary artery disease in New York State. Medical Care. 1991;

29:430-431.

Johnson PA, Lee TH, Cook EF, Rouan GW, Goldman L. Effect of race on the presentation

and management of patients with acute chest pain. Annals of Internal Medicine. 1993; 118:593-

601.

Kostis JB, Wilson AC, O’Dowd K, et al. Sex differences in the management and long-term outcome of acute myocardial infarction: a statewide study. Circulation. 1994; 90:1715-1730.

McBean AM, Warren JL, Babish JD. Continuing differences in the rates of percutaneous coronary angioplasty and coronary arter bypass graft surgery between elderly black and white Medicare beneficiaries. American Heart Journal. 1994; 127:287-295.

Mitchell JM, Meehan KR, Kong J, Schulman KA. Access to bone marrow transplantation for

leukemia and lymphoma: the role of sociodemographic factors. Journal of Clinical Oncology.

1997; 15:2644-2651.

Peterson ED, Wright SM, Daley J, Thibault GE. Racial variation in cardiac procedure use and

survival following acute myocardial infarction in the Department of Veterans Affairs. Journal

of the American Medical Association. 1994; 271:1175-1180.

Peterson ED, Shaw LK, DeLong ER, Pryor DB, Califf RM, Mark DB. Racial variation in the

use of coronary-revascularization procedures: Are the differences real? Do they matter? New

England Journal of Medicine. 1997; 336:480-486.

Rathore SS, Lenert LA, Weinfurt KP, et al. The effects of patient sex and race on medical

students’ ratings of quality of life. American Journal of Medicine. 2000; 108:561-566.

Schulman KA, Berlin JA, Harless W, et al. The effect of race and sex on physicians’ recommendations for cardiac catheterization. New England Journal of Medicine. 1999; 340:618-626.

Sheifer SE, Escarce JJ, Schulman KA. Race and sex differences in the management of coronary artery disease. American Heart Journal. 2000; 139:848-857.

Steingart RM, Packer M, Hamm P, Coglianese ME, Gersh B, Geltman EM, et al. Sex differences in the management of coronary artery disease. New England Journal of Medicine. 1991;

325:226-230.

Tobin JN, Wassertheil-Smoller S, Wexler JP, Steingart RM, Budner N, Lense L, Wachspress

J. Sex bias in considering coronary bypass surgery. Annals of Internal Medicine. 1987; 107:19-

25.

Udvarhelyi IS, Gatsonis C, Epstein AM, pashos CL, Newhouse JP, McNeil BJ. Acute myocardial infarction in the Medicare population: process of care and clinical outcomes. Journal of the

American Medical Association. 1992; 268:2530-2536.

Wenneker MB, Epstein AM. Racial inequalities in the use of procedures for patients with

ischemic heart disease in Massachusetts. Journal of the American Medical Association. 1989;

261:253-257.

Whittle J, Conigliaro J, Good CB, et al. Racial differences in the use of invasive cardiovascular

procedures in the Department of Veterans Affairs Medical System. New England Journal of

Medicine. 1993; 329:621-627.

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Mr. BILIRAKIS. Thank you very much, Doctor.

Dr. Anne Peterson, Health Commissioner for the Commonwealth

of Virginia. Welcome, Dr. Peterson.

STATEMENT OF ANNE PETERSON, HEALTH COMMISSIONER,

COMMONWEALTH OF VIRGINIA

Ms. PETERSON. Thank you very much, Mr. Chairman and members of the Committee.

I am the State Health Commissioner for Virginia, and perhaps

in bringing a different perspective, some of which the questions

came up earlier today that I hope to be able to address. Virginia

is both recognizing many areas of racial disparities and beginning

to address them in some very significant ways.

We established an office of minority health in 1992, and we are

developing partnerships between the private and public sector to

establish goals to improve the health of all Virginians, with a focus

on eliminating disparities. Dr. Satcher spoke about the Healthy

People 2010. Virginia set eliminate disparities as part of our

Healthy People 2000 goals. So we’ve been looking at that for quite

a while already.

We have a major initiative within that office on access to care.

On June 20, 21 and 23 and have a forum on access to care for minority health this summer. One area, and this is the one I was

asked to discuss today, where minorities have clearly been disproportionately affected, is HIV/AIDS. While African Americans

comprise only 20 percent of Virginia’s population, they account for

almost two-thirds of the reported HIV cases in Virginia, and over

half of the reported AIDS cases. Minority females have been particularly hard hit by this disease. Although African American

women account for only 20 percent of the female population of Virginia, they represent over three quarters of the female HIV cases

in Virginia and almost three quarters of all the female AIDS cases.

While these statistics are alarming, we are making progress. By

careful analysis of the HIV reporting data, Virginia was one of the

first States to recognize that HIV and AIDS were disproportionately affecting the minority community. As a result of that early

recognition of the minority disparity trend, Virginia has initiated

efforts to directly address this disparity, and we are already beginning to see some results. Analysis of Virginia’s surveillance data

does not show that racial or gender disparity for the length of time

between HIV diagnosis and AIDS.

In other words, minority males and females are progressing from

initial HIV diagnosis to sickness at a similar rate as whites. The

number of AIDS deaths for minorities is also decreasing, after

peaking in 1995, AIDS deaths have decreased substantially for

both African Americans and whites. Initially the deaths decreased

more markedly for whites than African Americans. With the addition of the 1999 data, the reduction of deaths among African Americans were comparable to those of whites. This may indicate that

more minorities were able to access appropriate and timely care.

Providing anti-retroviral treatment to pregnant women with HIV

infection has also significantly decreased the transmission of HIV

to their newborns. This is particularly important to minority health

since of the perinatal HIV cases reported in Virginia for 1995 to

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1999, 79 percent of the babies were African American. Since 1995,

when Virginia law required that all physicians encourage pregnant

women in their care to receive HIV testing, and if indicated, treatment, over 90 percent of the HIV infected pregnant women have

been tested. In 1991, 91 percent of the infected mothers were treated with anti-retroviral medication and pre-natal transmission has

decreased from 20 cases in 1992 to 2 so far this year.

In closing, while Virginia has addressed disparities among minorities with HIV and AIDS, we are also focusing on primary prevention and other sexually transmitted diseases. An example is the

syphilis elimination project, which uses a two-pronged approach of

community involvement to assist prevention and education and

train public health staff to identify and treat the disease. The National Centers for Disease Control and Prevention recently conducted a site visit to Danville, Virginia, and plans to use our efforts

as a model for other States to follow.

So I would just say, as you look at research and as we get data

on health disparities and understand the risk factors, we then can,

as this example shows, focus our resources and begin to make a difference in closing the disparity gap.

Thank you for this opportunity.

[The prepared statement of Anne Peterson follows:]

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Mr. BILIRAKIS. Thank you very much, Dr. Peterson.

Dr. John Harley, M.D., Ph.D., is a member and program head of

the Oklahoma Medical Research Foundation out of Oklahoma City.

Welcome, Dr. Harley, and please proceed, sir.

STATEMENT OF JOHN B. HARLEY, OKLAHOMA MEDICAL

RESEARCH FOUNDATION

Mr. HARLEY. Thank you, Mr. Chairman and ranking member,

and committee members.

I have two initiatives that I’ll mention that are going on in my

laboratory. First is the Lupus Multiplex Registry and Repository,

as a national collection of pedigrees with multiple members of

lupus. We facilitate the work of many scientists by providing them

with data and materials from these families. And second, I act as

principal investigator on a study of genetic linkage of lupus in African Americans. We understand this is the only study funded by the

NIH that specifically concentrates on genetic linkage in African

Americans.

The OMRF was chartered in 1946 as a private, non-profit biomedical research institution which employs over 400 scientists,

physicians, technicians and administrative support personnel. The

OMRF focuses on several critical areas of research, cancer, heart

disease, diabetes, Alzheimer’s and Parkinson’s disease, as well as

lupus and other autoimmune diseases. I am pleased to discuss a

subject that’s vital to Oklahoma, the Health Care Fairness Act,

H.R. 3250, because Oklahoma, which means land of the red man

in Choctaw language, is home to 263,000 Native Americans, the

second highest number of Native Americans of any State in the

U.S.

We have instituted a biomedical research center unique to Oklahoma, the Native American Biomedical Research Center. This center will address many of the same issues the Health Care Fairness

Act addresses, including the dramatic disparity in the incidence of

many diseases in our Native American population.

Oklahoma is blessed with the rich and ancient traditions that

spring from our Native American heritage. In fact, we not only

have one of the largest populations of Native Americans in the

country, but also among the most diverse, with over 100 separate

tribal groups represented. Unfortunately, we also have particularly

serious problems from the numerous and severe medical conditions

that affect this population.

For example, it is especially true that the high incidence of autoimmune diseases in Native Americans, these are diseases where

the immune system turns on itself and attacks one’s own body, diseases and disorders thought to have an autoimmune origin include

rheumatoid arthritis, lupus, type 1 diabetes or juvenile diabetes,

multiple sclerosis, scleroderma and others. In some groups of Native Americans, these diseases are especially common.

There is great scientific interest at the present time in the genetics of autoimmune diseases, in spite of the fact that research in

this area is one of the most traditionally underfunded in the U.S.

Oklahoma’s medical investigators have special opportunities to contribute to the solution of these seemingly overwhelming problems

through research and genetics. Indeed, scientists at OMRF have

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done some of the most significant work in the field of

autoimmunity and appreciate the opportunity for discovery and

helping solve the serious problems that these disease pose in selected groups of Native Americans.

In my personal experience in the rheumatic disease clinic in one

of the State’s Indian Health Service hospitals, the spectrum of

autoimmune diseases and their clinical presentations are very different in Native Americans compared to what we know from Americans of European extraction. I am concerned that the very definitions of what the diseases are must be changed to accommodate

how differently they find expression in Native Americans. Accordingly, this also implies that different therapeutic management is

likely to be warranted among the affected Native Americans.

Autoimmune diseases affect different populations in different

ways. In Native Americans, for example, rheumatoid arthritis is

found in as many as 7 percent of some groups, which is more than

five times more frequent than that found in European Americans.

Lupus is another example of high incidence of autoimmune diseases in certain Native American populations.

In the Oklahoma Sioux, lupus appears to have an incidence of

about fivefold greater than that found in European Americans.

Other smaller groups, such as the Apache Tribe, also have a dramatically high incidence.

Working on the genetic problems of Native Americans has a

number of advantages. First, the gene pool is different from that

found in European Americans or in African Americans. There are

also, of course, major differences between Native American groups.

Second, Native Americans offer the opportunity to apply newer genetic approaches using an isolated population strategy or genetic

add mixture. These approaches have a much greater prospect of

success than do the much larger and more expansive studies performed in the out-bred American population.

For example, scleroderma is found at a rate of about 1 in 200 of

the Oklahoma Choctaw, about 50 times the rate found in both nonChoctaw Native Americans in Oklahoma and in European Americans. One of these new genetic approaches was used to identify two

regions of the human genome which contains genes that appear to

dramatically increase the risk of scleroderma in the Oklahoma

Choctaw.

The advances in scientific technology have been revolutionary in

the area of genetics. This technology is being joined with the research excellence of numerous biomedical sciences at the OMRF,

University of Oklahoma Health Sciences Center and other research

facilities in the State to address in a major way the genetics of

autoimmune disease in our Native American populations. Our opportunities, then, are not only to advance medical knowledge, but

also to help provide a solution to these serious, life-long, often debilitating diseases in particularly affected tribal groups.

The Oklahoma Medical Research Foundation proposes to build a

unique genetic unit focusing upon disease processes in Native

Americans with an initial and special emphasis on autoimmune

disorders. We propose to bring together all the necessary ingredients that will result in important progress and contribute to solvVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00112 Fmt 6633 Sfmt 6602 E:\HEARINGS\64770 pfrm08 PsN: 64770
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ing these problems for affected Native Americans in Oklahoma as

well as for all of mankind.

An NIH center for research on minority health would facilitate

funding of OMRF’s Native American Research Center. In addition,

the new NIH center would accelerate studies into dramatic disparities among incidence of many diseases among all of our minority

peoples. Medical breakthroughs and scientific advances that originate from studies focusing on minority populations would likely be

very beneficial to all Americans. OMRF’s mission statement is that

more may live longer, healthier lives. With an NIH center focus on

minority health, we can better do our best to ensure that OMRF’s

goals of longer, healthier lives are achieved for all.

[The prepared statement of John B. Harley follows:]

PREPARED STATEMENT OF JOHN B. HARLEY, PROGRAM HEAD, ARTHRITIS AND

IMMUNOLOGY, OKLAHOMA MEDICAL RESEARCH FOUNDATION

Thank you for the opportunity to speak with the subcommittee. My name is Dr.

John Harley and I am the Head of the Arthritis and Immunology Program at the

Oklahoma Medical Research Foundation (OMRF). Chartered in 1946, OMRF is a

private, non-profit biomedical research institution which employs over 400 scientists, physicians, technicians, and administrative and support personnel. OMRF

focuses on several critical areas of research: Cancer, heart disease, diabetes, Alzheimer’s and Parkinson’s diseases, as well as lupus and other autoimmune diseases.

Today, I am honored to discuss a subject that is vital to Oklahoma, the Health

Care Fairness Act. Because Oklahoma is home to 263,000 Native Americans, the

second highest number of Native Americans in any state in the U.S., we have instituted a biomedical research center unique to Oklahoma—the Native American Biomedical Research Center. This Center will address many of the same issues that

the Health Care Fairness Act addresses, including the dramatic disparity in the

incidences of many diseases in our Native American population.

Oklahoma is blessed with the ancient and rich traditions that spring from our Native American heritage; in fact, our state has one of the largest populations of Native Americans in the country. Unfortunately, we also have particularly serious

problems from the numerous and severe medical conditions that affect this population. This is especially true in the high incidence of autoimmune diseases—where

the immune system ‘‘turns on itself’’ and attacks one’s own body—among the more

than 100 separate tribal groups in Oklahoma. Diseases and disorders thought to

have an autoimmune origin include rheumatoid arthritis, lupus, diabetes (Type 1,

or ‘‘juvenile’’), multiple sclerosis, scleroderma and others. In some groups of Native

Americans, these diseases are especially common.

There is great scientific interest at the present time in the genetics of autoimmune diseases, in spite of the fact that research in this area is one of the most

underfunded in the U.S. Oklahoma’s medical researchers have special opportunities

to contribute to the solution of these seemingly overwhelming problems through research in genetics. Indeed, scientists at OMRF have done some of the most significant work in the field of autoimmunity and appreciate the opportunity for discovery

and for helping solve the serious problems that these diseases pose in selected

groups of Native Americans. Indeed, in my personal experience the spectrum of

autoimmune diseases and their clinical presentations are so different than what is

seen in Americans of European extraction, that I am suspicious that different methods of description and, possibly, therapeutic management may be warranted among

Native Americans.

Autoimmune diseases affect different populations in different ways. In Native

Americans, for example:

• Rheumatoid arthritis is found in as many as 7% of some groups, which is more

than five times more frequent than in European-Americans. Lupus is another

example of the high incidence of autoimmune diseases in certain Native American populations.

• In the Oklahoma Sioux, lupus appears to have an incidence of about five-fold

greater than that found in European-Americans.

Working on the genetic problems in Native Americans has a number of advantages. First, the gene ‘‘pool’’ is different from that found in European-Americans or

African-Americans. There are also, of course, major differences between Native

American groups. Second, Native Americans offer the opportunity to apply newer

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genetic approaches using ‘‘admixture,’’ a method of determining racial mix between

ethnic groups and isolated populations which cannot be applied with the same expectation of success in the ‘‘outbred’’ American population. For example, scleroderma

is found at a rate of about one in 200 among the Oklahoma Choctaw, about 50 times

the rate found in both non-Choctaw Native Americans in Oklahoma and EuropeanAmericans. One of these new genetic approaches was used to identify two regions

of the human genome, which appear to dramatically increase the risk of scleroderma

in the Oklahoma Choctaw.

