U.S. GOVERNMENT PRINTING OFFICE

WASHINGTON : 

For sale by the Superintendent of Documents, U.S. Government Printing Office

Internet: bookstore.gpo.gov Phone: toll free (866) 512–1800; DC area (202) 512–1800

Fax: (202) 512–2250 Mail: Stop SSOP, Washington, DC 20402–0001

86–436 PDF 2003

RACIAL DISPARITIES IN HEALTH CARE:

CONFRONTING UNEQUAL TREATMENT

HEARING

BEFORE THE

SUBCOMMITTEE ON CRIMINAL JUSTICE,

DRUG POLICY AND HUMAN RESOURCES

OF THE

COMMITTEE ON

GOVERNMENT REFORM

HOUSE OF REPRESENTATIVES

ONE HUNDRED SEVENTH CONGRESS

SECOND SESSION

MAY 21, 2002

Serial No. 107–196

Printed for the use of the Committee on Government Reform

(

Available via the World Wide Web: http://www.gpo.gov/congress/house

http://www.house.gov/reform

(II)

COMMITTEE ON GOVERNMENT REFORM

DAN BURTON, Indiana, Chairman

BENJAMIN A. GILMAN, New York

CONSTANCE A. MORELLA, Maryland

CHRISTOPHER SHAYS, Connecticut

ILEANA ROS-LEHTINEN, Florida

JOHN M. MCHUGH, New York

STEPHEN HORN, California

JOHN L. MICA, Florida

THOMAS M. DAVIS, Virginia

MARK E. SOUDER, Indiana

STEVEN C. LATOURETTE, Ohio

BOB BARR, Georgia

DAN MILLER, Florida

DOUG OSE, California

RON LEWIS, Kentucky

JO ANN DAVIS, Virginia

TODD RUSSELL PLATTS, Pennsylvania

DAVE WELDON, Florida

CHRIS CANNON, Utah

ADAM H. PUTNAM, Florida

C.L. ‘‘BUTCH’’ OTTER, Idaho

EDWARD L. SCHROCK, Virginia

JOHN J. DUNCAN, JR., Tennessee

JOHN SULLIVAN, Oklahoma

HENRY A. WAXMAN, California

TOM LANTOS, California

MAJOR R. OWENS, New York

EDOLPHUS TOWNS, New York

PAUL E. KANJORSKI, Pennsylvania

PATSY T. MINK, Hawaii

CAROLYN B. MALONEY, New York

ELEANOR HOLMES NORTON, Washington,

DC

ELIJAH E. CUMMINGS, Maryland

DENNIS J. KUCINICH, Ohio

ROD R. BLAGOJEVICH, Illinois

DANNY K. DAVIS, Illinois

JOHN F. TIERNEY, Massachusetts

JIM TURNER, Texas

THOMAS H. ALLEN, Maine

JANICE D. SCHAKOWSKY, Illinois

WM. LACY CLAY, Missouri

DIANE E. WATSON, California

STEPHEN F. LYNCH, Massachusetts

———

BERNARD SANDERS, Vermont

(Independent)

KEVIN BINGER, Staff Director

DANIEL R. MOLL, Deputy Staff Director

JAMES C. WILSON, Chief Counsel

ROBERT A. BRIGGS, Chief Clerk

PHIL SCHILIRO, Minority Staff Director

SUBCOMMITTEE ON CRIMINAL JUSTICE, DRUG POLICY AND HUMAN RESOURCES

MARK E. SOUDER, Indiana, Chairman

BENJAMIN A. GILMAN, New York

ILEANA ROS-LEHTINEN, Florida

JOHN L. MICA, Florida,

BOB BARR, Georgia

DAN MILLER, Florida

DOUG OSE, California

JO ANN DAVIS, Virginia

DAVE WELDON, Florida

ELIJAH E. CUMMINGS, Maryland

ROD R. BLAGOJEVICH, Illinois

BERNARD SANDERS, Vermont

DANNY K. DAVIS, Illinois

JIM TURNER, Texas

THOMAS H. ALLEN, Maine

JANICE D. SCHAKOWKY, Illinois

EX OFFICIO

DAN BURTON, Indiana HENRY A. WAXMAN, California

CHRISTOPHER DONESA, Staff Director

ROLAND FOSTER, Professional Staff Member

CONN CARROLL, Clerk

JULIAN A. HAYWOOD, Minority Counsel

(III)

C O N T E N T S

Page

Hearing held on May 21, 2002 ............................................................................... 1

Statement of:

Christensen, Hon. Donna M., a Delegate in Congress from the territory

of the Virgin Islands; Dr. Thomas LaVeist, associate professor, Johns

Hopkins School of Public Health; Dr. Lisa Cooper, associate professor,

Johns Hopkins University School of Medicine; and Dr. Elena Rios,

president, National Hispanic Medical Association ..................................... 112

Ruffin, John, Ph.D., Director, National Center on Minority Health Disparities, National Institutes of Health; Nathan Stinson, Jr., Ph,D.,

M.D., M.P.H., Deputy Assistant Secretary for Minority Health, Office

of Public Health and Science; Ruben King-Shaw, Jr., Deputy Administrator and Chief Operating Officer, Centers for Medicare and Medicaid

Services; Carolyn Clancy, M.D., Acting Director, Agency for Healthcare

Research and Quality, U.S. Department of Health and Human Services .................................................................................................................. 28

Letters, statements, etc., submitted for the record by:

Christensen, Hon. Donna M., a Delegate in Congress from the territory

of the Virgin Islands, prepared statement of .............................................. 115

Clancy, Carolyn, M.D., Acting Director, Agency for Healthcare Research

and Quality, U.S. Department of Health and Human Services, prepared

statement of ................................................................................................... 95

Cooper, Dr. Lisa, associate professor, Johns Hopkins University School

of Medicine, prepared statement of ............................................................. 126

Davis, Hon. Danny K., a Representative in Congress from the State

of Illinois, prepared statement of ................................................................ 10

King-Shaw, Ruben, Jr., Deputy Administrator and Chief Operating Officer, Centers for Medicare and Medicaid Services, prepared statement

of ..................................................................................................................... 80

LaVeist, Dr. Thomas, associate professor, Johns Hopkins School of Public

Health, prepared statement of ..................................................................... 146

Rios, Dr. Elena, president, National Hispanic Medical Association, prepared statement of ........................................................................................ 136

Ruffin, John, Ph.D., Director, National Center on Minority Health Disparities, National Institutes of Health, prepared statement of ................ 32

Souder, Hon. Mark E., a Representative in Congress from the State

of Indiana, prepared statement of ............................................................... 3

Stinson, Nathan, Jr., Ph,D., M.D., M.P.H., Deputy Assistant Secretary

for Minority Health, Office of Public Health and Science, prepared

statement of ................................................................................................... 55

Waxman, Hon. Henry A., a Representative in Congress from the State

of California, prepared statement of ........................................................... 26

(1)

RACIAL DISPARITIES IN HEALTH CARE:

CONFRONTING UNEQUAL TREATMENT

TUESDAY, MAY 21, 2002

HOUSE OF REPRESENTATIVES,

SUBCOMMITTEE ON CRIMINAL JUSTICE, DRUG POLICY AND

HUMAN RESOURCES,

COMMITTEE ON GOVERNMENT REFORM,

Washington, DC.

The subcommittee met, pursuant to notice, at 12:09 p.m., in room

2154, Rayburn House Office Building, Hon. Mark E. Souder (chairman of the subcommittee) presiding.

Present: Representatives Souder, Cummings, and Davis of Illinois.

Also present: Representative Waxman.

Staff present: Christopher Donesa, staff director and chief counsel; Roland Foster, professional staff member; Conn Carroll, clerk;

Julian A. Haywood, minority counsel; Karen Lightfoot, minority

senior policy advisor; Josh Sharfstein, minority professional staff

member; and Jean Gosa, minority assistant clerk.