The advances in scientific technology have been revolutionary in the area of genetics. This technology is being joined with the research excellence of numerous biomedical scientists at OMRF, the University of Oklahoma Health Sciences Center,

and at other research facilities in the state to address in a major way the genetics

of autoimmune disease in our Native American populations. Our opportunities,

then, are not only to advance medical knowledge but also to help provide a solution

to these serious, lifelong, often debilitating and sometimes fatal diseases in particularly affected tribal groups.

The Oklahoma Medical Research Foundation proposes to build a unique genetic

unit focusing upon disease processes in Native Americans, with an initial and special emphasis on autoimmune disorders. We propose to bring together all the necessary ingredients that will result in important progress and contribute to solving

these problems for affected Native Americans in Oklahoma, as well as for all of

mankind.

An NIH Center for Research on Minority Health would facilitate funding of

OMRF’s Native American Research Center. Additionally, the new NIH Center would

accelerate studies into the dramatic disparities among the incident of many diseases

among all our minority peoples.

Medical breakthroughs and scientific advances that originate from studies focusing on minority populations will likely be very beneficial to all Americans. OMRF’s

mission statement is ‘‘. . . that more can live longer, healthier lives.’’ With a NIH center focusing on minority health, we can better do our best to ensure that OMRF’s

goals of longer, healthier lives are achieved for all.

Mr. BILIRAKIS. Thank you, Doctor.

Dr. Elena Rios is President of the National Hispanic Medical Association, located here in Washington, DC. Doctor, please proceed.

STATEMENT OF ELENA RIOS, PRESIDENT, NATIONAL

HISPANIC MEDICAL ASSOCIATION

Ms. RIOS. Thank you, Congressman and guests. I am deeply honored to join you today in support of the Health Care Fairness Act,

H.R. 3250, which has the strong potential to create knowledge and

innovation. Medical and health services research, cultural competence training for health professions and civil rights monitoring,

which I believe will tremendously decrease the disparities that face

all the minorities represented today in the United States.

I’m representing two critical national Washington, DC based organizations, the National Hispanic Medical Association, which represents 30,000 licensed Hispanic physicians in the United States,

and the Hispanic Serving Health Professions Schools, Inc., which

was established in 1996 by the Department of Health and Human

Services in response to the White House’s Educational Excellence

for Hispanic Education Initiative, which represents 20 medical

schools from across the United States, with 9 percent Hispanic student enrollment.

We also work closely with the Hispanic Health Coalition, which

represents 30 national organizations. I’m here today to urge you to

take up the challenge to pass H.R. 3250 and make America

healthier.

During my brief presentation, I just want to focus on three

issues: the current health status of Hispanics, the need for research

and cultural competence in medical services for Hispanics and all

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Americans, and to provide you with our recommendations to improve the bill. In terms of the Hispanic health status, let me just

start by saying that Hispanics really are the largest population in

the United States right now, the current U.S. census estimates of

30 million do not include the 4 million from Puerto Rico or the 3.5

million that the INS estimates as current residents from Hispanic

backgrounds. I know by the year 2050 the projections say that 1

in every 4 Americans will be Hispanic. Indeed, the United States

is soon to become the second largest Spanish speaking country in

the world.

Hispanics are a heterogenous group from 20 countries. There’s a

lot of different cultures to deal with, even among the Hispanics.

The socioeconomic factors, as we know, determine the lifestyle of

people in this country, and Hispanics are one of three, below the

poverty level. The median income of $23,000 versus the $41,000 for

non-Hispanic whites. In 1998, Hispanics continued to have the lowest educational attainment, with Mexican Americans having 50

percent high school dropouts.

In terms of access to health care, Hispanics have very, very poor

socioeconomic status and very poor access to health care. The numbers of uninsured in the United States has increased to 44 million

and are increasing at a faster rate as we heard earlier, due to a

myriad of factors. But Hispanics are the largest group of uninsured

in the United States, 2 out of 5 Hispanics, according to a recent

commonwealth fund, introduced data at our National Hispanic

Medical Association annual conference, and there will be more

work in this area as several different organizations look at strategies to eliminate this disparity in the insurance rates of Hispanics.

Hispanics are also the least likely to be linked to regular sources

of care, as we heard earlier.

What I’d like to just focus on now is the need for medical research. We heard a lot about this earlier, but I think in order to

understand the disease pattern that affects Hispanics, factors that

lead to decreasing barriers for Hispanics to access care, factors that

increase outreach to Hispanics for health promotion programs and

treatment services and physical and mental health and research

programs that can train Hispanic health profession students to become researchers, we critically need to increase biomedical and

health services research that targets all the major population

groups fairly and equitably. This bill should promote support for

research, not only in biomedical institutions, but by community

based agencies and non-profit entities that target all the minority

communities in the country.

There has been minimal Federal support for Hispanics to be included in research, and we urge you to encourage research with

passage of this bill.

In terms of the need for cultural competence curriculum, cultural

competence has been defined as a set of academic and interpersonal skills that allow individuals to increase their understanding and appreciation of cultural differences and similarities

within, among and between groups. This requires a willingness and

an ability to draw on community based values, traditions and customs and to work with knowledgeable persons of and from the comVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00115 Fmt 6633 Sfmt 6602 E:\HEARINGS\64770 pfrm08 PsN: 64770
112

munity in developing focused interventions, communications, and

other supports.

There is an urgent need to adopt legislation like H.R. 3250 that

promotes health professions cultural competence curriculum, given

the growing diversity in the United States population. We believe

that successful strategies for increasing access to health insurance

include cultural competence standards for health professions education, as well as for the whole health system, the facilities, the

standard services, language services, etc.

There is definitely a critical need for cultural competence training for the future health work force of the country, as well as the

current work force to eliminate health disparities, as we heard earlier.

We believe there are important principles that enhance the cultural competence of the physician in the physician patient relationship, including respect for values, respect for health and illness beliefs, respect for family dynamics and decisionmaking, cultural

awareness, assimilation, acculturation levels, role of traditional

healers, role of the pharmacists in our community, Spanish, using

the language Spanish, elimination of biases, awareness of Hispanic

sub-groups, nuances, languages and diet. We believe that more patients from the Hispanic community and other ethnic communities

would access services if they were provided in a culturally competent manner.

In terms of recommendations, for research we just really thought

that the research endowment program is only one program that

could be developed by this bill. Another important aspect is actual

development of consortia among biomedical institutions and partnerships development with community based organizations and

health professional organizations to enhance minority research.

In terms of the centers of excellence for research training, we

just thought it was important to commend the bill for having the

Health Resources and Services Administration centers of excellence

mentioned. But these are separate from the new NIH centers of excellence which wish to be created.

Mr. BILIRAKIS. Doctor, please summarize.

Ms. RIOS. In terms of the cultural competence curriculum, as I

said earlier, we really should understand the importance of the

Hispanic physicians and other physicians from our communities

and being able to share their expertise in developing curriculum for

developing a center for cultural and linguistic competence in health

care that could coordinate all the curriculum mentioned in the bill.

In summary, I’d just like to say that we commend the efforts of

the Committee and we look forward to working with you all in developing more of the bill.

Thank you.

[The prepared statement of Elena Rios follows:]

PREPARED STATEMENT OF ELENA RIOS, DIRECTOR, HISPANIC-SERVING HEALTH

PROFESSIONS SCHOOLS, INC., PRESIDENT, NATIONAL HISPANIC MEDICAL ASSOCIATION

INTRODUCTION

Honorable Congressmen and Congresswomen and guests, I am deeply honored to

join you today in support of the Health Care Fairness Act, H.R. 3250 which has the

strong potential to create knowledge and innovation—medical and health services

research, cultural competence training for health professions, and civil rights moniVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00116 Fmt 6633 Sfmt 6621 E:\HEARINGS\64770 pfrm08 PsN: 64770
113

toring—which I believe will tremendously decrease the disparities in health that

face Hispanics, African Americans, Asian Americans/Pacific Islanders, and Native

Americans in the United States today.

I am representing two critical national Washington DC based organizations: a)

National Hispanic Medical Association, which represents 30,000 licensed Hispanic

physicians in the United States; and b) Hispanic-Serving Health Professions

Schools, Inc., (established in 1996 by the Department of Health and Human Services in response to the White House Educational Excellence for Hispanic Americans

Initiative), which represents 20 medical schools from across the nation with 9% Hispanic student enrollment. The missions of both organizations are to improve the

health of Hispanics. We work closely with the Hispanic Health Coalition, representing 30 national and local organizations, and with minority coalitions to continue to challenge policy-makers to address the economic, social, environmental and

cultural factors responsible for the poor health status and the poor access and utilization of health and mental health services of our communities. I am here today

to urge you to take up the challenge to pass HR 3250 and make America healthier.

During my brief presentation, I will focus on three major issues—1) the current

health status of the Hispanic population in the United States, 2) the need for research and cultural competence in medical services for Hispanics and all Americans,

and 3) to provide you with our recommendations to improve the Health Care Fairness Act, H.R. 3250.

HISPANIC HEALTH STATUS

Population Growth, Poor Health and Access to Care

The Hispanic population has become the largest minority group in the United

States. According to the U.S. Census estimate for 1999, there are 32 million Hispanics or nearly 12% of the population. If you include the Immigration and Naturalization Service estimates of Hispanic residents who lack legal status ( 3.5 million)

and the Puerto Rico Commonwealth population (4 million), the Hispanic population

in 2000 numbers about 40 million. By the year 2050, 1 in every 4 Americans will

be Hispanic. Indeed, the U.S. is soon to become the second largest Spanish speaking

country in the world, second to Mexico.

Hispanics are a heterogeneous group representing more than 20 countries. The

1999 population statistics released by the U.S. Census reported that Hispanic’s

county of origin were 66% Mexico, 14% Central/South America, 10% Puerto Rico, 7%

Caribbean and other countries, and 4% Cuba.

Nearly 87% of all Hispanics live in ten states: California, Texas, New York, Florida, Illinois, New Jersey, Arizona, New Mexico, Colorado, and Nevada. Major Hispanic metropolitan areas include: Los Angeles-Orange-San Bernardino Counties,

California; New York-Northern New Jersey-Long Island-Connecticut, New York;

Miami-Fort Lauderdale, Florida; Chicago-Gary-Lake County, Illinois, Indiana, Wisconsin; San Francisco-Oakland-San Jose, California; Houston-Galveston-Brazbria,

Texas; Dallas-Fort Worth, Texas; and San Antonio, Texas.

The following areas were home to 58% of Hispanics in 1994:

• Los Angeles County—nearly 7 million or 1 in 4 persons

• New York—nearly 3 million

• San Francisco, Miami, Chicago—nearly 1 million

• Houston and Dallas—800,000

• San Antonio—600,000

In 1994, the Census estimated that 39% of Latinos were born outside of U.S. Median Age = 26 years old, 10 years younger than non-Hispanic whites

Socioeconomic factors determine the lifestyle of people in the U.S. One out of

three Hispanics in 1998 were below the Federal poverty level. The 1993 median income was $23,700 for Hispanics vs. $41,100 for non-Hispanic whites. In 1998, Hispanics continued to have the lowest education levels of attainment with 54.7% having attained high school graduation and 10% BA degrees. For Mexican Americans,

50% of those 25 years old and above have 8 years of education or less.

Hispanics and Disease Mortality Rates (age adjusted, in order of frequency):

Heart Disease; Cancer; Unintentional Injuries; Cerebrovascular Disease; Diabete;

sand HIV/AIDS

Immigrant health issues are very important for te Hispanic community, since the

majority of immigrants to the U.S. are from Mexico. There continues to be an emphasis on isues of access to health care services with Spanish language translators

and information and restoring benefits such as food stamps that impact on health.

Spanish language use is a major factor for communicating with Hispanics in the

U.S. 68% are monolingual in Spanish, 86% of Hispanics report Spanish as their first

language, 64% feel more comfortable with Spanish, and 69% report Spanish spoken

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at home. It is no wonder that Spanish media that has loyal viewers, listeners, and

readers, including TV and radio and newspapers have been extremely successful in

the U.S.

To add to the poor socioeconomic status of the Hispanic population, in general,

they do not have adequate access to the health care delivery system. The numbers

of uninsured in the United States has increased to 44 million and are increasing

at a faster rate due to a myriad of factors. Hispanics are the largest group of uninsured in the United States. 2 out of 5 Hispanics are uninsured according to a February 2000 Commonwealth Fund Report, introduced at the National Hispanic Medical Association Annual Conference, the so called ‘‘working poor.’’ The lack of health

insurance coverage varies depending if they are children or adults, if they are poor,

if they work in the service or farming industries, or if they are immigrants or undocumented workers.

Hispanics are least likely to be linked to a regular source of care. Over 30% do

not have a family doctor, or clinic to go when they need care and the Hispanics,

25 years and older, have the least number of dental visits compared to Whites or

Blacks. For children, Hispanics had the highest rates without a physician visit in

the past year and Hispanics had 3 times the rate of Whites and 2 times the rate

of Blacks for no regular source of care. Most non-citizens who have become legal

residents since 1996 are barred from Medicaid for five years, regardless of need.

This situation is more severe among Spanish-speaking populations due to the

shortage of bilingual and bi-cultural physicians and other health and mental health

professionals. The United States medical schools have been able to produce only

about 5% Hispanic physicians and with the demise of affirmative action, we recognize the worsening numbers of underrepresented minority medical students. Furthermore, due to health care providers’ lack of familiarity with the culture and language of patients, and with the limited medical education about cultural competence, Hispanics do not receive the state-of the art treatment that the American

health care system is so proud to provide. With the trend toward managed-care systems of care the access and the quality of medical care has become worse for Hispanics and is expected to become even more disastrous.

Other major factors that need to be addressed to improve access to health care

in this country include:

• Health Care Facilities (hospitals, clinics, private medical offices) • Transportation • Child Care • Language Services Access

Hispanics have one of the worst health status in this country. To begin with, diabetes type 2 is three times higher among Hispanics, compared to non-Hispanics; cervical cancer is the highest among Hispanic women (followed by Vietnamese women);

mortality for breast cancer is one of the highest among Hispanic and African American women due to the fact that minority women do not have access to health care

for early cancer prevention and screening, and they come at a later stage for diagnosis and treatment; prostate cancer is killing our men, and due to the heavy marketing of the tobacco and alcohol industries, lung cancer (due to smoking) and alcoholism are very serious health problems in our community; HIV/AIDS and other

sexually transmitted diseases, combined with tuberculosis, continue to be devastating for the health of our youth and adults. For example, HIV is the third cause

of death among Hispanics, in the U.S., and Puerto Rico has the second highest HIV

rate in the country. Furthermore, Hispanics tend to live in neighborhoods with high

environmental pollution; exposed to violence in the street, in their homes and in

their workplace; and they are most likely to work in occupations where they are exposed to dangerous chemicals (e.g., pesticides) and poor working conditions. This is

particularly true among janitors, landscapers, agricultural workers, etc. I could go

on and on documenting the seriousness of our problems. However, it is important

for policy-makers like yourselves to keep in mind that the health status of Hispanics

vary by age, nationality, gender, socioeconomic status, immigration status and by

levels of acculturation and assimilation to the mainstream society.

Need for Better Medical Research about Hispanics

We know that medical and health services research can lead to information that

will improve the health of our nation.

In order to better understand the disease patterns that affect Hispanics, factors

that lead to decreasing barriers for Hispanics to access to care, and factors that can

increase outreach to Hispanics for health promotion programs and treatment services in physical and mental health, and research programs that can train Hispanic

health professions students to become researchers, we critically need to increase biomedical and health services research that targets all the major population groups

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fairly and equitably. This bill should promote support for research by biomedical institutions, community based agencies, non-profit entities that target all minority

communities in the U.S. There has been minimal Federal support for Hispanics to

be included in medical and health services research, and we urge you to encourage

increased Hispanic research and Hispanics entering research careers with this bill.

One of the most serious problems impacting the health of Hispanics is the lack

of data on their health and medical needs and the lack of biomedical research on

the diseases with the greatest prevalence in this population. Until 1990, we did not

even know how many Hispanics die in this country or the mortality rates of certain

diseases. As a member of the National CDC HIV Strategic Planning Committee and

the Medicare Education Advisory Committee, we find that we can not develop many

measurable objectives for Hispanics because the data is not available. This situation

is more severe at the local level where departments of healths in smaller communities do not have the infrastructures to collect data. Some states, especially in the

South, with recent great influxes of Mexican immigrants have databases that only

recognize Black, White and Other.

Another very important research finding has been the disparities in health, including access, utilization of health services, health status, medical treatment and

disease patterns for minorities.A recent report on the from the Agency for Health

Care Research and Quality found that Hispanics were more likely than whites to

be in fair or poor perceived health status but less likely to be reported as having

functional limitations. Indeed, the DHHS has challenged the U.S. to develop partnerships for outreach and research through its Racial and Ethnic Disparities in

Health Initiative.

A major focus of the Department of Health and Human Services ‘‘Hispanic Agenda for Health’’ and the Health Care Fairness Act is to meet the challenge of little

research on Hispanics. DHHS, through this initiative established the Hispanic-Serving Health Professions Schools, Inc., in response to President Clinton’s Executive

Order 12900, ‘‘Educational Excelence for Hispanic Americans’’ to develop comprehensive, coordinated faculty development Fellowships to increase research on

Hispanic health at member institutions—20 medical schools. In the future, HSHPS

plans to expand to public health schools, nursing schools, dental schools and other

health professional schools. HSHPS has developed collaborative efforts for the first

time among medical schools to develop Hispanic research and Hispanic health researchers. HSHPS also represents all the HRSA Centers of Excellence. We urge

your support that can continue these efforts.

The National Hispanic Medical Association has also encouraged research careers

at our national conference, and has developed a Research Network to identify physicians who are Hispanic researchers and to encourage grant applications to the Federal government. NHMA physicians have a tremendous base of patients who are

Hispanic for research in our community that could prove valuable for efforts to

eliminate disparities in health in our country. We urge you to support the research

efforts of other Hispanic organizations with expertise in working with the Hispanic

community.

Need for Health Professions Cultural Competence Curriculum

Cultural competence has been defined as a set of academic and interpersonal

skills that allow individuals to increase their understanding and appreciation of cultural differences and similarities within, among, and between groups. This requires

a willingness and ability to draw on community-based values, traditions, and customs and to work with knowledgeable persons of and from the community in developing focused interventions, communications and other supports.

There is an urgent need to adopt legislation that promotes health professions cultural competence curriculum, given the growing diversity in the U.S. population and

especially, given the tremendous increase in Hispanics across the nation, and given

the critical levels of uninsured Hispanics.

We believe that successful strategies for increasing access to health insurance

must include cultural competence standards for health professions education as well

as for the health system facilities and services and standards for language services.

There is a critical need for cultural competence training for the future health

workforce and the current workforce to eliminate the health disparities for Hispanics and others with cultural backgrounds, to increase quality care, to decrease

the likelihood of liability/malpractice claims, and to encourage utilization to services.

By supporting this legislation, we can support all these outcomes which will decrease costs and improve the health of the nation.

We find that once Hispanics enter the medical care system, they find that the

health care system in this country is not user friendly, it has no capacity to deal

with populations who have different cultural backgrounds or different illnesses; and

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that classicism, racism and social discrimination impact negatively the quality of

the services provided. On the other hand, the literature shows that, in general, Hispanic physicians provide services to a predominant Hispanic clientele. There is a

growing demand for Hispanic physicians. Why is this?

We believe that there are important principles that enhance the cultural competence of the physician in a physician-patient relationship: respect for values,

health and illness beliefs, respect for family dynamics and decision-making, cultural

awareness, assimilation and acculturation levels and health behaviors, role of traditional healers, role of pharmacists, Spanish use, elimination of biases, awareness of

Hispanic sub-group nuances, language, and diet. We believe that more patients from

the Hispanic community and other ethnic communities would access services if they

were provided in a culturally competent manner.

The NHMA and HSHPS are dedicated to sharing our expertise of Hispanic physicians who have served numerous Hispanic patients and their families with the development of curriculum for future generations of health professionals. We all benefit by this bill that provides support for the collection of this unique knowledge and

the development of formal training programs in medical schools, nursing schools,

public health schools, dental schools, mental health professional training programs,

etc.

There has been an acceptance of cultural competence over the past decade by the

Federal government, state governments, undergraduate and graduate medical education, nursing education and mental health education focused on service delivery

and curriculum development for health professions and health staff in public clinics.

The following are important milestones:

• 1992—State of California Cultural Competency Task Force for Medicaid • 1995—U.S. Department of Health and Human Services Office on Women’s Health

and Office of Minority Health National Conference on Cultural Competence and

Women’s Health Medical Education Curricula; Curricula Collection Distributed • 1996—DHHS Hispanic Agenda for Action establishes a Cultural Competence

Workgroup • to stimulate activities across the Department • 1997—Substance Abuse and Mental Health Services Administration develops Cultural Competence Principles for Mental Health and Substance Abuse Treatment • 1998—Council on Graduate Medical Education Minority Workforce Report • 1998—DHHS OWH and OMH Review of the United States Medical Licensing Examination for Cultural Competence • 1998—Health Care Financing Administration Regulations on Cultural Competence for all Medicaid and Medicare contractors published • 1999—Liaison Committee on Medical Education Standard on Cultural Competence Approved (accreditation for all medical schools) • 2000—Accreditation Council for Graduate Medical Education Standard for Cultural Competence in process (accreditation for residency programs)

• 2000—OMH publishes Recommendations for Standards for Culturally and Linguistically Appropriate Health Services for Public Comment

In addition, over the past decade, private sector organizations including HMOs,

pharmaceutical companies, hospitals, and national health professions organizations

have sponsored conferences and training programs for staff in order to develop cultural competence for more effective medical delivery for Hispanic and other ethnic

groups in their target areas.

Centers of Excellence—statement about their importance to Hispanic health

HSHPS same type of statement—need for coordinating programs under this legislation

NHMA—cultural competence projects

Recommendations to Improve HR 3250

1. Research—The $100 million appropriation for minority research should be distributed to research efforts focused on all four of the major minority groups—Hispanic, African American Asian American and Pacific Islander and Native American.

There should be a fair and equitable distribution plan.

The research endowment program is only one program mentioned in the bill. The

Hispanic-Serving Health Professions Schools, Inc. conducts the HSHPS Research

Fellowship Program to develop faculty for its 20 member medical schools. Some research funding in this bill could be used to develop faculty through fellowships, who

would become leaders in the health arena for Hispanic research.

Another important aspect for minority research is consortium development among

biomedical institutions and partnership development with community based agencies and health professional associations to enhance minority research. In the case

of Hispanics, we could better understand regional and sub-group variations related

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to disease pathophysiology, medical treatment issues if the HSHPS organization, for

example, could develop consortiums and partnerships with the 20 medical schools

in our membership that have a demonstrated commitment to Hispanic health.

Lastly, research skills development and training for medical students and residents is needed to encourage them to consider research careers. The bill could support these efforts through grants to organizations other than biomedical institutions

such as the National Hispanic Medical Association and other Hispanic organizations

that provide training programs to younger students interested in health careers.

2. Centers of Excellence for Research Training—The Health Resources and

Services Administration funds Black, Hispanic, Native American and All Minority

Centers of Excellence that are granted to health professions schools that have the

track record and commitment to recruiting minority students and faculty and developing curriculum and research that focuses on minority populations. The Centers

of Excellence have created several innovative accomplishments to enhance diversity

training and research for better health system. We applaud the vision behind HR

3250 for challenging the National Institutes of Health to develop a similar program

that can only be as successful. We hope that you would support this bill to continue

to develop Centers of Excellence programs that encourage research on minority populations.

3. Medical Education and Health Professions Curriculum—The eligibility

for awards to develop innovative curriculum should not be limited to health professions schools. Residency programs, community based organizations, the health professions associations such as the National Hispanic Medical Association should be

allowed to compete for NIH funds and to provide their expertise to the advancement

of cultural competence. Indeed the NHMA and the Association of American Indian

Physicians wrote a grant to develop cultural competence training of physicians in

Orange County, California about heart disease risk factors to the CDC REACH Program. We see our role as sharing expertise in dealing with our communities because

we know that there is such a disastrous shortage of minority physicians and other

health professionals in the country.

4. National Cultural Competence Conference—The national conference by

the Office of Minority Health on cultural competence curriculum should not be limited to continuing medical education courses, but should include undergraduate and

graduate medical education as well as the other health professions curriculum that

are innovative. The Department of Health and Human Services convened a major

national conference that brought together the major players in the medical education (licensing, accreditation, medical schools, residency programs, foundations,

state government and Federal government) who were encouraged to build innovative curriculum in cultural competence. This leadership needs to be continued at all

levels of health professions education. Faculty who teach future providers for the

health system need to be educated about successful curricula and to be encouraged

by Federal leadership. Hispanic physicians and other minority health providers

need to be encouraged to share their vast knowledge base, the ‘‘art of medicine’’ that

has not been part of the Western medicine institutionalized information sources—

publications, curriculum, mainstream medical specialty and academic conferences.

This knowledge is needed especially for the future health providers who will face

increasing challenges of diversity in their patients.

5. Coordination and Dissemination of Cultural Competence Curriculum—

Although we agree that the dissemination function would best be served by the

OMH Resource Center, we strongly urge you to support that the coordination function be under the responsibility of the OMH Center for Cultural and Linguistic

Competence in Health Care (CCLCHC). The CCLCHC was established by the Office

of Minority Health in 1995, upon Congressional mandate. The mission of this

CCLCHC is to promote the removal of health care service barriers and increase access to health care for limited English-speaking (LEP), racially and ethnically diverse populations. The CCLCHC should be the focal point for the cultural competence efforts outlined in this legislation and we urge funding for it.

6. Office of Civil Rights—Recently, the U.S. Commission on Civil Rights focused

attention on Federal health care programs and called for the enhancement of the

Office of Civil Rights in order to decrease disparities in health for minorities in the

health system. We support the efforts in the bill to expand the efforts of the OCR.

CONCLUSION

We have mutual goals with everyone in this room— to increase access to health

care services for the most vulnerable and to simultaneously decrease health care

costs to our society. After all, creating legislation is an exercise for the public good.

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I would argue if we don’t pass this legislation, we are asking for greater health

care costs to Americans. One cost is the major decrease in individual productivity

and a decreased productive workforce. Another cost we would face is drastically reduced public health of all sectors of the population. After all, take a look around

at any restaurant, hotel, airport, office buildings, hospitals—the workers are from

many countries from around the world with different cultural backgrounds. If they

cannot understand our health system because they are not provided appropriate information, or are not comfortable or respected by our physicians and health providers, why would they attempt to obtain medical treatment for TB, Hepatitis, AIDS

or debilitating conditions like hypertension, heart disease, asthma, diabetes, cancer,etc.?

HR 3250 is an opportunity to develop strategies to increase knowledge that will

improve the quality of life for all minorities in the United States.

We applaud Secretary Donna Shalala and the Department of Health and Human

Services under the Clinton administration for laying the foundation for addressing

Hispanic health care research and cultural competence through the ‘‘Hispanic Agenda for Action.’’ Much more needs to be done by the Department to meet the needs

of the growing Hispanic population.

We commend the Chairman of the Subcommittee on Health and Environment,

Congressman Bilirakus, and the efforts of Congressman Thompson and the supporters of HR3250 to provide yet another great opportunity for research and cultural competence on Hispanics, African Americans, Asian Americans/Pacific Islanders, and Native Americans to advance knowledge about disease unique to each

group, to increase researchers from each group and to develop quality health services with cultural competence training of providers.

The health of all Americans will be enhanced by this bill. We strongly urge all

of you to vote for passage of the bill into law.

References

National Center for Health Statistics. Health, United States, 1999, Hyattsville, MD, 1999.

U.S. Census Bureau Population Estimates Program, Population Division, Washington,

DC.(Internet Release Date April 11, 2000)

U.S. Department of Commerce, Economics and Statistics Association, Bureau of the Census.

We the American Hispanics, 1993.

The Commonwealth Fund. Hispanics and Insurance. February 2000.

U.S. Department of Health and Human Services and Grantmakers in Health. Call to Action:

Eliminating Racial and Ethnic Disparities in Health Conference Proceedings. September 1998.

U.S. Department of Health and Human Services. Hispanic Agenda for Action. September

1996.

Rios, E. and Simpson, C. Summary of National Conference. Cultural Competence and Women’s Health in Medical Education. JAMWA. Vol 53, No. 3, Supplement 1998.

Komaromy, et all. The Role of Black and Hispanic Physicians in Providing Health Care for

Underserved Populations. NEJM. Vol 334. No. 20, Mar 16, 1996.

U.S. Department of Health and Human Services. Public Health Service. Agency for Health

Care Policy and Research. Health Status and Limitations: A Comparison of Hispanics, Blacks,

and Whites, 1996. AHCPR Pub. No. 00-0001, October 1999.

U.S. Commission on Civil Rights. The Health Care Challenges: Acknowledging Disparity, Confronting Discrimination, and Ensuring Equality. September 1999.

Mr. BILIRAKIS. Thank you, Doctor.

Mr. Ignatius Bau, Director of Health Policy, Asian Pacific-Islander American Health Forum, located out of San Francisco, California. Welcome, Mr. Bau. Please proceed, sir.

STATEMENT OF IGNATIUS BAU, DIRECTOR, HEALTH POLICY,

ASIAN PACIFIC-ISLANDER AMERICAN HEALTH FORUM

Mr. BAU. Thank you and good afternoon. Thank you for the opportunity to testify here in support of H.R. 3250. I want to underscore the remarks made by Congressman Underwood earlier this

morning, which highlighted many of the points that I’m going to

make and which I will not repeat.

We are a national organization that focuses on improving the

health of Asian Americans and Pacific Islanders. We work with

health providers, community health centers and community based

organizations in the diverse Asian American and Pacific-Islander

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communities on both health care as well as health promotion and

health prevention programs.

We, as Congressman Underwood said this morning, are a very

diverse community. We’re not a single community, but many, many

communities, coming from over 50 countries and speaking over 100

different languages and dialects. As a diverse community, we have

very diverse health needs and diverse health statuses. The heterogeneity in our community is reflected in the fact that on the one

hand we have stereotypes and images of very successful Asian

American doctors and business people.

But on the other hand, we know that southeast Asian women

have the highest rates of cervical cancer among all Americans and

at the same time have the lowest rates of screening for both breast

and cervical cancer. We know that Native Hawaiians consistently

suffer much, much worse health than their counterparts in the

State of Hawaii. We know that hepatitis B and tuberculosis hit

Asian Americans and Pacific-Islanders harder than any other racial

and ethnic group. And we know that although one quarter of Asian

Americans and Pacific-Islanders in the aggregate are uninsured,

over 40 percent of Korean Americans are uninsured mainly because

they’re in small business and unable to afford health insurance on

their own.