Mr. SOUDER. The subcommittee will now come to order.

Good afternoon. I’d like to thank all of you for being here today.

I want to start by recognizing and thanking Ranking Member

Cummings for raising the issue of racial disparities in health care.

We have scheduled today’s hearing at his request.

I would like to express my own serious concerns at the findings

which we will be reviewing today. They ought to be of concern to

all Americans because the Institute of Medicine has raised fundamental questions that could continue to weaken public perception of the health care system, threaten to perpetuate a health gap

between minorities and nonminorities if not addressed, and further

challenge already beleaguered health care providers.

A comprehensive report by the Institute of Medicine released in

March of this year found that minorities in America generally receive poorer health care than whites even when income, insurance

and medical conditions are similar. The IOM found that this inequality has contributed to higher minority death rates from a host

of chronic conditions.

For example, relative to Caucasians, African Americans and Hispanics are less likely to receive appropriate cardiac medication or

to undergo coronary artery bypass surgery even when factors such

as insurance and income are taken into account. African Americans

with end-stage renal disease are less likely to receive hemodialysis

and kidney transplantation, and African American and Hispanic

2

patients with bone fractures seen in hospital emergency departments are less likely than whites to receive pain medication.

The report identified a number of causes for racial health disparities including language barriers, inadequate coverage, provider

bias and lack of minority doctors.

In addition to other recommendations for remedying these disparities which we will discuss more in depth, the IOM suggested

that public awareness should be raised of this issue. We hope to

further that goal today and discuss with representatives from the

administration and other witnesses how best to close the gap.

The IOM report is at least the fourth study released this year indicating racial disparities in the health care system. A January

Centers for Disease Control and Prevention [CDC], report found

that although the health gap between whites and minorities narrowed in the 1990’s, substantial disparities remain. A Commonwealth Fund survey released earlier this month found that minorities do not fare as well as whites on almost every measure of

health care quality. And a Harvard study released earlier this

month found that African American patients enrolled in Medicare/

Choice plans receive poorer quality of care than Caucasian patients

across several measures.

In November 2000, Congress passed the Minority Health and

Health Disparities Research and Education Act of 2000, which is

now Public Law 106–525, to confront many of the shortcomings

noted in these reports. This law established the National Center on

Minority Health and Health Disparities at the National Institutes

of Health, provided increased fundings and incentives for minority

health and health disparities research and new support for education for both health professionals and patients to increase positive health outcomes for minorities. It also provided funding for

schools that are researching health disparities.

While it is too soon to determine what effects this law has made,

it is clear that more must be done to improve patient care for minorities. Particularly patients must have the ability to take control

of their own health care decisionmaking. To do so will require improved patient education access to affordable care and more choice

in making health care decisions.

I look forward to today’s testimony from the administration and

health care leaders on how best to move toward meaningful

progress, and I want to encourage the Department of Health and

Human Services to move promptly toward tangible steps to help

level the quality of care.

Again, I thank Congressman Cummings for his leadership in

bringing this important issue before us today, and I look forward

to continuing to work in the subcommittee toward an equality of

health care opportunities and care for all Americans.

[The prepared statement of Hon. Mark E. Souder follows:]

3

4

5

6

Mr. SOUDER. I’d now like to yield to Mr. Cummings for an opening statement.

Mr. CUMMINGS. Thank you, Mr. Chairman, and I thank you for

agreeing to my request to holding this important hearing today.

Today we will examine the progress that this Nation is making toward creating a health care system in which being a minority is

not a mortality factor. As a Member of Congress and as an American of color, I deeply appreciate your willingness to examine the

unequal treatment that minority Americans continue to receive

within America’s health care system, especially the compelling and

disturbing evidence analyzed by a blue ribbon panel of scientists

under the auspices of the Institute of Medicine.

I join with you, Mr. Chairman, in welcoming all of our witnesses

from the Department of Health and Human Services today, and

particularly I want to thank Dr. Ruffin for being here under very

difficult circumstances. Your presence here today speaks volumes

about your commitment to fighting the persistent disparities we

find in our Nation’s health care system, and I thank you.

And our second panel, we’ll hear from our colleague Congressman Donna M. Christensen from the Virgin Islands, a physician

who has a long-standing interest in issues surrounding minority

health disparities; as well as Dr. Elena Rios, president of the National Hispanic Medical Association.

Finally, let me also express a special welcome to the important

witnesses who are joining us here today from Johns Hopkins University in Maryland’s 7th Congressional District, which is, of

course, the district I represent. Dr. Thomas LaVeist, the associate

professor in the Bloomberg School of Public Health, and Dr. Lisa

A. Cooper, who serves as associate professor on the faculties of both

the Bloomberg School of Public Health and the School of Medicine.

Mr. Chairman, in 1998, with strong encouragement from the

Congressional Black Caucus, President Clinton committed this Nation to eliminating racially based health disparities in six specific

areas by the year 2010. Those areas were infant mortality, cancer,

cardiovascular diseases, diabetes, HIV infection, AIDS and immunizations. To their credit HHS Secretary Thompson and the Bush

administration have reaffirmed this important national objective.

Naturally, in order to cure and eliminate minority health disparities, we must first arrive at the understanding of their nature and

causes. That is why I was proud to join with Congressman Bennie

Thompson of Mississippi and other colleagues who care deeply

about this issue in sponsoring legislation to create the National

Center on Minority Health and Health Disparities at the National

Institutes of Health. The Center’s support for the IOM disparity

studies was critical, and I want to recognize the efforts of my good

friend and colleague Congressman Jesse Jackson, Jr., and the other

Members of Congress who worked diligently to secure funding for

the Center and for the study in the appropriations process.

Today we will discuss the implications of that study entitled Unequal Treatment: Confronting Racial and Ethnic Disparities in

Health Care. The IOM’s central conclusion is that Americans of

color tend to receive lower quality health care even when the patient’s income and insurance plans are the same, and that these

disparities contribute to our higher death rates and poorer health

7

outcomes from heart disease, cancer, diabetes, HIV/AIDS and other

life-endangering conditions.

This unfortunate indictment of our health care system by America’s health care establishment is a monumental moral challenge to

the policymakers of this great country. We have known for years

that Americans of color die before our time from a wide range of

illnesses, and that black mortality rates are higher than those of

Caucasians. While lack of health care access has played an obvious

role, the impact of racial biases and stereotypes on the quality of

medical care received has been more difficult to assess. The IOM

report demonstrates that these phenomena do exist, and we must

now ensure that America’s medical establishment comes to terms

with the impact of race as an independent factor.

When we know that the quality of care one receives in a doctor’s

office or in an emergency room may depend upon the color of one’s

skin, it is clear that we are dealing with a national civil rights

issue of the highest order, and we must address it in those terms.

Unless we dramatically expand the civil rights remedies available

to people of color, the national 2010 initiative to eliminate racial

and ethnic health disparities will simply fail. Title 6 enforcement

is critical, and we must provide resources to the Office of Civil

Rights so that it can aggressively enforce the civil rights laws and

regulations that exist to protect Americans from discrimination in

the health care system. Discriminatory effects of policies that limit

minority access to medical care continue to be deadly, and without

effective remedies, we will not see them go away.

Our witnesses will address a range of other initiatives that must

be undertaken if we were to achieve the administration’s goal, the

Nation’s goal, of ending racial disparities in health care. As the

IOM report tells us, education of both patients and providers improved data collection and monitoring, and increasing the proportion of minority health professionals are promiment among them.

Mr. Chairman, I hope we can develop some consensus around implementing these initiatives so that the race will no longer be a

predictor of negative health care outcomes, and I again thank you

for holding this hearing. Thank you as well to all of our witnesses

for being with us today. I look forward to hearing your testimony.

Mr. SOUDER. Thank you.

I now yield to Mr. Davis.