Therefore, we wholeheartedly support this bill, H.R. 3250, including the elevation of the Office of Research on Minority Health to

a national center on research for minority health and health disparities. Our organization and others have worked with the Office

of Research on Minority Health and we know as much as they have

done with us and in our community, they need the grant making

and the direct authority in order to make sure that the research

that we need in our communities to document these health disparities and more importantly, to document interventions that will be

effective in addressing these health disparities, are in fact funded

and placed in the community where they belong.

We also applaud and very much want to focus on the bill’s efforts

to collect more complete race and ethnicity data when it comes to

health status. This is one of the top priorities for Asian Americans

and Pacific-Islanders. Without this data, it’s difficult to talk about

the diversity of our communities and the diversity of health status

in our communities. Because when we’re asked, how do you design

your program, we need to know which languages and cultures to

tailor those programs so that they can reach communities that are

most effective. Therefore we very much support the efforts that

have been made in the bill and would urge even more efforts to

clarify and to even mandate more complete race and ethnicity data

regarding health.

Like others on this panel, we support the bill’s support for training curricula, particularly for cultural competency, and we also

support, along with Dr. Satcher’s highlighting it, the media campaign for the Office of Civil Rights. We think that it’s very important that the office continue to be supported in its efforts to ensure

that the health of all Americans are protected by our civil rights

laws.

So in summary, this is long overdue legislation that would go a

long way to address many of the health disparities in the Asian

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American and Pacific-Islander, as well as the other minority communities in this country, which will go a long way to advancing the

health of all Americans.

Thank you.

[The prepared statement of Ignatius Bau follows:]

PREPARED STATEMENT OF IGNATIUS BAU, POLICY DIRECTOR, ASIAN AND PACIFIC

ISLANDER AMERICAN HEALTH FORUM

Thank you for the opportunity to testify this morning in support of H.R. 3250.

The Asian and Pacific Islander American Health Forum is a national advocacy organization dedicated to promoting policy, program, and research efforts to improve the

health and well-being of Asian Americans and Pacific Islanders. Since our inception

in 1986, we have worked together with other communities of color to improve the

health status of all Americans. In recent years, we have redoubled our collaborative

efforts to find common solutions to the difficult challenges in health facing our communities and the nation as a whole.

Before I comment on the Health Care Fairness Act, I would like to provide a brief

overview of our Asian American and Pacific Islander communities. We include many

diverse peoples, originating from Palau to Pakistan, from American Samoa to Singapore, from Hong Kong to Hawaii. We come from over fifty countries and speak over

a hundred different languages and dialects. We are composed of fifth generation

Americans, recent immigrants and refugees, and indigenous peoples of the Pacific.

According to the U.S. Census Bureau, we are the fastest growing racial/ethnic population in the U.S., expected to increase nearly 40% from 1990 to this year’s census.

We also are an incredibly heterogeneous population. As a group, Asian Americans

and Pacific Islanders have the highest percentage of college graduates but we also

have the highest percentage of those who have less than five years of education.

• Behind the images of immigrant success stories, there are indigenous Pacific Islanders and Southeast Asian refugees that continue to face long-term poverty

• Behind the images of dot-com South Asian American millionaires, there are Thai

Americans who work long hours under extreme conditions in garment factory

sweatshops

• Behind the images of successful Chinese American doctors, there are Korean

American grocery store owners who cannot afford any health care

This great heterogeneity also applies in our health status. For example,

• Native Hawaiian men and women have some of the highest rates of lung cancer

incidence and death among all Americans

• Southeast Asian women have highest rates of cervical cancer among all Americans but at the same time have the lowest rates of breast and cervical cancer

screening

• Asian Americans and Pacific Islanders have the highest rates of tuberculosis and

Hepatitis B among all Americans

• Nearly one quarter of Asian American and Pacific Islanders do not have health

insurance

Our organization was established by Asian American and Pacific Islander providers and advocates who came together to address these and other health disparities among Asian American and Pacific Islander populations. We believe that the

elimination of health disparities and the improvement of the health of all Americans

has to be a united effort. Therefore, we enthusiastically support the Health Care

Fairness Act (H.R. 3250).

Specifically, we support the elevation of the Office of Research on Minority Health

at the National Institutes of Health (NIH) to a National Center for Research on Minority Health and Health Disparities. We believe that the NIH needs a strong and

effective coordinating body to comprehensively plan and implement a health disparities research agenda at the NIH. Moreover, as a member of a population with diverse cultures and languages, we applaud the emphasis on research on the cultural

and linguistic aspects of outreach, prevention, and treatment.

We applaud the bill’s focus on collecting more complete race and ethnic information regarding health status. This is one of the top priorities for our Asian American

and Pacific Islander communities. For too long, the challenges facing many segments of our Asian American and Pacific Islander communities have been ignored

because there is no national or local data to document our needs. Moreover, most

of the available data do not fully represent the experiences of the diversity in the

Asian American and Pacific Islander communities. Without more complete data collection, many Asian American and Pacific Islander communities will not have the

121

tools to highlight and address the challenges that we face in eliminating health disparities.

We also support the bill’s support for training curricula and continuing medical

education programs to reduce disparities in health care outcomes, including development of curricula for cultural competency in graduate medical education. It is vital

that our current and future health care providers are well-equipped to serve all

Americans.

Finally, we strongly support the bill’s national media campaign, including the use

of ethnic media, to inform the public of the programs and activities of Office of Civil

Rights at the Department of Health and Human Services. The Office of Civil Rights

already has been working constructively with providers and health care institutions

to ensure the civil rights of all Americans in health care settings and its efforts

would be enhanced with such additional community awareness and outreach.

This is long overdue legislation that will go a long way in ensuring equal access,

quality and outcomes in health care for all Americans. We applaud the co-sponsors

of this legislation for coming together to address these challenges collectively. We

pledge our cooperation in working with this Committee to secure passage of this bill.

Thank you.

Mr. BILIRAKIS. Thank you very much, Mr. Bau.

The Chair recognizes Dr. Coburn to start the questioning.

Mr. COBURN. Thank you, Mr. Chairman.

I just want to touch on one thing with Dr. Rios. Did I hear you

say that, maybe it was an implication, that the Federal Government ought to be setting the curricula for the cultural competency?

I understand what the bill says, but what did you say?

Ms. RIOS. No, we are supportive of the way the bill is written

that the Government should encourage cultural competency curricula, that there is a need for mainstream society to learn more

about how to deal with our cultures. What I mentioned was the

definition of cultural competency.

Mr. COBURN. I just wanted to clarify that it’s not your testimony

that the Government ought to be establishing it. The health care

professionals who are minorities and know those cultural characteristics ought to be the ones.

Ms. RIOS. Yes. I think the community organizations and the

schools need to develop the curricula.

Mr. COBURN. Dr. Peterson, I want to ask you some questions,

and I’m very interested in your testimony on HIV. Is it your

thought that the disparity is now declining in Virginia because you

have a program of HIV and AIDS notification, partner notification

and reporting?

Ms. PETERSON. I think it makes a difference. Virginia was one

of the first States to have named HIV reporting, so that in the

packet of data that you have, if you look at pages 9 and 10 and

compare them, you can see that in 1990, we could recognize there

was a trend to a racial disparity in the HIV population. We

couldn’t see that in our AIDS data until, actually it was 1990, for

HIV and 1993-94 for AIDS.

That meant that as we used our Ryan White dollars, we could

begin to focus resources in our minority population years earlier

than other States. So having the data, knowing for all of your different sub-populations, and I would agree with many others on the

panel that we need to have that data, did allow us to focus. It has

not taken care of all of the disparity in the HIV-AIDS situation.

But I think what we try and tease out is access to care, the kinds

of things that system wide we can address. It looks like we’re doing

pretty well because we’ve been able to focus early.

122

Mr. COBURN. So basically Virginia is refocusing their dollars

where the disease is and in Virginia it happens to be moving into

minority populations. But wherever it moved, that you would be

able to focus the dollars that way.

Ms. PETERSON. Right. And working in collaboration with consortiums and local groups who then, in that close partnership, can

deal with cultural competency as well.

But yes, we have, and one of the maps shows the AIDS cases in

the graph for hot spots. We have our resources focused there.

Mr. COBURN. And you do have partner notification law in Virginia?

Ms. PETERSON. Yes.

Mr. COBURN. Did you recall hearing the testimony of Dr. Satcher

that he believes, and it’s the CDC’s position, the name based reporting and partner notification?

Ms. PETERSON. Yes, and I would agree completely. On partner

notification, that is how we do all of our sexually transmitted disease. It makes sense for communicable disease control. We’ve been

doing it for a very long time with our HIV name reporting. And we

have had no objections to it. We safeguard confidentiality very,

very carefully.

Mr. COBURN. Has there ever been a break in confidentiality?

Ms. PETERSON. No, there has not been.

Mr. COBURN. When you report to the CDC on HIV-infected, and

somebody contracts it heterosexually, do you report that as a heterosexual transmission?

Ms. PETERSON. We do. Virginia has a slightly different reporting

scheme than CDC.

Mr. COBURN. Then let me ask you the question, when the data

is received by CDC how do they classify it?

Ms. PETERSON. They probably put it in their other.

Mr. COBURN. Other meaning no identifiable risk?

Ms. PETERSON. Right.

Mr. COBURN. Does that make sense to you as a commissioner of

public health?

Ms. PETERSON. What we are trying to do, and made a decision

a number of years ago, is to identify for each person what is the

mode that they contracted the disease, and therefore, if it’s heterosexual transmission, since it’s now in the heterosexual population,

we wanted to be able to track that.

So we do it a little differently. We know that this is a debate that

they are going back to see whether they don’t want to go the same

direction as Virginia.

Mr. COBURN. Dr. Friedell, a couple questions. We had a little private discussion when I was introduced to you an hour or so ago in

terms of human papilloma virus. The House passed yesterday a bill

which requires the CDC to now track and develop tools and educational information for the American public on human papilloma

virus. I know as you related to me the significant increase you’re

seeing in cervical cancer in the community that you serve.

One of the things that concerns me, as you talked about cervical

cancer and prostate cancer and these other things, is the reports

that are out there now that there is a positive correlation between

HPV exposure and prostate cancer. When we see the prostate canVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00126 Fmt 6633 Sfmt 6602 E:\HEARINGS\64770 pfrm08 PsN: 64770
123

cer, what it is in this country, and we see a sexually transmitted

disease that now has a correlation with it, what’s your experience

now in how we handle HPV in terms of a communicable disease

and what we should be doing? Do you have any comments for this

Committee in regard to that?

Mr. FRIEDELL. I don’t really have any experience as far as prostate cancer and HPV, but I have a fair amount of experience with

the idea of human papilloma virus infection when it comes to cancer of the cervix. Cancer of the cervix is at a higher rate in the Appalachian population of Eastern Kentucky. In fact, our own data

show that recently, I’m also the director of the State cancer registry, that the incidence of invasive cervical cancer in Eastern Kentucky and Appalachian Kentucky, our rural poor population, is exactly the same as in our African American population.

In terms of HPV and its function, I don’t know that we have any

reporting mechanism for definition of HPV itself. Until we get a

more reliable test, I think in a longer range, most people believe

that recognizing human papilloma virus of certain strains, I think

it’s 16, 18, 31 particularly, that perhaps developing a vaccine is the

most effective way to deal with that particular problem as part of

the cervical cancer problem.

Mr. BILIRAKIS. I know this is a subject that Dr. Coburn is very

knowledgeable in and wants to continue on. But our trouble is, we

have probably an hour’s worth of votes starting now. I really don’t

want to make you good people wait until we return.

So possibly if we can maybe hustle right on through.

Mr. Brown.

Mr. BROWN. Thank you.

Mr. Bau, tell me a little bit about tuberculosis, why it’s more

common among Asian Americans, what nationalities especially

does it hit, just the poor who are here, and is there much multidrug resistant TB among Asian Americans that have contracted it?

Mr. BAU. From what I know, a lot of the tuberculosis is from

folks who are coming from other countries where tuberculosis is

much more prevalent. So even though we do immigration screening

for that, a lot of that, and Dr. Peterson could probably speak to it

as well, it means that we then need both culturally appropriate as

well as linguistically appropriate programs to follow up to make

sure people continue to stay on their medications.

And also the conditions where tuberculosis continues to spread,

where there’s overcrowding, where there’s not good ventilation.

When you’ve got new immigrant populations coming in, housing

situations in which those kinds of situations do exist, then that

also leads to the spread, even again to the best efforts.

So again, a lot of it is targeting the efforts. I think Dr. Peterson

could also speak to the fact that our funding for tuberculosis control was at a really good level and then it fell dramatically several

years ago. So again, part of the resurgence that we see is directly

correlated to the amount of funding that goes into those programs.

Mr. BROWN. Dr. Peterson, comment if you would, and also, are

we doing directly observed treatment well in Virginia?

Ms. PETERSON. We are doing directly observed treatment for

cases that are infectious. The resource funding issue is a limiting

factor for skin test positive, but non-infectious cases, and doing diVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00127 Fmt 6633 Sfmt 6602 E:\HEARINGS\64770 pfrm08 PsN: 64770
124

rectly observed therapy. I would reiterate that in Virginia, our

cases are foreign borne at this point. One of our measures of success is finding them, treating them early and making sure that we

don’t have any cases that are transmission within the U.S. Virginia

has been very successful with that. It’s getting harder to do.

Mr. BROWN. Thank you, Mr. Chairman.

Mr. BILIRAKIS. Dr. Cohen, your organization, AAMC, has traditionally opposed set-aside programs for research that is not reviewable by research management. We’ve had a policy here in the Congress, of not directing NIH on how they should spend those research dollars, even though we sometimes are unhappy about some

of the decisions they make, and we let them know that. But we still

hesitate to direct that.

Yet this legislation, as you know, allocates funds directly to the

proposed center. Comment quickly?

Mr. COHEN. Well, I think the decision we came to was that the

urgency of this matter was such that we were willing to forego that

traditional objection to bypass budgets, which we continue to have

a strong policy against. But we feel that the balance here has shifted because of the urgency of this issue.

Mr. BILIRAKIS. The urgency, then. I see.

Well, I have so much more, but the Chair is going to recognize

Mr. Whitfield.

Mr. WHITFIELD. Mr. Chairman, thank you, and I understand

you’re going to relieve this panel.

Mr. BILIRAKIS. Yes, we’re going to finish up.

Mr. WHITFIELD. I would first of all ask unanimous consent that

Dr. Friedell be able to admit into the record an article from the

Lexington Herald relating to incidence of cancer within the State

of Kentucky.

Mr. BILIRAKIS. Without objection. And to add to that, there is a

package here which has been cleared through the Minority National Alliance of State Territorial AIDS Directors, the data and

testimony of Thomas Liberti, Chief, Bureau of HIV-AIDS in Florida. I would ask unanimous consent that that be made a part of

the record. It has been cleared.

Mr. WHITFIELD. Mr. Chairman, I’m just going to make one statement. I read Dr. Friedell’s testimony, and I think everyone on this

panel would agree that we are very much concerned about the programs for research and health, prevention of disease in minorities.

I think it’s also important, and Dr. Friedell pointed this out very

well, that we be concerned about all underserved populations,

whatever their ethnicity might be.

There are, as a matter of fact, more poor white people underserved in the country than there are blacks, Hispanics, Native

Americans put together. And this bill focuses entirely on minorities, which is important. But I think we also, as we move forward

in this legislation, must focus on the medically underserved as

well.

Mr. BILIRAKIS. Mr. Strickland.

Mr. STRICKLAND. I just want to make one quick statement. We

only have a couple of minutes left. But I’m going to echo my colleague’s comments. I believe we need to focus on minority health.

125

I believe the statistics are alarming and unacceptable that you

have talked about.

I also believe, talking to Dr. Friedell and others, that correlation

is not necessarily causation, and race and ethnicity may not be the

primary causative factor. It may be medically underserved populations and poverty related conditions. So I hope this bill is not so

limited that it leaves out a whole mass of citizens who rightfully

should be considered as being underserved.

Mr. BILIRAKIS. I appreciate that, Mr. Strickland.

Very quickly, and I don’t know how much time we have, we don’t

have very much, but if the elevation of the office to center is a potential stumbling block because of the fact that dollars bypass the

director, etc., and unless we get the administration’s approval, I

don’t know really how much hope there will be.

So I would ask you about the other provisions of this bill, Title

II, Title III, Title IV, and Title V. Do you feel there’s a lot to be

gained by those titles and can be gained from a constructive basis,

whether or not at this time the office is elevated to center?

[All witnesses respond in the affirmative.]

Mr. BILIRAKIS. You all do, then. Thank you.

Well, ladies and gentlemen, we really appreciate it. We apologize

for your waiting so long. Some of you have had this experience before and know what it’s like up here.

Also, we do ask that you be willing to answer any written requests to you. You’ve been an awful lot of help. Thank you so

much. The hearing is adjourned.

[Whereupon, at 3:07 p.m., the subcommittee was adjourned.]

[Additional material submitted for the record follows:]

COORDINATION OF MINORITY HEALTH ACTIVITIES WITHIN THE DEPARTMENT OF

HEALTH AND HUMAN SERVICES

The Department of Health and Human Services (DHHS) utilizes both formal and

informal strategies to accomplish the coordination of minority health activities in a

timely, efficient, and effective manner.

In 1998, the Secretary established an infrastructure to institutionalize the White

House minority initiatives within each operating division of the Department. This

included the initiatives for: Historically Black Colleges and Universities (HBCU),

the Hispanic Agenda for Action (HAA), the White House Initiative on Tribal Colleges and Universities, and the Asian American and Pacific Islander Action Agenda.

This formal structure was also established to improve coordination of issues and activities that crossed all four initiatives.

To fulfill the above goals, a Departmental Minority Initiatives Steering Committee

was established to provide direction and guidance for the initiatives. This Committee is composed of the Heads or Deputies of the DHHS Operating Divisions; the

Assistant Secretaries for Management and Budget, Planning and Evaluation, and

Health/Surgeon General; and senior staff members from the Executive Secretariat,

Office for Civil Rights, Office of the General Counsel, and the Office of Intergovernmental Affairs. The Deputy Secretary chairs the Committee, and the Deputy Assistant Secretary for Minority Health serves as its Executive Director. This Committee

meets on a quarterly basis.

Supporting this Steering Committee is the Departmental Minority Initiatives Coordinating Committee (DMICC) which acts as the coordinating body and meets

monthly. The Department’s Office of Minority Health (OMH) is responsible for providing staff support to both the DMICC and the Steering Committee, and plays a

lead role in the ongoing management of all minority initiatives. The body of this

committee is made up of senior level staff members who are responsible for the

management of minority health activities within the DHHS Operating Divisions. In

addition, on an as needed basis, subcommittees or work groups are created to better

address issues that intersect the four initiatives, and allows for additional input

from the targeted racial/ethnic groups.

126

The Operating Divisions also coordinate activities among themselves in instances

where a Department-wide plan is not involved. Again, these coordination activities

may occur informally or through more formal means such as an interagency agreement for cofunding a program or project. OMH has also established cooperative

agreements with minority organizations, which allows offices and agencies to collaborate in the conduct of mutually inclusive initiatives for improving the health

status and quality of life for racial/ethnic populations. In addition, the Operating Divisions often utilize the DMICC meeting as an avenue for sharing information regarding minority health activities within their respective agencies.

All of these formal and informal procedures have been instituted to ensure that

greater coordination exists throughout DHHS. These activities also ensure that

those individuals within each agency with the appropriate knowledge and experience are involved in developing, coordinating, and reporting on the Department’s efforts to address the health needs of minority communities.

DHHS MINORITY HEALTH DIRECTORS AND ADMINISTRATORS

Agency Location Of Minority Health Activities Contact Person Telephone

Number

DHHS/OS .. Office of Minority Health, Office of

Public Health and Science

Nathan Stinson Ph.D., M.D., M.P.H.,

Deputy Assistant Secretary for Minority Health

301-443-5084

FDA .......... Office of Consumer Affairs Mary Wallace,

Director of Consumer Programs

301-827-4406

NIH ........... Office of Research on Minority Health,

Office of the Director

John Ruffin, Ph.D.,

Director

301-402-1366

IHS ........... External Affairs, Office of the Director Leo Nolan, Senior Policy Analyst

(contact is usually issue specific)

301-443-7261

ATSDR ...... Office of Urban Affairs Vincent Nathan, Ph.D., M.P.H.,

Minority Health Program Manager

404-639-5064

AHRQ ........ Center for Cost and Financing Studies Morgan Jackson, M.D.,

Minority Health Program Director

301-594-0147

HRSA ........ Office of Minority Health, Office of the

Administrator

M. June Horner,

Director

301-443-2964

AoA ........... Office of the Assistant Secretary Sunday Mezurashi, Special Assistant

to the Assistant Secretary

202-401-4541

HCFA ........ Beneficiary Services Group,

Center for Beneficial Services

Kevin Nash, Program Executive for

Minority Health Initiatives

41O-786-5781

CDC .......... Office of Minority Health,

Office of the Director

Wilma Johnson, MSPH,

Acting Associate Director

404-639-7210

SAMHSA ... Office of Minority Health,

Office of the Administrator

Deloris Hunter, Ph.D.,

Director

301-443-7265

ACADEMIC HEALTH CENTERS

May 10, 2000

The Honorable MICHAEL BILIRAKIS

Subcommittee on Health and Environment

Committee on Commerce

2125 Rayburn House Office Building

United States House of Representatives

Washington, D.C. 20515

DEAR MR. CHAIRMAN: The Association of Academic Health Centers is writing to

express out support for H.R. 2391 and H.R. 3250, bills that would elevate the Office

of Research on Minority Health at the National Institutes of Health to a National

Center.

Health status disparities in the United States among minority, disadvantaged,

and underserved communities continue to persist, even though improvements have

been made in the general population.

By elevating the existing NIH office to a center, research on health disparities will

be a higher priority, and the community will be empowered to take responsibility

to achieve the national goal of improving the health status of all Americans. As you

know, the goal of Healthy People 2010 is to eliminate disparities in health.

AAHC requests that you make this letter a part of the record for your subcommittee’s May 11th hearing on health status disparities.

127

Thank you for the opportunity to present our views.

Sincerely,

ROGER J. BULGER, MD

President

PREPARED STATEMENT OF LORETTA DAVIS-SATTERLA, DIRECTOR, DIVISION OF HIV/

AIDS-STD, MICHIGAN DEPARTMENT OF COMMUNITY HEALTH

AIDS case reporting has been the cornerstone of national efforts to monitor the

spread and impact of the HIV/AIDS epidemic. In the past, monitoring AIDS-defining

conditions provided population-based data that reflected changes in the incidence of

HIV infection. However, recent advances in HIV treatment have slowed the progression of HIV disease and has contributed to a decline in AIDS incidence. Thus, AIDS

case reporting provides information on an epidemic which is a decade or more old.

Advances in treatment have diminished the ability of AIDS surveillance data to represent trends in the incidence of HIV infection and as a consequence, the capacity

of local, state, and federal public health agencies to monitor the HIV epidemic has

been compromised.

Surveillance activities are a key element of a comprehensive public health response to this epidemic. Surveillance data assists public health in monitoring the

epidemic including the number of people infected, the number of newly acquired infections and the modes of transmission. In addition, the data is used to target and

evaluate prevention and care efforts, and in the allocation of resources.

In Michigan, confidential HIV reporting has been required by statute since 1989.

Confidential HIV reporting has greatly enhanced Michigan’s ability to rapidly and

effectively respond to the dynamics of this epidemic. It is estimated that there are

currently 13,000 individuals residing in Michigan who are infected with HIV. The

HIV/AIDS Reporting System (HARS) reveals that there are 4,433 currently living

with AIDS and an additional 4,830 individuals living with HIV and not AIDS. In

contrast to AIDS case surveillance, HIV case surveillance provides data to better

characterize populations in which HIV infection has been newly diagnosed, including persons with evidence of recent HIV infection. Compared with persons living

with AIDS, those reported living with HIV infection in Michigan are more likely to

be women (18% for AIDS vs 26% for HIV) and African Americans (55% for AIDS

and 62% for HIV). Approximately, 1% of AIDS cases occurred in both persons aged

13-19 years and 20-24 years. In comparison, 4% of HIV cases occurred in persons

aged 13-19 years and 13% of HIV cases occurred in persons 2024 years. Thus, AIDS

case surveillance alone does not accurately reflect the extent of the HIV epidemic

among African Americans, women, adolescents and young adults.

Having knowledge about those more recently infected with HIV, with respect to

risk as well as sociocultural characteristics, is exceedingly important in targeting

prevention efforts. HIV case data facilitate identification of trends in the epidemic.

As a direct result of having HIV case data available for planning efforts, current

prevention efforts supported by the Michigan Department of Community Health emphasize racial/ethnic minorities, women and at-risk youth. Having a snap-shot of an

emerging epidemic has also facilitated development of prevention interventions

which are responsive to community needs, as well as being culturally and linguistically competent. HIV case data, combined with other types of data, has guided allocation of prevention resources to address priority needs and communities. Confidential HIV case data have also been critical in planning and evaluating continuum of care efforts.

Michigan is fortunate to have a statewide client-level data collection system (the

Uniform Reporting System or URS) which documents the service utilization patterns of persons living with HIV/AIDS (PLWH/A) who access service programs funded through the Ryan White CARE Act. The URS data, when used in conjunction

with HIV/AIDS surveillance data, allow us to evaluate whether the HIV/AIDS Continuum of Care system is reaching the population known to be living with the disease. Because client descriptive information is linked to service data, the URS allows us to review how intensively different subsets of the population are utilizing

different components of the care system, and it can also be used to identify gaps

in service to specific groups or in specific areas.

The URS and HIV/AIDS Reporting System (HARS) case report data are compared

at least annually to ascertain whether the population receiving services is consistent

demographically with the cases reported in each region and the state, and to verify

whether minority and historically underserved populations have been served in proportion to their representation in the community of persons living with HIV infection and/or AIDS. Over the last several years this comparison has revealed that cliVerDate 11-MAY-2000 08:24 Nov 10, 2000 Jkt 010199 PO 00000 Frm 00131 Fmt 6633 Sfmt 6621 E:\HEARINGS\64770 pfrm08 PsN: 64770
128

ents served by RWCA-funded agencies were representative of the HIV epidemic in

Michigan.

As the proportions of women and African Americans have increased in the epidemic, they have also increased in URS data, indicating a growing need for services

among these populations. For example, the percent of African Americans served

went from 56.6% of the total in 1995 to 63% of the total served in 1999, and the

number served increased by 35% (3,066 to 4,143). The proportion of Hispanic clients

served has also increased slightly, going from 3.1% (1995) to 3.6% of the total served

(1999), with the number served increasing by 43% (166 to 238). The number of

women (of all races) served in 1999 was 40.6% more than the number reported in

1995 (1,176 to 1,653). Females made up 26% of the total served during 1999 while

they were only 21.7% of the total served during 1995.

The fact that URS data and HARS data report similar demographic proportions

for the known infected population and the population reported to be ‘‘in care’’ indicates that the continuum of care system in Michigan has been successful at reaching

and serving people who are representative of the epidemic in the state. Without client-level data and HIV case reporting this type of evaluation would not be possible.

African Americans and women of all races have been described as ‘‘traditionally

under served populations’’ and this designation has considerable basis in fact, especially for those who are also living with HIV disease. Effectively treating HIV and

all its physical symptoms is difficult, but when exacerbating co-morbidities or socioeconomic conditions (such as poverty, homelessness, or lack of insurance) are also

present, the range of available treatment options becomes significantly more limited

and the challenge of providing quality care is compounded exponentially. Simply

put, co-morbidities and other co-factors increase the complexity and the cost of care

for persons living with HIV. A significant proportion of PLWH/A, effected by one or

more of these co-morbidities or socioeconomic factors, are African Americans and

women.

The URS data over the past five years have documented that poverty, lack of

health insurance, the presence of mental health and/or substance abuse problems,

and homelessness/inadequate housing are factors which effect a higher proportion

of African Americans living with HIV and women living with HIV than the general

HIV/AIDS affected population who use Ryan White funded services.

Poverty is the co-factor which effects the largest percentage of persons living with

HIV. Poverty creates significant barriers to care because it effects every aspect of

life, beginning with lack of health insurance, and transportation to medical care,

and extending to poor nutrition, inadequate housing and generally poor health practices due to lack of resources.

Substance abuse, and/or mental illness also have a serious impact on the complexity of care for people with HIV. Substance abuse or mental health issues are

difficult to treat individually and often have a negative impact on an individual’s

health since either co-morbitity can effect a person’s ability to adhere to treatment

and remain in care. In addition, substance abusers or the mentally ill often have

unstable living conditions, which makes follow-up difficult.

When seeking to address these issues, with the goal of achieving 100% access and

0% disparity, it is essential that systems are utilized that allow identification of

emerging trends relative to race/ethnicity, gender and behavioral risk factors. Planning based on trends in HIV infection provides a more accurate assessment of the

distribution of the infected population, the number of individuals in need of access

to treatment, and the type of medical and support services required to meet client

needs. In Michigan, HIV case reporting and the Uniform Reporting System have

been effective tools in addressing the current epidemic by facilitating planning of

appropriate prevention, early intervention and care services. Michigan has documented that the combined prevalence of those living with a diagnosis of HIV infection and those living with AIDS provides a more realistic and useful estimate of the

resources needed for prevention and care services than does AIDS prevalence alone.

129

NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

May 11, 2000

The Honorable THOMAS BLILEY

Chairman

House Commerce Committee

U.S. House of Representatives

Washington, DC 20515

The Honorable MICHAEL BILIRAKIS

Chairman

Health and Environment Subcommittee

U.S. House of Representatives

Washington, DC 20515

DEAR CHAIRMAN BLILEY AND CHAIRMAN BILIRAKIS: On behalf of the National Alliance of State and Territorial Directors, I am requesting submission for the record

HIV/AIDS surveillance information that illustrates disparities among racial/ethnic

minorities in terms of HIV/AIDS in the U.S. The attached tables provide data on

the percentage comparison of individuals living with AIDS, and the percentage of

individuals diagnosed with HIV (not AIDS) based on race and sex for the 25 States

that had initiated HIV reporting before 1995.

Confidential HIV reporting enhances the ability of public health programs to rapidly and effectively respond to the dynamics of the HIV/AIDS epidemic. HIV case

surveillance provides data to better characterize and deliver services to populations

in which HIV infection has been newly diagnosed, including persons with evidence

of recent HIV infection. The data compiled in these tables generally indicate that

compared with persons living with AIDS, those reported living with HIV infection

are more likely to be people of color and women. The data suggest that AIDS case

surveillance alone does not accurately reflect the extent of the HIV epidemic among

African Americans, Hispanics and women in the United States.