Mr. DAVIS OF ILLINOIS. Thank you, Mr. Chairman, and let me

first of all thank you for holding this hearing. I also want to commend the ranking member, Representative Cummings, for bringing

this subject matter to this venue.

I would like to ask for permission to submit my statement for the

record, to revise and extend it, and also thank my young colleague

who’s graduating from medical school next month, Scott, for preparing it. And I look forward to attending his graduation, where I

am scheduled to be the commencement speaker.

I’ve been around this issue now for close to 40 years, and we’ve

been talking about disparities. When it comes to minorities, there

are disparities in everything that deal with quality of life in these

United States of America. And I guess if there’s anything that I’ve

learned, one of the things that I’ve learned and discovered is that

change is oftentimes a rather slow and subtle process. Matter of

8

fact, people have been talking about problems of health care in a

documented way in this country ever since the 1800’s, when I guess

one of the first real studies were put together in Massachusetts,

something called the Shattuck report. And I find that the same

problems that were being talked about then are being talked about

now relative to what the issues are when it comes to health care.

Obviously one of the real factors contributing to disparities facing

African Americans and other minority groups is the disparity of income, is the issue of poverty, the issue of people being poor and not

having resources.

I always suggest that my mother died prematurely because she

had to travel from the small town where she lived in Arkansas to

the University Medical Center in Little Rock in order to get treatment for the dialysis problem, the kidney problems that she was

having.

I’ve known other individuals who could not get treatment because there was not the availability of resources where they were.

And then, of course, you look in other places and there is an overabundance of resources.

I represent a congressional district that has 23 hospitals in it,

four medical schools, 25 community health centers, three or four

large research institutes. And so the problem there is not necessarily the unavailability of care. But you can go 2 miles from the

largest medical center complex in the country, which is in my congressional district, and find some of the most dire health needs and

health statistics that exist.

And so it seems to me that in many ways we have a certain

amount of skill; we probably do some of the best medical education

in the world. Something called the Flexner Report was put out,

but—not only did it improve medical education, but it also put

most of the black medical schools out of business, and they have

not come back yet. I think it left only two, Howard and Meharry.

So it seems to me that when we talk about disparities, we’re

really talking about how willing are we, as a Nation, to live up to

the notion that we can move toward equal justice, equal opportunity. There is still a paucity of African Americans who are

trained medical personnel. You look at the disparities in terms of

the numbers of physicians and other professionals who are African

Americans, and we still have the same problem. And so there needs

to be a revamping, I think, of the system, more emphasis placed

upon education, more emphasis placed upon life-style, more emphasis placed upon the desire and the need to be healthy.

Of course, when it comes to racism and race orientation and all

of those factors, we know that’s not so much a factor of skill, but

it’s a factor of will.

And so the struggle must continue. One of the things that Frederick Douglass taught that I try and subscribe to is that if there

is no struggle, there is no progress. And so when you, Mr. Chairman, will hold a hearing on this subject in this committee, that is

a part of the continuing and ongoing struggle.

And you, Mr. Cummings, when you will raise the issue in this

committee so that we can have the kind of discussion with the experts who have come to testify—and I want to thank all of them

for coming and bringing their expertise. But what we really need

9

to do is move toward a national health system, a national health

plan, everybody in, nobody out, a system that takes the idea that

health care is indeed a right and not a privilege. And a country

with as much technology, with as much proficiency, as much resource and as much understanding as we have can, in fact, do that.

So I thank you and look forward to the information that will be

shared by our expert panelists. And I yield back the balance of my

time.

[The prepared statement of Hon. Danny K. Davis follows:]

10

11

12

13

14

15

16

17

18

19

20

21

22

23

24

Mr. SOUDER. I’d like to yield to the distinguished gentleman from

California, the ranking member of the full committee and member

of the subcommittee, Mr. Waxman.

Mr. WAXMAN. Thank you, Mr. Chairman.

Democrat or Republican, conservative or liberal, I do not believe

there is any Member of Congress who can ignore the findings of the

March 2002 report from the Institute of Medicine called ‘‘Unequal

Treatment.’’ This landmark report surveyed hundreds of scientific

studies and found significant disparities in medical treatment and

life-or-death outcomes by race and ethnicity.

What the report found was tragic. Minorities are less likely to receive needed cardiac medication and cardiac surgery and are less

likely to receive kidney dialysis or transplants. Minorities are also

less likely to receive the most effective treatments for HIV. Minorities are also less likely to have their pain adequately treated. The

list goes on and on.

Here in Congress we are proud of our record of expanding NIH

funding to develop new breakthrough treatments for diseases that

cause immense human suffering, but these efforts are tarnished if

we cannot make the treatments available. We have accomplished

little if we permit the fruits of research to remain out of the reach

of so many thousands of American citizens.

It is a testament to the importance of this issue that the Subcommittee on Criminal Justice has called this hearing in bipartisan

fashion, and I commend the Chair, Representative Souder, and the

ranking member, Representative Cummings, for their leadership.

Today, we will hear about the findings of the Institute of Medicine panel. We will also discuss solutions. It is not enough just to

denounce health disparities. We must also take action to reduce

them. The Institute of Medicine report includes a set of recommendations that I hope we will explore today.

For example, one recommendation is that patients with public insurance receive the same managed care protections as those in private insurance. Because patients on Medicaid and other public insurance programs are disporportionately minorities, inadequate patient protections can increase health disparities. We need to ask

whether the current administration is committed to following this

recommendation.

The Institute of Medicine panel also supports funding for innovative efforts to deliver medical care so that all patients, regardless

of ethnicity or race, receive necessary treatments. We need to ask

whether the current administration has supported full funding for

such initiatives.

The Agency for Healthcare Research and Quality has developed

a program to accomplish some of these ideas. We need to ask

whether the current administration is supporting full funding for

these initiatives.

The report calls for efforts to fight discrimination against racial

and ethnic minorities in the health care system. We need to ask

whether the current administration has backed away from a rule

to prevent discrimination against Medicaid patients, many of whom

are minorities.

I am pleased that the administration has sent several witnesses

from the Department of Health and Human Services here today. I

25

am also pleased that several experts from medical professional associations and the Institute of Medicine have come for today’s second panel. And I hope that today’s hearing is not an end, but a beginning. By discussing the policies that are necessary to address

health disparities, this hearing can be an important step toward a

greater understanding of the commitment that Congress, as well as

the medical profession, must make to provide equal treatment in

the United States.

Thank you very much, Mr. Chairman.

Mr. SOUDER. Thank you.

[The prepared statement of Hon. Henry A. Waxman follows:]

26

27

28

Mr. SOUDER. Before proceeding, I’d like to take care of a couple

of procedural matters.

First, I ask unanimous consent that all Members have 5 legislative days to submit written statements and questions for the hearing record, that any answers to written questions provided by the

witnesses also be included in the record.

Without objection, it is so ordered.

Second, I ask unanimous consent that all exhibits, documents

and other materials referred to by Members and the witnesses may

be included in the hearing record and that all Members be permitted to revise and extend their remarks.

Without objection, it is so ordered.

We begin with our panel of administration witnesses. We have

excellent representation from the department today, for which I’d

like to thank each of you and the department. As I’m sure most of

you know, we also ask you to summarize your testimony in 5 minutes, and we will include your complete statement in the record. As

an oversight committee, it’s our standard practice to ask all of our

witnesses to testify under oath, so if each of you could rise, I’ll administer the oath.

[Witnesses sworn.]

Mr. SOUDER. Let the record show that each witness responded in

the affirmative.

As you have heard, Dr. John Ruffin, Director of the National

Center on Minority Health and Health Disparities, has had some

family matters that he has to attend to. And we want to express

our sympathy to you and your family for your struggles. And because of that, we’re going to have you give your testimony and then

take some questions; and then you can be excused because we

know you need to get on to that.