Having knowledge about those more recently infected with HIV in terms of risk

factors and socio-cultural characteristics is important in targeting prevention and

treatment programs. Planning based on trends in HIV infection provides a more accurate assessment of the distribution of infected populations, the number of individuals in need of access to treatment, and the type of medical and support services

required to meet client needs through programs such as those funded by the Ryan

White CARE Act.

Thank you for the opportunity to submit this information for the committee consideration.

Sincerely,

JULIE M. SCOFIELD

Executive Director

Alabama Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 37.6% White ...................................................................... 35.2%

Black ....................................................................... 60.9% Black ...................................................................... 62.2%

Hispanic .................................................................. 1.2% Hispanic ................................................................. 0.8%

Asian ....................................................................... 0.2% Asian ...................................................................... 0.1%

Indian ...................................................................... 0.1% Indian .................................................................... 0.1%

Unknown ................................................................. 0.0% Unknown ................................................................ 1.5%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 81.4% Male ....................................................................... 74.2%

Female .................................................................... 18.6% Female ................................................................... 25.8%

Arkansas Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 61.4% White ...................................................................... 53.0%

Black ....................................................................... 36.2% Black ...................................................................... 43.7%

Hispanic .................................................................. 1.4% Hispanic ................................................................. 0.9%

Asian ....................................................................... 0.1% Asian ...................................................................... 0.1%

130

Arkansas Profile—Continued

AIDS Prevalence by Race HIV Prevalence by Race

Indian ...................................................................... 0.5% Indian .................................................................... 0.2%

Unknown ................................................................. 0.3% Unknown ................................................................ 2.2%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 82.5% Male ....................................................................... 75.2%

Female .................................................................... 17.5% Female ................................................................... 24.8%

Arizona Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 69.5% White ...................................................................... 66.1%

Black ....................................................................... 8.0% Black ...................................................................... 10.5%

Hispanic .................................................................. 19.5% Hispanic ................................................................. 16.4%

Asian ....................................................................... 0.7% Asian ...................................................................... 0.5%

Indian ...................................................................... 2.2% Indian .................................................................... 2.9%

Unknown ................................................................. 0.1% Unknown ................................................................ 3.5%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 89.8% Male ....................................................................... 86.2%

Female .................................................................... 10.2% Female ................................................................... 13.8%

Colorado Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 70.5% White ...................................................................... 71.2%

Black ....................................................................... 13.2% Black ...................................................................... 13.4%

Hispanic .................................................................. 15.3% Hispanic ................................................................. 12.1%

Asian ....................................................................... 0.4% Asian ...................................................................... 0.4%

Indian ...................................................................... 0.6% Indian .................................................................... 0.7%

Unknown ................................................................. 0.0% Unknown ................................................................ 2.2%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 91.5% Male ....................................................................... 91.3%

Female .................................................................... 8.5% Female ................................................................... 8.7%

Idaho Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 83.6% White ...................................................................... 85.1%

Black ....................................................................... 2.6% Black ...................................................................... 5.5%

Hispanic .................................................................. 11.8% Hispanic ................................................................. 8.4%

Asian ....................................................................... 1.0% Asian ...................................................................... 0.0%

Indian ...................................................................... 1.0% Indian .................................................................... 0.7%

Unknown ................................................................. 0.0% Unknown ................................................................ 0.4%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 85.2% Male ....................................................................... 83.6%

Female .................................................................... 14.8% Female ................................................................... 16.4%

131

Indiana Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 69.3% White ...................................................................... 60.7%

Black ....................................................................... 26.5% Black ...................................................................... 35.2%

Hispanic .................................................................. 3.9% Hispanic ................................................................. 3.6%

Asian ....................................................................... 0.1% Asian ...................................................................... 0.3%

Indian ...................................................................... 0.2% Indian .................................................................... 0.1%

Unknown ................................................................. 0.0% Unknown ................................................................ 0.1%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 88.2% Male ....................................................................... 82.4%

Female .................................................................... 11.8% Female ................................................................... 17.6%

Louisiana Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 40.4% White ...................................................................... 29.2%

Black ....................................................................... 56.3% Black ...................................................................... 67.7%

Hispanic .................................................................. 2.8% Hispanic ................................................................. 2.4%

Asian ....................................................................... 0.2% Asian ...................................................................... 0.2%

Indian ...................................................................... 0.1% Indian .................................................................... 0.1%

Unknown ................................................................. 0.2% Unknown ................................................................ 0.3%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 81.4% Male ....................................................................... 68.3%

Female .................................................................... 18.6% Female ................................................................... 31.7%

Michigan Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 41.3% White ...................................................................... 33.6%

Black ....................................................................... 55.0% Black ...................................................................... 61.3%

Hispanic .................................................................. 3.4% Hispanic ................................................................. 3.0%

Asian ....................................................................... 0.3% Asian ...................................................................... 0.1%

Indian ...................................................................... 0.1% Indian .................................................................... 0.6%

Unknown ................................................................. 0.0% Unknown ................................................................ 1.4%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 81.9% Male ....................................................................... 74.6%

Female .................................................................... 18.1% Female ................................................................... 25.4%

Minnesota Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 66.8% White ...................................................................... 61.0%

Black ....................................................................... 23.8% Black ...................................................................... 28.7%

Hispanic .................................................................. 6.5% Hispanic ................................................................. 6.3%

Asian ....................................................................... 0.8% Asian ...................................................................... 0.9%

Indian ...................................................................... 2.1% Indian .................................................................... 2.2%

Unknown ................................................................. 0.0% Unknown ................................................................ 0.9%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 86.5% Male ....................................................................... 82.8%

Female .................................................................... 13.5% Female ................................................................... 17.2%

132

Missouri Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 60.9% White ...................................................................... 53.1%

Black ....................................................................... 35.4% Black ...................................................................... 43.0%

Hispanic .................................................................. 3.1% Hispanic ................................................................. 2.6%

Asian ....................................................................... 0.3% Asian ...................................................................... 0.4%

Indian ...................................................................... 0.4% Indian .................................................................... 0.2%

Unknown ................................................................. 0.1% Unknown ................................................................ 0.7%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 88.9% Male ....................................................................... 84.4%

Female .................................................................... 11.1% Female ................................................................... 15.6%

Mississippi Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 31.6% White ...................................................................... 23.7%

Black ....................................................................... 66.8% Black ...................................................................... 73.7%

Hispanic .................................................................. 1.2% Hispanic ................................................................. 1.1%

Asian ....................................................................... 0.1% Asian ...................................................................... 0.2%

Indian ...................................................................... 0.2% Indian .................................................................... 0.1%

Unknown ................................................................. 0.2% Unknown ................................................................ 1.1%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 75.7% Male ....................................................................... 68.4%

Female .................................................................... 24.3% Female ................................................................... 31.6%

North Carolina Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 28.8% White ...................................................................... 22.3%

Black ....................................................................... 67.1% Black ...................................................................... 74.8%

Hispanic .................................................................. 2.9% Hispanic ................................................................. 1.0%

Asian ....................................................................... 0.2% Asian ...................................................................... 0.3%

Indian ...................................................................... 0.7% Indian .................................................................... 0.9%

Unknown ................................................................. 0.3% Unknown ................................................................ 0.7%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 77.6% Male ....................................................................... 65.0%

Female .................................................................... 22.4% Female ................................................................... 35.0%

North Dakota Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 73.2% White ...................................................................... 81.7%

Black ....................................................................... 7.3% Black ...................................................................... 6.7%

Hispanic .................................................................. 4.9% Hispanic ................................................................. 3.3%

Asian ....................................................................... 2.4% Asian ...................................................................... 0.0%

Indian ...................................................................... 12.2% Indian .................................................................... 6.7%

Unknown ................................................................. 0.0% Unknown ................................................................ 1.7%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 87.8% Male ....................................................................... 81.7%

Female .................................................................... 12.2% Female ................................................................... 18.3%

133

New Jersey Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 25.8% White ...................................................................... 19.1%

Black ....................................................................... 54.2% Black ...................................................................... 58.3%

Hispanic .................................................................. 19.2% Hispanic ................................................................. 20.4%

Asian ....................................................................... 0.4% Asian ...................................................................... 0.5%

Indian ...................................................................... 0.1% Indian .................................................................... 0.1%

Unknown ................................................................. 0.3% Unknown ................................................................ 1.6%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 68.5% Male ....................................................................... 59.8%

Female .................................................................... 31.5% Female ................................................................... 40.2%

Nevada Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 63.3% White ...................................................................... 64.0%

Black ....................................................................... 20.8% Black ...................................................................... 22.7%

Hispanic .................................................................. 13.8% Hispanic ................................................................. 11.3%

Asian ....................................................................... 1.3% Asian ...................................................................... 1.0%

Indian ...................................................................... 0.8% Indian .................................................................... 0.8%

Unknown ................................................................. 0.0% Unknown ................................................................ 0.2%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 86.9% Male ....................................................................... 81.7%

Female .................................................................... 13.1% Female ................................................................... 18.3%

Ohio Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 56.6% White ...................................................................... 43.2%

Black ....................................................................... 38.2% Black ...................................................................... 46.3%

Hispanic .................................................................. 4.7% Hispanic ................................................................. 4.2%

Asian ....................................................................... 0.3% Asian ...................................................................... 0.2%

Indian ...................................................................... 0.1% Indian .................................................................... 0.2%

Unknown ................................................................. 0.0% Unknown ................................................................ 5.9%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 85.8% Male ....................................................................... 77.4%

Female .................................................................... 14.2% Female ................................................................... 22.6%

Oklahoma Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 69.7% White ...................................................................... 65.7%

Black ....................................................................... 17.8% Black ...................................................................... 23.7%

Hispanic .................................................................. 4.6% Hispanic ................................................................. 3.8%

Asian ....................................................................... 0.7% Asian ...................................................................... 0.4%

Indian ...................................................................... 7.0% Indian .................................................................... 5.8%

Unknown ................................................................. 0.2% Unknown ................................................................ 0.6%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 88.2% Male ....................................................................... 84.1%

Female .................................................................... 11.8% Female ................................................................... 15.9%

134

South Carolina Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 28.6% White ...................................................................... 25.6%

Black ....................................................................... 69.9% Black ...................................................................... 73.0%

Hispanic .................................................................. 1.3% Hispanic ................................................................. 1.0%

Asian ....................................................................... 0.1% Asian ...................................................................... 0.2%

Indian ...................................................................... 0.1% Indian .................................................................... 0.1%

Unknown ................................................................. 0.0% Unknown ................................................................ 0.3%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 75.4% Male ....................................................................... 68.7%

Female .................................................................... 24.6% Female ................................................................... 31.3%

South Dakota Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 82.5% White ...................................................................... 79.5%

Black ....................................................................... 4.8% Black ...................................................................... 8.1%

Hispanic .................................................................. 3.2% Hispanic ................................................................. 3.7%

Asian ....................................................................... 0.0% Asian ...................................................................... 0.0%

Indian ...................................................................... 9.5% Indian .................................................................... 8.7%

Unknown ................................................................. 0.0% Unknown ................................................................ 0.0%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 85.7% Male ....................................................................... 82.0%

Female .................................................................... 14.3% Female ................................................................... 18.0%

Tennessee Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 49.8% White ...................................................................... 39.1%

Black ....................................................................... 48.3% Black ...................................................................... 59.6%

Hispanic .................................................................. 1.5% Hispanic ................................................................. 1.1%

Asian ....................................................................... 0.2% Asian ...................................................................... 0.2%

Indian ...................................................................... 0.1% Indian .................................................................... 0.0%

Unknown ................................................................. 0.0% Unknown ................................................................ 0.0%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 83.6% Male ....................................................................... 72.6%

Female .................................................................... 16.4% Female ................................................................... 27.4%

Utah Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 79.6% White ...................................................................... 77.3%

Black ....................................................................... 6.6% Black ...................................................................... 9.1%

Hispanic .................................................................. 11.7% Hispanic ................................................................. 11.2%

Asian ....................................................................... 0.8% Asian ...................................................................... 0.3%

Indian ...................................................................... 1.3% Indian .................................................................... 1.8%

Unknown ................................................................. 0.0% Unknown ................................................................ 0.4%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 91.4% Male ....................................................................... 85.6%

Female .................................................................... 8.6% Female ................................................................... 14.4%

135

Virginia Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 38.1% White ...................................................................... 29.6%

Black ....................................................................... 57.3% Black ...................................................................... 65.8%

Hispanic .................................................................. 3.8% Hispanic ................................................................. 3.0%

Asian ....................................................................... 0.6% Asian ...................................................................... 0.5%

Indian ...................................................................... 0.1% Indian .................................................................... 0.1%

Unknown ................................................................. 0.1% Unknown ................................................................ 0.9%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 80.7% Male ....................................................................... 72.4%

Female .................................................................... 19.3% Female ................................................................... 27.6%

Wisconsin Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 54.8% White ...................................................................... 48.3%

Black ....................................................................... 34.4% Black ...................................................................... 41.9%

Hispanic .................................................................. 9.4% Hispanic ................................................................. 7.7%

Asian ....................................................................... 0.4% Asian ...................................................................... 0.8%

Indian ...................................................................... 0.8% Indian .................................................................... 1.1%

Unknown ................................................................. 0.1% Unknown ................................................................ 0.3%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 86.8% Male ....................................................................... 79.4%

Female .................................................................... 13.2% Female ................................................................... 20.6%

West Virginia Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 79.3% White ...................................................................... 58.4%

Black ....................................................................... 19.3% Black ...................................................................... 37.2%

Hispanic .................................................................. 1.1% Hispanic ................................................................. 2.3%

Asian ....................................................................... 0.0% Asian ...................................................................... 0.4%

Indian ...................................................................... 0.0% Indian .................................................................... 0.2%

Unknown ................................................................. 0.2% Unknown ................................................................ 1.5%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 86.0% Male ....................................................................... 71.3%

Female .................................................................... 14.0% Female ................................................................... 28.7%

Wyoming Profile

AIDS Prevalence by Race HIV Prevalence by Race

White ....................................................................... 88.9% White ...................................................................... 76.3%

Black ....................................................................... 4.8% Black ...................................................................... 6.8%

Hispanic .................................................................. 6.3% Hispanic ................................................................. 13.6%

Asian ....................................................................... 0.0% Asian ...................................................................... 1.7%

Indian ...................................................................... 0.0% Indian .................................................................... 1.7%

Unknown ................................................................. 0.0% Unknown ................................................................ 0.0%

AIDS Prevalence by Sex HIV Prevalence by Sex

Male ........................................................................ 92.1% Male ....................................................................... 79.7%

Female .................................................................... 7.9% Female ................................................................... 20.3%

AIDS prevalence as of 12/1998; prevalence of diagnosed HIV (not AIDS) as of 12/1998.

136

Source: Centers for Disease Control and Prevention (CDC)

NATIONAL ASSOCIATION OF COMMUNITY HEALTH CENTERS, INC.

May 11, 2000

The Honorable MIKE BILIRAKIS, Chair

The Honorable SHERROD BROWN, Ranking Member

Subcommittee on Health and Environment

House Commerce Committee

2125 Rayburn House Office Building

Washington, DC 20515

DEAR CHAIRMAN BILIRAKIS, RANKING MEMBER BROWN, AND MEMBERS OF THE SUBCOMMITTEE: Thank you for providing an opportunity for us to submit a statement

on behalf of the National Association of Community Health Centers regarding H.R.

3250, the ‘‘Health Care Fairness Act of 1999.’’ We appreciate your consideration of

our views.

We strongly support the goal of this legislation: to reduce and eventually eliminate the health disparities that currently exist between white Americans and those

who are members of a racial or ethnic minority. For more than thirty years, community, migrant and homeless health centers have been working toward that goal. The

goal of the national health center program is to provide, ‘‘100% Access’’ to health

care with ‘‘Zero health disparities.’’