But we thank you for taking the time to come to us today for this

hearing.

STATEMENTS OF JOHN RUFFIN, Ph.D., DIRECTOR, NATIONAL

CENTER ON MINORITY HEALTH DISPARITIES, NATIONAL INSTITUTES OF HEALTH; NATHAN STINSON, JR., Ph,D., M.D.,

M.P.H., DEPUTY ASSISTANT SECRETARY FOR MINORITY

HEALTH, OFFICE OF PUBLIC HEALTH AND SCIENCE; RUBEN

KING-SHAW, JR., DEPUTY ADMINISTRATOR AND CHIEF OPERATING OFFICER, CENTERS FOR MEDICARE AND MEDICAID SERVICES; CAROLYN CLANCY, M.D., ACTING DIRECTOR,

AGENCY FOR HEALTHCARE RESEARCH AND QUALITY, U.S.

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Mr. RUFFIN. Thank you, Mr. Chairman.

Good afternoon, Mr. Chairman and Mr. Cummings and other

members of the subcommittee. I’m honored to join you today as the

first Director of the National Center on Minority Health and

Health Disparities for this special hearing on racial disparities in

health.

It is quite timely for me to update you on work of the new center

to eliminate health disparities in light of the recent findings in the

IOM report.

To echo the words of the Deputy Secretary of Health and Human

Services Claude Allen, these are issues that we in the Department

29

have been confronting and working to resolve for many years. We

are always alarmed, however, by the extent and impact of health

disparities across our Nation.

One of the great challenges we have faced over the past decade

is the need to convince people that these problems are real and

that they can be addressed through science. The IOM report helped

greatly in this regard by serving to further document this crisis.

As you know, the new center at the NIH was created by Public

Law 106–525, the Minority Health and Health Disparities Research and Education Act of 2000. The timing could not have been

better. The law has help us transition from the NIH Office of Research on Minority Health to a new center designated to address

health disparity issues from a research perspective. The Center

cannot do this alone, however. In fact, no single agency can do this

alone. The health disparity crisis is multifaceted and will require

a multidisciplinary approach from institutions across the country.

Ours is an NIH-wide effort with the Center at the focal point. To

reduce and eliminate health disparities, we will work with our

other partners at NIH, but we will also work with other agencies

and outside organizations and institutions involved in health disparities.

We at the table this morning are networking among ourselves

and with our constituencies. Only in this way will we be able to

produce the results that will address the IOM recommendations.

We have asked our stakeholders across the country what should we

be doing that we’re not doing. We have taken their advice and are

now developing the NIH strategic plan and budget to reduce and,

ultimately, eliminate health disparities.

We also have three core programs provided in law that established our center. Our loan repayment program will give us an opportunity to produce a core of individuals who are culturally sensitive to health disparities. This type of program has worked well

in other areas, such as HIV/AIDS. This work force—doctors, researchers, nurses, health care professionals—will sensitize even

more individuals to the health disparities and help us combat the

crisis.

In fiscal year 2001, as a result of the creation of the Center and

the creation of the loan repayment program, 8 months after the

creation of the Center, 45 health professionals received loan repayment programs or loan repayment awards. We will set up a new

round of competition for additional awards to be made this year.

We must sensitize not only individuals, but also institutions to

the health disparity crisis. Our endowment program, also provided

by law, is available to section 736 institutions under the Public

Service Act. This program will provide assistance for training and

research and will bring more individuals into the health disparity

research arena. Seven institutions were approved for awards in fiscal year 2001. Payments already have been made to five of these

institutions, and payments are on the way for the other two institutions.

We also are now accepting applications for the next round of

competition and plan to make more awards this year. This is a collaborative effort between the National Institutes of Health and

HRSA.

30

The crown jewel of all of our efforts will be the creation of our

Health Disparity Centers of Excellence around the country. We will

establish these centers across the country to level the playing field

supporting a wide array of institutions to engage in research, research training and health disparities.

We have developed three mechanisms, Mr. Chairman, of support

for this program in order to involve institutions at all levels of capability. We are currently accepting applications and plan to make

awards this year.

We also continue to buildupon our collaborative relationships

with our HHS partners, many of whom are sitting at the table.

Last year, we participated in 214 collaborative projects. This year

we have received over 250 requests to cofund new initiatives from

other NIH institutes and centers. This is a testament—it is an indication of the seriousness of the health disparity issues.

While we would like to fund them all, there are congressional

mandates within the new center that we’re also committed to.

However, we will maintain our obligation to several other NIH institutes and centers projects as well as our support to various

OMH, AHRQ and CDC projects.

With the Centers for Disease Control, we continue to support the

Reach 2010 program of Racial and Ethnic Approaches to Community Health, which is entering its second phase. This program is a

cornerstone initiative aimed at eliminating disparities in health

status experienced by ethnic minority populations, and I’m sure

those at CDC will talk more about their collaboration with the National Institutes of Health and our support for that program.

The collaboration of the National Center on Minority Health and

Health Disparities collaborated with the Office of Minority Health

of the Department of Health and Human Services. It is broadbased, and it includes the goals of increasing research on minority

health issues, collecting data, improving the data base, increasing

the recruitment and retention of minority students in biomedical

science and conducting community outreach and public education

programs.

There’s a whole host of programs for which we collaborate with

the Office of Minority Health with AHRQ. The Agency for

Healthcare Research and Quality supports several programs aimed

at understanding and eliminating health disparities that focus on

community outreach, building research capacity and training. The

Center provides funding for many of these projects, particularly the

EXCEED program. It is our intent to continue to support these efforts and to continue to collaborate with our various partners.

The Center continues to explore and develop future initiatives for

research activities and programs aimed at reducing and eliminating health disparities. We will be meeting with our new advisory

council in the coming weeks to discuss a number of new initiatives

that we plan to launch.

The Center is considering a cultural competency initiative which

addresses the need for the development of cultural competency

among health care providers and others who participate in health

care processes. There is an urgent need, Mr. Chairman, for such individuals to have a firm grasp on how various belief systems, cultural bias, family structures, historical realities and a host of other

31

culturally determined factors influence the way people experience

illnesses and the way they respond to advice and treatment. We

understand that such differences are real and translate into real

differences in the outcome of care.

We will explore with our advisory council the establishment of

health disparity community centers that will conduct research, provide shared resources and provide the formal infrastructure to facilitate rapid advances in knowledge about communication among

health disparity populations. These interdisciplinary efforts will result in new theories, methods and intervention that will contribute

to addressing and ultimately eliminating disparities in health status.

Finally, Mr. Chairman, the Center is grateful to the Congress,

the administration, the NIH institutes and centers and to all of you

for the overwhelming support that you have provided the Center in

transitioning from the Office of Research on Minority Health to the

National Center on Minority Health and Health Disparities. I’m

proud of the progress that the Center has made over the past year

in establishing its organizational structure and programs. We will

continue to work with our many partners to explore new opportunities to reduce and eliminate health disparities.

Through continued and increasing collaborative ventures, the

Center will work diligently to define the health disparity issue for

every American and garner support to ensure the health of all

Americans.

Health disparity is an issue that transcends minorities and other

health disparity populations. Clearly, it is everybody’s concern and

it calls for shared responsibilities to effect permanent change. Each

year we will be providing an annual report to the Congress on the

result of our activities. We would be pleased, Mr. Chairman, to

keep your subcommittee informed of our progress as well.

Thank you for the opportunity to speak with you today.

[The prepared statement of Mr. Ruffin follows:]

32

33

34

35

36

37

38

39

40

41

42

43

44

45

46

47

Mr. SOUDER. Thank you for your testimony and congratulations

on being the first Director. There will never be another first Director, so it has to be tremendously satisfying; and I appreciate your

leadership.