Health centers provide high quality primary care to people of all ages, from all

cultures, and with all incomes. Health centers are the health care home for nearly

4.5 million children 7 million people of color, over 600,000 farmworkers, and more

than a half-million homeless men, women, and children each year—11 million patients in all, 4.5 million of whom are uninsured.

We take pride in the successes we have had thus far in developing and implementing service delivery models that are notable for helping to reduce some of the

gaps that exist in health outcomes for minorities today. Some of our accomplishments include: dramatic reductions in infant mortality rates; successful management of diabetes, hypertension, and asthma that afflicts many of our patients from

racial and ethnic minority groups; childhood immunization rates that shame the industry standard; and increased usage of prenatal care and preventive health strategies by health center patients.

However, we claim only to have been consistent warriors in this battle, with some

successful fighting techniques to share. Our nation is far away from winning the

war against health disparities. Therefore, we applaud the Subcommittee for its bold

vision and its willingness to take a stand on these issues by convening today’s hearing on H.R. 3250.

Without question, more research in this field needs to be done. We applaud the

sponsors of this legislation for proposing the creation of the National Center for Research on Minority Health and Health Disparities. We believe such a Center is long

overdue. However, NACHC strongly urges the Committee to clearly convey its intent to appropriators that funding for this Center should, to the extent possible, be

dedicated out of the existing budget for the National institutes of Health so as not

to undermine funding for other important programs funded under the Labor, Health

and Human Services, and Education Appropriations bill.

There are several important sections in the legislation that provide for the support and conduct of research and demonstration programs to test and evaluate

strategies for eliminating health disparities and for promoting effective interventions. We believe health centers are well situated to be given priority consideration

as demonstration test sites for the research models funded under this bill.

We also support adding a new requirement to the bill that would call for the collection of data and information on best practice models of service delivery where disparities in health outcomes are currently being addressed, such as at federally

qualified health centers.

We appreciate the inclusion of health centers among the provider groups named

as eligible entities to receive incentives under a new program that would encourage

health care professionals to participate in continuing medical education programs

designed to decrease disparities in minority health.

And finally, we would encourage changes to the legislation that would include

participation from health center experts on the new advisory committee to the Secretary of Health and Human Services, as well as in the development of and participation in the national conference on continuing medical education on cultural competency that is mandated under the bill. Health center clinicians and directors have

years of valuable, field-tested experience in providing culturally competent care.

137

Failure to include their expertise in these endeavors would be an unfortunate oversight.

In sum, the National Association of Community Health Centers would encourage

the Subcommittee to move forward with favorable consideration of this legislation,

including any of the suggested changes we have outlined in this statement. We believe H.R. 3250 is a good bill and deserves to become law.

This Congress has an opportunity to right many of the wrongs that exist in today’s healthcare system. Taking action to reduce and eliminate racial disparities in

health outcomes is a good step in the right direction.

Again, thank you for this opportunity to share our thoughts with you.

Sincerely,

CAROLYN EMANUEL-MCCLAIN

Chair, National Board of Directors, NACHC

Executive Director, Family Health Centers, Inc. NACHC

Orangeburg, South Carolina

TOM VAN COVERDEN

President and CEO, NACHC

NATIONAL MEDICAL ASSOCIATION

WASHINGTON, D.C.

May 11, 1999

The Honorable MICHAEL BILIRAKIS

Chairman,

House Committee on Commerce,

Subcommittee on Health and the Environment

2125 Rayburn House Office Building

Washington, D.C. 20515

DEAR MR. CHAIRMAN: The National Medical Association (NMA) is very pleased to

support H.R. 2391 and H.R. 3250, bills which would elevate the Office of Research

on Minority Health (ORMH) at the National Institutes of Health (NIH) to a National Center.

In spite of the fact that the nation has experienced tremendous advances in biomedical research, the benefits of these advances have not fully translated into better

health status or health care for African Americans and other racial and ethnic minorities. Communities of color continue to be unduly plagued with disproportionate

rates of death and disease. As the changing demographics of the nation yield an increasingly diverse U.S. population, it is absolutely essential that the nation become

increasingly proactive in addressing the critical health and biomedical research

needs of communities of color.

By elevating the existing NIH office to a center, research on health disparities will

be a higher priority, and communities of color will be empowered to take responsibility to achieve the national goal of closing the health disparity gap.

In reference to today’s hearing on H.R. 3250, the NMA supports the critical provisions of this critical legislation, which include:

• The establishment of the Center for Research on Minority Health and Health Disparities at the National Institutes of Health (NIH);

• The provision of funds to support programs of excellence in biomedical research

and for peer-reviewed minority health-focused research grants;

• The requirement to establish a comprehensive plan and budget for the conduct

and support of all minority research activities of the NIH agencies; and

• The establishment of a grant program to support the development of culturally

competent curricula in health care education.

The NMA strongly supports both legislative measures and believes that they will

create important opportunities for the nation to make concrete advances in it’s effort

to close the health disparity gap. NMA would appreciate it if you would include this

letter in the record for your subcommittee’s May 11th hearing on H.R. 3250, the

Health Care Fairness Act. We look forward to working with you to ensure passage

and enactment of this important bill.

Sincerely,

JAVETTE ORGAIN, M.D.

President

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RESEARCH!AMERICA

May 10, 2000

The Honorable MICHAEL BILIRAKIS

Subcommittee on Health and Environment

Committee on Commerce

2125 Rayburn House Office Building

United States House of Representatives

Washington, D.C. 20515

DEAR MR. CHAIRMAN: Research!America is writing to stress the importance of consideration of H.R. 2391 and H.R. 3250, bills which would elevate the Office of Research on Minority Health (ORME) at the National Institutes of Health (NIH) to

a National Center.

Health status disparities in the United States among minority, disadvantaged,

and under served communities continue to persist, even though improvements have

been made in the general population. According to our polls, the top health concerns

of American citizens are the very diseases which disproportionately affect minority

and under served populations such as cancer and AIDS.

It is time this nation makes research on health disparities a higher priority so

the community will be empowered to achieve the goal of improving the health status

of all Americans.

Research!America would appreciate it if you would make this letter a part of the

record for your subcommittee’s May 11 hearing on health disparities.

Thank you for the opportunity to present our views.

Sincerely,

PAUL G. ROGERS

PREPARED STATEMENT OF GLORIA M. RODRIGUEZ, ASSISTANT COMMISSIONER, NEW

JERSEY DEPARTMENT OF HEALTH AND SENIOR SERVICES, DIVISION OF AIDS PREVENTION AND CONTROL

I welcome the opportunity to comment on H.R. 3250, the Health Care Fairness

Act of 1999. It has long been an ‘‘accepted’’ fact that many diseases disproportionately affect minorities. I use the term ‘‘accepted’’ purposefully, as it reflects society’s

lack of concern at the results of these disparities. Therefore, I commend the Committee for recognizing the importance of this issue and holding a hearing on this

legislation.

The establishment of a National Center for Research on Minority Health and

Health Disparities may assist in the coordination of minority health research and

the delivery of health services in a culturally appropriate manner. A vital aspect of

this bill is the comprehensive review and study of all data collection and reporting

systems and practices relating to the collection of data on race or ethnicity. It is imperative in examining the effects of race and ethnicity on health care access and

outcomes to collect information on subgroups within specific minority populations.

When targeting prevention as well as treatment efforts, different methods and approaches may be needed to address the distinct needs of certain subpopulations. I

can best describe this through example.

In New Jersey, we have had a very successful HIV surveillance system in place

since 1992. Prior to November 1991, only persons diagnosed with full-blown AIDS

were reported to the State Health Department. As you know, an AIDS diagnosis

and the concomitant damage to an individual’s immune system may reflect an infection that occurred 10 to 15 years earlier. AIDS is truly the end stage of what we

refer to as HIV disease. Since we began collecting information on persons diagnosed

with HIV infection, we have been able to obtain data on persons more recently infected with HIV. We have been looking at the ‘‘front end’’ of the epidemic for over

eight years. This has enabled us, in collaboration with the New Jersey HIV Prevention Community Planning Group, to better prioritize and target our prevention efforts throughout the State. We have been able to fund programs that may not have

received prevention funds without the kind of data analysis conducted on HIV disease. We have found that among teens and young adults, aged 1324, more than onehalf of the persons living with HIV disease are females—the only age group where

females outnumber males. Additionally, 84% of this population are Hispanic or African American. If we were just looking at AIDS case data, we would not be aware

of this fact, and would only see that 61% of all people ever diagnosed with AIDS

in that age group were males. The HIV information has shown us that teenage girls

and young women, especially those who are African American or Hispanic, are being

infected and living with HIV in larger numbers than males. This is a significant

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change from the first decade of the epidemic, and is critical information for targeting our prevention efforts to young people.

HIV surveillance has also given us the opportunity to determine the implementation and effectiveness of public health service recommendations for preventing

perinatal HIV transmission, opportunistic infections, and AIDS defining illnesses.

The HIV disease data can also be used to assess potential short-term and long-term

adverse outcomes related to perinatal exposure to antiretroviral agents. These effects include birth defects, toxic reactions, and tumor development. When we know

a great deal of information about people living with HIV infection, we can allocate

prevention, counseling, treatment and other resources where the need is greatest.

This information has also enabled us to determine that the decline in deaths among

those with HIV/AIDS has not been uniform across all racial and ethnic groups. For

example, there has been a 73% decline in deaths among AIDS patients in New Jersey between 1995 and 1999. However, the decline among whites was 83%, among

Hispanics was 72%, and among African Americans was 68%.

Even with this HIV/AIDS surveillance system, which is a model program nationally, our efforts would be greatly enhanced if we could include more information on

minority subgroups. When an epidemic affects minorities as disproportionately as

the HIV epidemic has done, it is too easy to simply say we need to have certain

programs for Hispanics and certain programs for African Americans, and leave it

at that level. If we want to make a significant impact, we need to target subgroups

that may differ on critical characteristics or cultural norms. If we could look at more

specific subpopulation data, we would be better able to determine and evaluate prevention efforts within specific communities. We would also have more information

regarding treatment/support system needs within subgroups. Using methods and

approaches that are appropriate to different subgroup populations will recognize the

cultural differences that exist in the larger community.

Because of the data systems in place in most hospitals and provider offices, we

are limited to the general category of Hispanic if we want to look at data specifically

for Latinos. Institutionalized data collection systems need to systematically collect

information on minority subpopulations. Federal standards for the uniform collection of race and ethnic information must lead the way for the reporting of this data.

Currently, we can only obtain this level of detail by directly interviewing patients

or clients. Since it would be impossible for us to conduct interviews with all persons

reported with HIV infection, we are limited in our ability to obtain this data except

for certain special studies.

I would like to reiterate our support for this legislation and the establishment of

a National Center for Research on Minority Health and Health Disparities. I also

urge as a priority the examination of all collection and reporting systems relating

to data on race and ethnicity. Our efforts, as we enter the third decade of our battle

against HIV disease, would be greatly enhanced with more thorough information on

minority subpopulations.

PREPARED STATEMENT OF THOMAS LIBERTI, CHIEF, BUREAU OF HIV/AIDS, FLORIDA

DEPARTMENT OF HEALTH

My name is Thomas Liberti. I am Chief of the Bureau of HIV/AIDS, Florida Department of Health. I would like to thank the Chairman and the members of the

Subcommittee on Health and Environment for inviting me to submit written testimony on the impact of HIV/AIDS on the health status of racial and ethnicminorities

in Florida and Florida’s response to this challenge.

Florida has 5.5% of the U.S. population, but 10.2% of the 724,656 cumulative

AIDS cases reported in the U.S. through 1999. Florida’s population of more than

15 million people is racially and ethnically diverse: 73% are white, 13% are black,

12% are Hispanic, 1% are Asian/Pacific Islander and less than 1% are American Indian. Minority populations in Florida, particularly blacks, have been disproportionately affected by HIV/AIDS, and the numbers of HIV/AIDS cases in their ranks

have been exacerbated by special issues and barriers associated with HIV prevention, early intervention and patient care. With regard to HIV/AIDS, the racial and

ethnic disparities are quite alarming.

In Florida, blacks have historically had relatively poor access to quality health

care. They tend to have problems associated with poverty, poor schools, inadequate

social services, limited housing, few job opportunities and lack of insurance that impede HIV/AIDS prevention initiatives and access to HIV/AIDS health care. These

issues are further complicated by patterns of substance abuse and sexually transmitted diseases in the black community. In addition, many blacks have a basic lack

of trust in the health care system. The stigma associated with HIV/AIDS continues

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to affect the black community, and blacks often seek help only when they are acutely ill. Prevention and treatment programs in the black community must be built

around sound, culturally appropriate, working relationships that establish and foster trust. The most effective programs for blacks will be those that are driven by

members of the black community. Such programs must address critical issues of late

access to HIV diagnostic and treatment services, which are consistently reflected in

HIV/AIDS trends:

• Compared with the U.S., Florida’s AIDS cases are more likely to be black (46%

versus 37% of total cases), female (21% versus 16%) and heterosexual (16%

versus 10%).

• While blacks comprise 13% of Florida’s population, they account for 46% of the

75,694 AIDS cases and 60% of the 14,765 HIV cases reported in the state

through 1999. (HIV infection reporting was implemented in July 1997.)

• In 1999, blacks accounted for 47% of AIDS cases in men and 73% of those in

women.

• In 1999, the AIDS incidence rate per 100,000 among blacks was 238.3, almost 12

times higher than that for whites (20.4).

• In 1999, blacks accounted for 51% of HIV cases in men and 75% of those in

women.

• It is estimated that more than 35,000 blacks in Florida are currently living with

HIV infection.

• An estimated 1 in 50 blacks are HIV-infected, compared to 1 in 127 Hispanics and

1 in 286 whites.

• Through 1999, among blacks with a reported risk factor for AIDS, 22% were men

who have sex with men, 33% were injection drug users, 5% were both men who

have sex with men and injection drug users, and 38% were those who acquired

HIV through heterosexual contact.

• Among childbearing women in Florida, blacks are at least 10 times more likely

than whites to be HIV-infected.

• 81% of Florida’s 1,374 pediatric AIDS cases and 81% of Florida’s 142 pediatric

HIV cases are black.

• Black women who are heterosexually infected with HIV are the fastest growing

group of infected persons.

• HIV/AIDS is the leading cause of death for both male and female blacks aged 25

to 44 years.

• In 1999, blacks accounted for 58% of all HIV/AIDS deaths.

• The HIV/AIDS death rate per 100,000 population in 1994 was 5.5 times higher

for blacks than for whites; in 1999, the rate increased to 10.9 times higher for

blacks than for whites.

In Florida, Hispanic communities are extremely diverse.

Members of these communities include any persons whose ancestry can be traced

to Cuba, Puerto Rico, Mexico, Central or South America, or other Spanish cultures

or countries of origin regardless of race. During the past 20 years, the Hispanic population has emerged as one of the fastest growing segments of Florida’s population.

Many Hispanics are faced with problems of unemployment, inadequate housing,

poor access to health care, and language barriers.

• Hispanics account for 12% of Florida’s population, but 15% of the cumulative

AIDS cases and 14% of the cumulative HIV cases reported through 1999.

• In 1999, the AIDS incidence rate per 100,000 population among Hispanics was

63.8, three times higher than that for whites(20.4).

• It is estimated that more than 12,000 Hispanics in Florida are currently living

with HIV infection.

• Through 1999, among Hispanics with a reported risk factor for AIDS, 61% were

men who have sex with men, 18% were injection drug users, 5% were both men

who have sex with men and injection drug users, and 14% were those who acquired HIV through heterosexual contact.