I have a specific question on HIV/AIDS. It is increasingly becoming more and more dominant in the African American and Hispanic

communities. In fact, other groups have stabilized or dropped, but

the number of black and Hispanic women becoming infected continues to increase each year.

What efforts are you making to address this epidemic, and why

do you feel that the current efforts are failing, because in this area

it’s actually increasing?

Mr. RUFFIN. Well, as you know, Mr. Chairman, there is an office

at the National Institutes of Health which deals specifically—Congress has mandated an office that deals specifically with AIDS research at the National Institutes of Health. And that office collaborates with all of the other centers at the National Institutes of

Health and also collaborates with the new center, that is the Center on Minority Health and Health Disparities.

And also if it’s—we have been able—there is a report, a new report, which I’ve just seen recently, that has come from that particular office that deals specifically with how they plan to address

those specific issues. Clearly, they recognize that this has become

of epidemic proportions within those communities that you just

mentioned. And during a visit to—their Web site, I noticed recently, clearly points out a number of initiatives that go to the core

of your question.

That particular office, as well as the NIH in general, is beginning

to invest and expand funding in research infrastructure at minority

institutions to increase capacity for support for HIV/AIDS research.

We are also increasing a number of funded minority investigators,

because we know that goes to the heart of it as well.

We need to get more minority investigators trained in those

fields. I think that the AIDS loan repayment program is a good

way of doing that, because what we do by supporting those individuals is that we’re saying to professionals around the country that

if you go into AIDS research, what we will then do is that we will

pay back those big loans that individuals have incurred in medical

school, and other health professionals, to deal specifically with that

whole issue. And I think as we begin more and more to train that

cadre of researchers and get the word out, we will begin to address

those issues, and in a major way.

And there are a number of initiatives that are under way, and

particularly in the Office of AIDS Research.

Mr. SOUDER. So let me see if I understand: In your office, would

the loan repayment program be under your office even—and one of

the things your goal would be is to try to address the HIV/AIDS

question in the minority communities?

Mr. RUFFIN. One of the things that happened at the NIH, and

specifically with the creation of the new Center—the AIDS loan repayment program has been at the NIH for some time, but it was

an intramural program. Individuals wishing to study and to come

and do research on AIDS would have to come to the NIH and do

that research in our intramural program. With the creation of the

48

Center, we now have an extramural loan repayment program,

which means that individuals, minorities as well as nonminorities,

throughout the country who are doing research in these fields can

do that research wherever they happen to be.

Whether those individuals are in Wisconsin or anywhere, anywhere else in the country, they can now do research in those various areas. So now we have what is called an extramural loan repayment program that will help us to address those needs.

The program sponsored by the Center also does something else,

it’s not just for MDs. It’s for MDs, Ph.D.s, individuals in dentistry,

osteopathic medicine. Because all of those health professional fields

are going to play a role in our ability to eliminate health disparities. That’s the new aspect that comes with the extramural loan repayment program that did not exist when we had the intramural,

just the intramural loan repayment program at NIH.

Mr. SOUDER. Is there a similar overlap in your outreach programs?

Mr. RUFFIN. Yes. Also I should add to that now—the loan repayment program is a program now that is extended in all of the institutes and centers at NIH. All of the institutes and centers can participate in the loan repayment program at NIH. This is the first

year, of course, that we’ve been able to do that.

Mr. SOUDER. Thank you.

Mr. Cummings.

Mr. CUMMINGS. Thank you very much, Mr. Ruffin, for being with

us.

I want to go back to something that Congressman Davis talked

about in his opening statement, when he was talking about the

medical schools, African American, black medical schools. And it

seems like this would be an ideal place, Howard and Meharry, to

perhaps address these problems and at the same time do something for the students there, do something for the institutions.

It’s my understanding, for example, that the Howard School of

Nursing has a program with Yale.

Mr. RUFFIN. Right.

Mr. CUMMINGS. Apparently, they send 4th year, I guess, students

from Howard to Yale for a month, about a month, a little bit over

a month; and they then get introduced to, I guess it is, high-level

research.

And it sounds like—when I heard you talking about research, I

take it—I mean, is that the kind of thing that you’re talking about

also? I mean, these are nurses that would normally—in talking to

the Dean at Howard, she tells me they would at the end of their

4 years just go on and begin to practice. But it opens up the door

to research.

Mr. RUFFIN. Absolutely. By the way, the funding for that program comes out of the Center. So I’m pleased to take credit for

that.

Mr. CUMMINGS. Wonderful.

Mr. RUFFIN. I must also say to you that partnering between minority and majority institutions is something that is highly encouraged.

49

But I also mention in my testimony the creation of Centers of

Excellence, Health Disparity Centers of Excellence. These centers

would be distrubuted all over the country.

You know, we have other kinds of disparities. As I listened to

Congressman Davis talk about some of the situations in Arkansas,

one of the other kinds of disparities that we have in our country

is, ‘‘geographical disparities as well.’’ So getting these centers located to various places throughout the country, I think, is going to

help.

Many of the historically black colleges and universities will benefit from the creation of these centers because we have devised at

NIH three different mechanisms to level the playing field. All of

our programs are competitive programs, but institutions have to

begin to compete on different levels. So we’ve created three different mechanisms for institutions to compete for these Centers of

Excellence.

One is what NIH calls an R–25 mechanism, which is simply a

planning grant. Institutions which may not be ready for a center

can compete for the planning grant, 3 years, up to $350,000 a year

to plan for their centers.

Other institutions, we have a mechanism which we call a P–20;

those are institutions—essentially an exploratory center. It’s a corporate agreement. We hold hands with those particular centers to

say, NIH is here. We’re going to help you. We are going to be with

you. We’re going to walk until you are ready to go on your own.

Those centers, individuals will compete on those.

Then, of course, throughout the country we have institutions like

Yale and others that we’ve invested in over the years that we want

to also get involved in health disparity research. These are P–60’s,

and those institutions will be able to compete for health disparity

grants as well. And so we are going to make those awards this September.

We have had what we call technical assistance workshops all

around the country over the last few months to tell people how to

compete, before the fact to give them the information and to let

them know what the expectations are. And I know from the interest that we’re going to get a number of institutions around the

country competing for these programs.

Mr. CUMMINGS. I know that you don’t have a crystal ball, but you

are in a position where at some point around 2010 somebody is

going to—a whole lot of people are going to probably say, well, back

then a few years ago a goal was set for us to address these disparities effectively by 2010, and I mean, what do you see happening?

What do you—I mean, what obstacles are in your way from what

you can see? And talk about money and talk about what we can

do as the Congress to help you address these issues.

I just—you know, I couldn’t help but just listen, and listening to

Congressman Davis, I have two relatives, a grandfather and a

grandmother, who I know died prematurely; and I never even got

to know them. And so, you know, we talk about quality of life, we

also talk about the quality of life of having that grandparent there

for that grandchild. Because, you know—and it just—I don’t know

if a lot of people realize how serious this problem is because, going

back to my question, what do—where do you see us in 2010?

50

Mr. RUFFIN. Mr. Cummings, I’m encouraged; and one of the reasons I’m encouraged is for the very thing that’s happening here

today, that is, your ability and the ability of this subcommittee to

listen to those of us who have been out in the communities and

have listened to the individuals who are affected most. At the NIH

and certainly with the creation of the new Center, we’ve tried to

establish a new paradigm. And I think this new paradigm is going

to lead to some results that perhaps we didn’t get in the past and

we will get by 2010.

And that paradigm is this: What we’re trying to do is to do what

you’re doing and that is to listen to the community. I mention in

my statement that we go and we ask the community, what is it—

and they’re the ones after all who know best. We ask them, what

is it that we should be doing that we’re not doing. And when you

give people a chance to talk, they generally tell you what it is that

needs to be done.

What we have to do as professionals is take the recommendations that they give to us, bring it back to an organization, an

agency like the NIH, the premier biomedical research facility in the

world, and try to take those recommendations and convert them to

good science. And that’s what we are trying to do. And think if we

do that, I think the result this time around is going to be different.

And so my perspective, looking through my crystal ball, is very

favorable about what’s going to happen as it relates to health disparities.

Mr. CUMMINGS. Just one last question. What’s the relationship

between NIH training programs that you were describing and

those who—HRSA’s Bureau of Health Professionals that aim to

train minority clinicians; and is it a complementary relationship?

Mr. RUFFIN. HRSA has for some years, as you know, had the

Centers of Excellence program. These are 736 institutions that

were established in public law. They’re not all minority institutions, some of them are research-intensive institutions, but a great

deal of them are minority institutions.

The law that established the center has allowed us the ability to

make loans—I’m sorry, endowments to many of those institutions;

and funds from those endowments can be used for a multiplicity of

purposes. Not all of those 736 institutions would qualify. It is the

institutions among the HRSA Centers of Excellence that are doing

good science, but that have small endowments. And we’re concentrating on those institutions to give them the necessary resources to build a strong biomedical emphasis.

Mr. CUMMINGS. Again, we thank you for—under the circumstances, for being with us. And you know our spirit and our

hearts are with you. And our prayers.

Mr. RUFFIN. Thank you.

Mr. SOUDER. Mr. Davis.

Mr. DAVIS OF ILLINOIS. Thank you very much, Mr. Chairman.

Dr. Ruffin, let me first of all congratulate you on your appointment, and I also would commend the appointing officer for making

what I would think was a very wise selection.

Mr. RUFFIN. Thank you, sir.

51

Mr. DAVIS OF ILLINOIS. Your testimony actually is some of the

most stimulating that I’ve heard in a long time in terms of possibilities for serious movement.

I also want to commend you on the program activity that has already been generated, especially the loan repayment which deals

with a real issue and a real problem that people have.

And then the whole business of trying to train more minority researchers. I can tell you, I’ve participated in so many research

projects where we first had to train the principal investigators

until I just got tired of it; you know, I’m saying this is ridiculous

that these are the people who are in charge, and we’ve got to train

them. And so I’m so pleased to see that.

And also I’m pleased to see that there would be some focus on

trying to engage the historically black colleges and universities

more into the activity. I think that we’ve made a tremendous

amount of progress.

When we had the old health rights programs when we really saw

health in a big way in communities, still many of the people that

we’re talking about are poor. I mean, many of the people with the

greatest amounts of disparity, notwithstanding the fact that there

are some other people that have some too, but poor people. And it

seems to me that poor people require certain kinds of help and

process; and you mentioned outreach, and that’s my question.

When there was a great deal of outreach, I thought we were

making serious progress. But then we killed off that activity prematurely, again, I think when we killed off the old OEO program

and activities.

And how prominent do you see outreach becoming as a part of

the focus of the Center as we deal with the disparity question?

Mr. RUFFIN. It’s a major part. And not only that, but I mentioned

to you that we ask people constantly, what is it that we ought to

be doing that we’re not doing. And this is one of the issues that

come up often. And there are several ways that we’re going to try

and do these kinds of things over time.

One, of course, is, as I said, trying to develop the centers in strategic places around the country. But in addition to that, one of the

other issues that has been raised prominently is the role of community and community-based organizations, all in all, of what we do.

I have to say that at NIH is one of those; that’s one of those

areas where there is a gap, and that is the participation of community-based organizations. We’ve had some activities where community-based organizations have participated with academic institutions in various partnerships. But there, terms of developing a role,

a very significant role, for community-based organizations, I think

that would enhance to a great extent our ability to do effective outreach. And we’re going to continue to develop some programs in

that area as well.

The community is demanding that we develop some programs in

that area. So we have an office in the new Center that is devoted

exclusively to outreach and a relationship with community-based

organizations and trying to address that very issue that you’re

mentioning.

Mr. DAVIS OF ILLINOIS. Let me just thank you very much. Your

words to my ears are like manna from heaven, because I don’t beVerDate 11-MAY-2000 08:55 Jun 17, 2003 Jkt 000000 PO 00000 Frm 00055 Fmt 6633 Sfmt 6633 D:\DOCS\86436.TXT HGOVREF1 PsN: HGOVREF1
52

lieve that you could do a lot of things for people, that you have to

do things with people. And if you get people engaged and involved

and have you them moving in concert, then I think you can see

some progress.

And so, you give me a great deal of hope. And I certainly look

forward to working with you and hope that we can move this process along.

And I thank you very much, Mr. Chairman, and yield back.

Mr. RUFFIN. Thank you, sir, and thank you for allowing me to

testify today.

Mr. SOUDER. Thank you, Dr. Ruffin. You’re free to leave. We appreciate once again that you stayed today.

Mr. SOUDER. Next, we move to the testimony from Dr. Stinson.

Dr. STINSON. Good afternoon. I am Nathan Stinson, the Deputy

Assistant Secretary for Minority Health and the Director of the Office of Minority Health in the Department of Health and Human

Services. I thank you for the opportunity to testify before the subcommittee today.

As has been previously stated, it is very clear that health disparities are not a new occurrence. In fact, the 1983 issue of Health,

United States, which is the annual report card on the health status

of the American people, documented that, although significant

progress had been made in the overall health picture, there still

were persistent and chronic disparities experienced by racial and

ethnic minority populations versus the United States as a whole.

During the final evaluation of Healthy People 2000, where the

experts in the different health fields testified about the progress

made over the past decade, almost without exception they talked

about how the health in general had improved but how disparities

among racial and ethnic minorities had either persisted or in many

cases had gotten worse over the past decade.

This hearing, as Dr. Ruffin said, could not be more timely. There

are many efforts that are occurring not only within the Department

of Health and Human Services but also in State and local communities to address a problem that we know will not go away unless

we give it direct and focused attention.

The Department of Health and Human Services is currently involved in a process of developing a comprehensive overall plan to

address and to marshal the assets that it has in all of the different

agencies to address the disproportionate burden of illness on racial

and ethnic minority populations. The Office of Minority Health, because of its role as the adviser to the Assistant Secretary of Health

and the Secretary in health-related matters as they affect racial

and ethnic minority populations, has the opportunity to play a very

key role in shaping not only the policy aspects on how to address

these problems but also the implementation of any of the particular

programmatic activities within the Department.

I am going to talk very, very quickly about five specific areas as

ways that the Office of Minority Health implements its programs

or influences the Department in its programmatic development and

implementation. The five areas are not in any particular order of

priority, but I want to start out by talking about strategic communication and information dissemination.

53

It is very, very clear that it is important to develop the appropriate health messages, to deliver those messages in a way that individuals are receptive to and, as importantly, to gauge how effective we have been in producing an enhanced knowledge base and

sometimes a change in any particular behavior.

The Office of Minority Health has periodic communications that

it makes available to over 10,000 organizations and individuals. We

have a Web site that is available for organizations and the public

at large, and we have also tried to enhance the capacity of the resource center from a science and research capability to try to provide the opportunity to create a one-stop shopping place for organizations and for individuals who have any interest in the areas of

minority health.

One of the specific and new activities is a partnership that we

have at ABC Radio with their urban network radio stations around

the country where the Department of Health and Human Services

is providing ABC Radio with the medical content and the messages

that they then play on their affiliates around the country at no cost

to the Department, but it is a very important way to reach the population at large.

Clearly, the Department cannot do this by themselves. Partnerships are crucial to addressing the problems of health disparities

around this Nation. We work closely with State departments of

health. Many of them have offices of minority health and have

formed a minority health network where we work very closely with

the efforts that are occurring within individual States and minority

communities.

It is very, very important, as Dr. Ruffin said, that the recommendations, the program development, the implementation are

really based on good science. So the Office of Minority Health, because it has a direct appropriations, is also able to fund some demonstration programs to test some innovative ideas and test out

some different opportunities, outreach to minority communities and

then try to help translate some of the lessons learned and some of

the models that work into the broader categorical programs within

the Department.