• Male-to-male sexual contact is the predominant mode of HIV transmission among

Cubans, while injection drug use predominates among Puerto Ricans.

• HIV/AIDS is the third leading cause of death among Hispanics aged 25-44 years.

• In 1999, Hispanics accounted for 12% of all HIV/AIDS deaths.

• From 1994 through 1999, the HIV/AIDS death rate per 100,000 population has

consistently been more than two times higher than that for whites.

Asian/Pacific Islanders and American Indians comprise 1.4% of Florida’s population. Members of these communities differ widely in language used, cultures and

times of immigration to Florida. Combined, they account for less than 1% of the cumulative AIDS cases reported through 1999. In 1999, their AIDS incidence rate per

100,000 population was 26.0; however, this rate is based on a total of only 17 cases

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reported in 1999. These low numbers may reflect under-counting and data collection

issues.

(Supplemental, supporting data concerning HIV/AIDS and minorities in Florida

are respectfully attached to this testimony for the Committee’s consideration.)

Eliminating disparities in health outcomes is a major priority for the Florida Department of Health and Governor Jeb Bush. Under the leadership of Department

of Health Secretary Robert G. Brooks, M.D., the department has identified the following six major areas of health disparities in culturally and ethnically diverse communities in the state: maternal/ infant mortality, vaccinations, HIV/AIDS, diabetes,

chronic cardiovascular diseases, and cancer. In response to this crisis, the 2000 Legislature passed and funded an act entitled, ‘‘Reducing Racial and Ethnic Health Disparities: Closing the Gap,’’ to improve racial and ethnic health outcomes.

In addition, the Florida Department of Health has made numerous efforts to address the racial and ethnic disparities in HIV/AIDS health outcomes through community-based, culturally sensitive approaches. These efforts include working with

minority, community-based organizations to implement culturally sensitive HIV prevention and treatment programs; facilitating efforts of black clergy and their congregations to mobilize risk-reduction education and supportive attitudes from within

the community; and continuing to work with legislative and other community leaders to assure enhanced resources in areas of greatest unmet need.

In September 1999, Secretary Brooks appointed 23 members to Florida’s Minority

HIV/AIDS Task Force. The task force is composed of representatives from various

groups, including persons infected with HIV or AIDS, minority community-based

support organizations, minority treatment providers, the religious community, and

the Department of Health. The creation of the task force was mandated by HB 2125,

which was passed during the 1999 Legislative Session, largely due to the efforts of

the Legislative Black Caucus.

The Department of Health strongly encouraged the creation of the task force as

a means of addressing the disproportionate impact of HIV/AIDS on minorities. The

task force has been compiling testimony at public meetings throughout the state to

submit a report of its findings and recommendations to the Governor, the President

of the Senate, and the Speaker of the House of Representatives by February 1, 2001.

This report will include:

• specific strategies for reducing the risk of HIV and AIDS in the state’s minority

communities; • a plan for establishing mentor programs and exchanging information and ideas

among minority community-based organizations that provide HIV and AIDS

prevention services; • the needs of prevention and treatment programs within communities and the resources that are available within minority communities; • specific strategies for ensuring that minority persons who are at risk of HIV and

AIDS infection seek testing; • specific strategies for ensuring that persons who test positive for HIV or AIDS are

provided with access to treatment and secondary prevention services; • specific strategies to help reduce or eliminate high-risk behaviors in persons who

test negative but continue to practice high-risk behaviors; and • a plan to evaluate the implementation of the recommendations of the task force.

In November 1999, the Department of Health’s Office of Equal Opportunity and

Minority Health hosted state and national leaders from government, health care

and the minority community at the Inaugural Interagency Minority Health Symposium in Orlando. The symposium, entitled ‘‘Joining Hands, Gathering Solutions,’’ focused on the collaborative roles state agencies can play in eliminating HIV/AIDS

disparities and other health disparities among the state’s minority communities.

During the symposium, presenters provided compelling data and information concerning these issues and discussed access and operational challenges and solutions.

Panels composed of state agency representatives convened to discuss existing and

natural organizational partnerships and to explore ways to maximize the influence

of those partnerships in advancing the health of all Floridians.

In January 2000, the Department of Health, Bureau of HIV/AIDS conducted the

Florida Black Leadership Conference on HIV/AIDS in Fort Lauderdale. This twoday conference brought together community leaders; representatives of faith communities and community based organizations; business leaders; people living with HIV

or AIDS; political leaders; and other partners in the black community. The goal of

the conference was to develop innovative ways to reinforce the black community’s

primary and secondary HIV prevention efforts through educational plenary sessions

and interactive workshops. The diversity of the participants and unique structure

of the conference provided opportunities for the Department of Health to compile

recommendations to help guide future HIV/AIDS programs and policies.

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Other initiatives include the following:

• Establishing the Florida HIV/AIDS Minority Network, a venue for minority community-based organizations and faith-based organizations throughout the state

to share information, ideas, provide peer mentoring and receive expert technical

assistance on infrastructure development and capacity building.

• Conducting ‘‘Church as a Change Agent Workshops,’’ one-day workshops held

with pastors and other leaders in the faith communities, inviting the black

church to partner with the Florida Department of Health on HIV/AIDS prevention initiatives.

• Creating regional minority HIV/AIDS coordinator positions to spearhead local minority initiatives and work cooperatively with existing establishments to

strengthen minority HIV prevention and care organizations.

• Targeting HIV/AIDS funding to minority communities through 40 prevention contracts.

• Implementing the Targeted Outreach to Pregnant Women Act to link at-risk

women to services.

• Providing intensive outreach to bring more minorities into programs such as the

AIDS Drug Assistance Program, the AIDS Insurance Continuation Program and

Housing Opportunities for Persons with AIDS.

• Ensuring that minority HIV/AIDS patients have expanded access to outpatient

medical care, pharmaceuticals, dental services, and case management.

• Partnering with alcohol, drug abuse and mental health programs to develop and

implement HIV/AIDS prevention projects statewide.

• Collaborating with the Department of Corrections to conduct peer education

projects at three large correctional facilities.

The Florida Department of Health recognizes and appreciates the efforts of the

Subcommittee on Health and Environment, the Congressional Black Caucus and the

President’s race initiative to address the root causes of racial/ethnic disparities concerning HIV/AIDS. We are encouraged that our nation’s leaders have entered into

such meaningful partnerships with the states, through which culturally sensitive

HIV/AIDS prevention and patient care programs can be further developed and implemented to close the racial/ethnic gap.

I would like to thank you, once again, for the opportunity to provide testimony

on the impact of HIV/AIDS on minorities in Florida, and our response to the challenges of this devastating epidemic.

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June 16, 2000

MICHAEL BILIRAKIS, Chairman

Subcommittee on Health and Environment

U.S. House of Representatives

Committee on Commerce

Room 2125, Rayburn House Office Building

Washington, DC 20515-6115

DEAR MR. BILIRAKIS: As requested in your letter of June 2, 2000, I am providing

supplemental information to my testimony of May 11. I have restated each question,

and followed it with my response.

Question: The Commonwealth of Virginia reports both cases of HIV and AIDS.

Does reporting the full scope of HIV infection and not just the end stage, AIDS, provide better opportunities to address prevention and care and any disparities that

may exist?

Response: HIV reporting provides data for identifying populations in which HIV

has been newly diagnosed, whereas AIDS reporting usually identifies individuals infected years ago. In 1999 in Virginia, women comprised 31% of reported HIV cases,

but just 23% of reported AIDS cases. While the 1999 racial breakdown for reported

African-American HIV cases (69%) compared to AIDS cases (66%) does not now

show a large difference, the trend to increasing proportions in minority populations

was identified several years earlier because Virginia had HIV reporting.

Age differences are also seen between AIDS and HIV cases. Of 52,690 HIV infections diagnosed from January 1994 through June 1997 in 25 states that conducted

name-based surveillance, 14% of the cases occurred in persons aged 13-24 years. In

comparison, only 3% of AIDS cases occurred within this age group in the same time

period. Thus, AIDS case surveillance alone does not accurately reflect the extent of

the HIV epidemic among adolescents and young adults.

Required HIV reporting therefore catches changing demographics of cases far earlier than AIDS reporting alone can do. This allows earlier determination of populations at risk and behavioral risk factors, and earlier targeted resource allocation

to address recognized changes.

Since 1996, HIV treatment utilizing a combination of anti-retroviral medications

has prevented many individuals with HIV infection from progressing to AIDS. AIDS

reporting alone would never capture these individuals. Therefore, states that have

documented cases of both AIDS and HIV infection provide a more reliable and useful estimate of the resources needed for patient care and services than AIDS prevalence alone.

Question: Surgeon General Satcher testified that he supports the CDC recommendations made last December to move states to HIV name reporting, while the

Commonwealth of Virginia has conducted HIV name reporting and partner notification for over a decade. Has the minority community (or any community) voiced objections to these practices? Has there ever been a breach of patient confidentiality

that has resulted from either of these practices?

Response: There has never been a breach of confidentiality, and I am confident

in the ability of staff of the Division of HIV/STD to handle information professionally. Periodically, the minority community has raised questions in public meetings, forums, and presentations addressing minority health and AIDS issues. Concerns have typically focused upon misconceptions regarding both the name-based reporting and partner notification processes. These questions have been addressed by

providing information about the Division of HIV/STD’s policies regarding confidentiality. All employees are required to review and sign confidentiality statements outlining the procedures to be followed when processing all HIV/STD epidemiological

documents.

Presentations describing the Virginia Department of Health’s (VDH) commitment

to confidential partner notification, along with an explanation of methods used to

notify individuals, have been helpful in alleviating the public’s concerns and clearing

up misconceptions. In addition, VDH speakers review HIV-related legislation that

outlines confidentiality requirements and penalties for non-adherence, in order to

stress the legal protections provided by existing policies and procedures. The Assistant Attorney General assigned to VDH provides legal guidance and interpretation

of policy to localities, further enhancing a consistent approach to these issues.

Question: As you know, women and minorities are represented in higher proportions in HIV case reports than in AIDS case reports. Do you believe that changing

Ryan White CARE Act funding formulas to take into account HIV cases, rather than

just AIDS cases, would be an effective way to better target funding and address

some of the health disparities that exist for minorities?

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Response: HIV reports present a more accurate picture of the current epidemic

than do AIDS reports alone. By monitoring HIV as well as AIDS, Virginia has been

able to track the increased percentages of cases that have occurred among minorities and women. If all states reported HIV, then HIV cases could be included in the

formula for determining Ryan White funding, and the funds could be more accurately targeted to current needs, earlier intervention and hopefully decreased transmission. More accurate targeting and program planning could assist with addressing some of the health disparities that exist for minorities.

Question: Is partner notification a worthwhile prevention tool for HIV? Is it an

effective intervention to identifying at-risk individuals and getting them into prevention and care programs?

Response: Partner notification is a very worthwhile tool for HIV and comparable

to how pubic health treats other communicable sexually transmitted diseases. HIV

counseling and testing data for Virginia STD clinics for 1986-1998 indicate that

3,658 individuals received HIV testing as a result of being referred as partners of

someone with HIV. Of those, 338 (9.2%) tested positive. Cumulatively, about 1% of

STD patients has tested positive for HIV; therefore, partner notification clearly assists in identifying higher risk populations and therefore increases the testing and

educating of individuals at increased risk. The 338 partners testing positive were

also assisted in accessing medical and support care, including the AIDS Drug Assistance Program (ADAP) and other Ryan White services.

Question: Is there any evidence to substantiate claims that name-based HIV case

reporting discourages individuals from seeking HIV testing or care?

Response: Contrary to the claim that name-based case reporting discourages individuals from seeking HIV testing and care, several studies have shown that namebased reporting does not hinder individuals from seeking testing. Virginia’s confidential testing numbers have remained relatively level over the last few years,

while anonymous testing has decreased from 10,393 (12% of total tests) in 1992 to

5,518 (7% of total tests) in 1998.

Question: Intravenous drug use is a factor for the spread of HIV. Would you say

that it should be a priority to develop programs for the treatment of heroin addicts

by a new class of heroin-blocking drugs?

Response: Evidence indicates that the new heroin-blocking drugs offer effective alternatives to the current medications available for treating heroin addiction. The

Department of Mental Health, Mental Retardation, and Substance Abuse Services

(DMHMRSAS) is the agency in Virginia that has responsibility for substance abuse

treatment, and has indicated that developing programs for heroin addicts with the

new heroin-blocking drugs is a priority. DMHMRSAS is currently developing a research protocol to address this issue. I look forward to hearing follow up reports

from DMHRSAS on their efforts and results.

Question: The Administration stated in their testimony that ‘‘Vietnamese women

suffer from cervical cancer at nearly five times the rate of white women.’’ Why is

that? Is it a cultural factor linked to the willingness to get screened? Are you doing

anything to reach out to this community?Response: Those who work with the Vietnamese community believe that the high incidence of cervical cancer among Vietnamese women is because many have no insurance and are impoverished. They generally do not have an orientation to preventive care. They will seek help for their

children, but not for themselves. Since they have not received screening, they are

diagnosed at a later stage of the disease. Even when they are symptomatic, they

are reluctant to seek help for themselves. For illegal aliens, immigration issues may

also present a barrier to seeking care.

The VDH Breast and Cervical Cancer Early Detection Program (BCCEDP) is

working with the National Asian Women’s Health Organization (NAWHO) to sponsor a pilot training program later in the year entitled ‘‘Communicating Across

Boundaries.’’ The purpose of this training is to improve the skills and capacity of

local and state breast and cervical cancer health care programs and providers in the

provision of culturally competent screening services to Asian American women.

The Centers for Disease Control and Prevention, through the BCCEDP, provides

funding for screening for breast and cervical cancer throughout the state of Virginia

for women 50-64 years of age who are uninsured or underinsured, and at 200% of

poverty level or less. Recipients must be legal residents of the United States. The

Vietnamese Resettlement Association in Northern Virginia is an administrative provider site for the BCCEDP. Asian women represent one of the minority populations

targeted by the BCCEDP for screening services for breast and cervical cancer.

Please let me know if you need any additional information.

Sincerely,

E. ANNE PETERSON, MD, MPH

State Health Commissioner

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June 13, 2000

The Honorable MICHAEL BILIRAKIS

Chairman

Subcommittee on Health and Environment

U.S. House of Representatives

Committee on Commerce

Room 2125, Rayburn House Office Building

Washington, D.C. 20515-6115

DEAR CONGRESSMAN BILIRAKIS: Thank you for your letter of June 2 regarding my

testimony before the Subcommittee on Health and Environment on May 11, 2000

on H.R. 3250, the Health Care Fairness Act of 1999. I have addressed the members

questions below.

Our study carefully assessed the influence of six patient characteristics or study

variables on physician decision making: race, sex, age, type of chest pain, medical

history and exercise stress test results. These were the only variables that differed

across the 144 cases we presented to the participating physicians (our study subjects). All patients in the study had the same address, the same job description (active or retired), and the same type of insurance (Private or combined private/Medicare). Thus, we did not vary geographic characteristics of the patients in our study.

We recruited our physician sample at two national meetings of physician specialty

societies. Thus, participating physicians were drawn from across the country. However, we did not collect information on physician practice location as one of our physician demographic variables.

In comparison to the Wennberg work cited in the letter, we found variation in

physician decision making based on patient characteristics in identical settings. The

study was not designed to test whether geographical factors have an additional

interaction with patient characteristics in physician decision making.

Sincerely,

KEVIN A. SCHULMAN, M.D., Director

Center for Clinical and Genetic Economics

Duke Clinical Research Institute, Duke University Medical Center

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