One of the last two areas I want to talk about is policy development. Clearly, it is very crucial, as we look at how effective our

programs are in attaining the outcome we are interested in, is that

we make sure that any type of particular policies that we have do

not create any barriers to what happens at the State and local

level, but, more importantly, that we actually have a systematic

way of policy development and implementation that actually enables the actions that are necessary to address health disparities

to occur and, therefore, are very proactive in overcoming any perceived barriers that are there.

Last is the collection of racial and ethnic data. This area is extremely important. It is important that we understand where the

potential problems are, but it is also important in that we have

complete and comprehensive information so that we know whether

or not we are actually producing the outcome we want, we know

whether or not it is time to change what we are doing because the

application of those resources are not going to likely deliver the

output that we are interested in, and that we also know what other

54

areas of disparities are starting to develop in any other particular

group or any other particular condition.

As Dr. Ruffin said, quite directly and very completely, this is a

very unique time that we have to step back and really look at what

is it that we need to do to keep this Nation healthy and strong,

what do we need to do now as we look at the objectives and goals

that we have for Healthy People 2010, what do we need to do now

to assure that the investments that we make as a Nation are going

to give us and allow us to reach that ultimate outcome at the end,

which is a healthier Nation.

Thank you again for the opportunity to testify before the subcommittee.

Mr. SOUDER. Thank you.

[The prepared statement of Dr. Stinson follows:]

55

56

57

58

59

60

61

62

63

64

65

66

67

68

69

70

71

72

73

74

75

76

77

78

Mr. SOUDER. Next we will move to Dr. Ruben King-Shaw, Deputy

Administrator for the Center for Medicare and Medicaid Services.

Mr. KING-SHAW. Mr. Chairman, I thank you for the opportunity

to talk about something for which I have such a long-standing compassion. Such a commitment, as expressed by the secretary and the

President, is quite telling at this important time in health care policy.

Let me first say, for CMS, this is a central issue to who we are

and what we do, as truly the largest health insurance company in

the United States, if not the world. When we embrace the concepts

of eradicating disparities, it has real meaning. We spend $1 out of

every $3 in the health care system nationally, and in many markets we spend 50 percent or more. So our activity in this area has

an implication far beyond the 70 million beneficiaries that we serve

directly through Medicare, Medicaid and SCHIP, but because of

some other things that we do, such as survey and certification and

the market force for provider reimbursement and other types of

standards of care and quality, I would suggest that we have an impact across the entire health care finance and delivery system.

So we approach these issues of health disparity with a heartfelt

understanding that these issues are not minor, these people are not

minor, and our efforts must not be minor. So we do not conceive

of this as a minority health initiative per se. We perceive of this

as efforts to eliminate disparities among ethnic communities. There

are issues of fairness and integrity and equality and I would submit part of the American promise that we make to all Americans

and those that come to this country. So the strategies that we have

pursued at CMS tend to fall into a few areas that are logical and

natural.

First, we have embraced evidence-based medicine and encourage

it in every way. Using clinical practice guidelines and standing orders and performance-based measures is one of the ways we continue to move forward on these important issues. We also focus our

efforts on access and delivery. We do have a very ambitious research agenda. It is highlighted in the testimony. We can talk

about what those initiatives are, but to a very real extent the difference we make is in adjusting the delivery system itself to be

more appropriate in delivering health care to people of ethnic populations who are underserved in the medical community or suffering

from adverse outcomes or by redirecting our resources to improve

access to the existing programs in ways that are successful.

We also are committed to endemic organizational change at

CMS, so we have a program executive who is full-time dedicated

to these efforts, Kevin Nash, who is with me here today.

We have open-door policy forums that allow people from across

the country who care about the issues of diversity and disparity to

be part of our discussion, priority setting and decisionmaking.

We have an Equality Council which sees the addressing of these

disparities as part of its core function.

It is a quality issue as well. Daily decisionmaking must reflect

these priorities as we do our job in all of the ways in which we do

it.

There are several actions that I can highlight. In the interest of

time, I will refer to the testimony.

79

There are some things which I think are important to note. We

do have strong existing partnerships with members of the communities we serve that can enhance our ability through research and

delivery and other initiatives to make a difference. These include

the four historically black colleges of medicine: Howard, Meharry,

Morehouse and Drew.

We also include in our efforts ways to have stronger relationships

with colleges of pharmacy, such as Bayamon, Xavier, Hampton and

also Southern.

We also do a number of things called the Hispanic Agenda for

Action where we partner with leading Hispanic organizations, both

clinical and communities, as we do with Asian American, Pacific Islanders and American Indian populations.

But among the most successful initiatives we have established

has been the notion of embracing demonstration projects to truly

improve the outcome of care for the people we serve. These have

included cancer prevention and treatment demonstrations as authorized by BIPA, a number of clinically and linguistically appropriate initiatives, as well as disease management and case management initiatives that are specifically designed to improve outcomes

in ethnic populations such as HIV, cancer and end stage renal

analysis.

In summary, CMS will continue to do its best efforts in this area,

whether we are talking about demonstration, research, intervention strategies, quality improvement organizations who are dedicated in developing best practices to improve the health outcomes

of all the people we serve, including ethnic populations and racial

groups, that we will continue to do this as a part of our mandate

and our mission for the centers of Medicaid and Medicare services.

I look forward to having more discussion in the question and answer session on this topic.

[The prepared statement of Mr. King-Shaw follows:]

80

81

82

83

84

85

86

87

88

89

90

91

92

Mr. SOUDER. Last we will hear from Dr. Karen Clancy, Associate

Director, Agency for Healthcare Research and Quality.

Dr. CLANCY. Good afternoon. I am Carolyn Clancy, the Acting Director of the Agency for Healthcare Research and Quality, or

AHRQ. I am very happy to be here today to discuss the relationship of the research we support to the issues raised by the Institute

of Medicine report on unequal treatment. Our research provided an

important underpinning for the report and AHRQ is beginning to

respond to the issues raised by that report. I would like to leave

you with a sense of that.

I would like to make two observations. First, to make clear that

we are a research agency but the work that we sponsor actually

complements the work supported by NIH. Where NIH’s biomedical

agenda focuses on what science is needed to address pure prevention and treatment of disease, what treatments can work, our research focuses on effectiveness or what does work for individual patients in typical or real-world practice settings.

In addition, our research, besides focusing on the content of clinical care and the persons with those illnesses—because, after all,

many persons come with two or three different diagnoses—we focus

on how that care is organized, the impact of health insurance, what

sorts of settings people get their care in, and so forth.

The second observation is the issue of poor quality care is most

marked and severe for members of racial and ethnic minority populations, but it is also a problem for all of us. We sponsored a study

that was cited in the report and was published 2 years ago in the

New England Journal of Medicine which asked: What proportion of

Medicare beneficiaries who have had a heart attack are receiving

an evidence-based, life-saving treatment, also known as clot busters, or thrombolysis? What the study found was that 59 percent of

white men, 56 percent of white women, 50 percent of black men

and 44 percent of black women who met the criteria for these drugs

were receiving them.

So it seems to us that there are two important messages. First

and foremost, this study confirms the results of far too many studies showing that African Americans are significantly less likely to

receive evidence-based lifesaving treatments, and it underscores

Dr. King-Shaw’s points about the importance of evidence-based

medicine.

But the second take-home message is that 59 percent of eligible

patients, which is the best that we did, is not so great and that

there is room for quality improvement for all of us. We therefore

believe and it is a point which has been made by Dr. Blend and

others, that reducing and eliminating disparities in health care is

a very critical part of overall strategies to improve quality.

As I noted, many of our studies contributed to the IOM report

Unequal Treatment. One in particular created a lot of attention

and as a practicing physician makes me embarrassed to tell you

about. This was a study that showed that physicians are part of

the problem, not part of the solution. Well-trained actors were

trained to portray patients with chest pain. They used literally the

same wording and language, all of the information provided to the

doctors and interacted with the videotapes of the actors, told them

they had the same income, occupation, and so forth. What the

93

study found was that the physicians were significantly less likely

to recommend evidence-based treatment for older African American

women, and this study prompted a great deal of discussion and

concern.

I would like to tell you a little bit about our efforts to reduce and

eliminate disparities. We have pretty much informed our researchers that we have heard enough descriptive information and, as

IOM study demonstrates, the time to simply describe the problem

any more fully has probably passed. Now we need to focus on understanding why these disparities in health care occur and what

strategies can be used to reduce and eliminate them.

The centerpiece of our research program is called EXCEED, Excellence Centers to Eliminate Ethnic and Racial Disparities in

Health Care. This is a 5-year grant that began in 2000, and it is

a collaborative effort with NIH, specifically Dr. Ruffin, and HRSA,

as well as some other local foundations. Each of these focuses on

four to seven studies organized around a particular problem and

organized around the six priority areas of reducing racial and ethnic disparities in health initiative.

In addition, we have supported nearly 200 grants and contracts

just since 1999 alone.

In response to the Minority Health and Health Disparity Act of

2000, we have also begun this past year to develop a very specific

focus on community-based participatory research. Too often, as

many know, minority communities and other communities believe

that research is something that is done ‘‘to us.’’ The purpose of this

focus on participatory research is to shift that framework so, from

the community’s perspective the understanding is that there will

be nothing ‘‘about us without us.’’ We look forward to reporting on

our future plans to you soon.

We are also supporting some very important training initiatives

to make sure the perspectives of the research community accurately reflect the diversity of the current population.

Importantly, a unique function of AHRQ is to develop the tools

to measure and monitor our progress, to help us make sure that

Mr. Cummings’ crystal ball is as clear as possible. We support the

development of quality measurement tools. In fact, the Minority

Health and Health Disparity Act has asked us to report to Congress on the state of the science for quality measurement for disparity populations; and we will be submitting that to Congress this

year.

Very importantly, our reauthorization in 1999 directs the agency

to produce two annual unprecedented reports starting in fiscal year

2003. One will report on the overall state of the quality of health

care and the other is called the National Health Care Disparities

Report. This will detail prevailing disparities in health care delivery as it relates to racial factors and socioeconomic factors in minority populations.

The two reports are closely linked. The disparities report will report on quality measures presented by race, ethnicity and socioeconomic status. It will also report on consumer and patient assessments of health care quality and quality measures for priority

areas.

94

Mr. Chairman, we are very proud of our tradition of supporting

research to identify and address racial and ethnic inequities and

the outcomes of health care services in this Nation. The findings

of the IOM report are very sobering, but we believe there is a very

important opportunity to establish elimination of disparities as a

priority. Health care is a core component of efforts to improve quality of care for everyone, and our current initiatives are designed to

reinforce and strengthen that opportunity.

Thank you.

Mr. SOUDER. Thank you.

[The prepared statement of Dr. Clancy follows:]

95

96

97

98

99

100

101

102

103

104

105

106

107

108

Mr. SOUDER. I would first like to start with a question for Dr.

Stinson. First, let me double-check, do you agree that married

households generally fare better than nonmarried households in

health care?

Dr. STINSON. Let me answer it this way. There has certainly

been some studies that have speculated that married households

fare better than unmarried households. Most of the research has

surrounded the health outcomes for individuals which are one parent or unmarried households; and they clearly have shown, in

those types of settings, there may be increased behavioral, mental

health problems and higher incidence of substance abuse. Also, unmarried women at any age have a risk of having a child of low

birth weight, which has a whole list of potential health complications.

Much of the research has been done looking at one parent or unmarried households and have looked at a lot of outcomes which

have been troubling. There certainly has been an inference that in

two parent or married households there are some protective natures, because it may indeed create a different type of environment

with certain stabilization around supervision, nurturing, et cetera,

that may have some beneficial effects on health.

Mr. SOUDER. I really appreciate your carefulness in distinctions.

That is my familiarity, is that it is predominantly related to children and studies related to child-bearing mothers. Do you know if

you are just single, no children? Part of the assumption is, if there

are two people there, there is a certain amount of commitment and

responsibility and prodding each other, as my wife particularly

prods me to get things checked out. Do you know much about that?

Dr. STINSON. I am clearly not an expert on those studies. I don’t

know the answer to your question.

Mr. SOUDER. Let me ask, because there actually has been an increase in the percent of marriage and minority individuals. The

bottom line is that we know, freezing insurance and freezing income, there are still disparities. Part of the question is, in freezing

this variable, what would happen? If in fact some of the improvement in relative disparities—is that improvement partly related to

the marriage variable as well? Does anybody have any idea regarding that data?

Dr. CLANCY. Our studies have not specifically looked at this with

regard to race and ethnicity, but there are many studies in the literature which support the contention that being unmarried is not

associated with good health in men in particular. Every time it

comes up at a meeting and someone asks why is that, usually the

researcher steps back and says, ‘‘I am not sure I want to speculate

on why that is.’’ It clearly is a very important factor for men’s

health.

Mr. SOUDER. I was a staffer for Senator Coates for 10 years before I became a Congressman, and I worked with Senator Coates

to try to encourage HHS to have this data in it. It is not clear how

much we can actually affect that behavior pattern or what role it

is of government to affect that behavior pattern, but we ought to

know from a scientific standpoint whether or not marriage is one

of the variables.

109

Let me ask another controversial question, and that is in relations to Hispanics, and this would be very difficult to find, but is

part of the disparity the illegal immigrant question and even an

unwillingness to respond because of fear of the researcher? How

much of the disparity is in that subgroup?

Mr. KING-SHAW. Mr. Chairman, in southern Florida, clearly

when you have a population that arrives in this country that is formally disconnected from the health care system in any way except

the emergency room, then you have all of the problems that are

generated by not having a continuous relationship with the health

care system. Primary care, diagnostic treatment, education, case

management, all those things that would normally be a part of a

connected person to health care would not be in an immigrant population or a migrant population. They tended to have much of the

same characteristics.

There is also the issue that people can arrive in this country not

having achieved strong health status before they arrived. So there

is no connection with the health care system going forward to keep

them healthy, but it can be very difficult to become healthy when

you arrive with a situation which has already put you behind the

eight ball, so to speak.

That is anecdotal. Most people would agree if you are from areas

that are high in the population of immigrant individuals, I am sure

there is some quantifiable data that could bear that out. I just can’t

cite any at this particular time.

Dr. STINSON. Mr. Chairman, your question points out how difficult it is in trying to parse out all of the different factors that play

a role in health disparities. Some of the literature shows in some

of the newly arrived immigrants, some of the individuals from Asia,

some of them actually have better rates in some of the diseases, especially in that population in cancer, than the individuals who stay

here and become U.S. citizens. Over the years, that cohort ends up

developing some of the disparities that we have seen, even though,

when they first arrived, they did not exhibit any differences in the

population in general. It makes it difficult to generalize or to assume that in every situation, every group, that disparity existed

prior to immigration to this Nation.

Mr. SOUDER. I appreciate that. Often, we do not understand the

complexity of it, and the research needs to make sure that we have

all of the variabilities. We all know if you do not have access to a

provider you are certainly going to be less healthy, or if you do not

have knowledge of what is available you are going to be less

healthy. But we are not doing that great with any part of the population, as has been pointed out, and so some are internal variables.

I yield to Mr. Cummings, and hopefully we can finish this panel

before we leave to vote.

Mr. CUMMINGS. Dr. Clancy, I am concerned about the funding for

the EXCEED program and other initiatives with regard to health

disparities. Correct me if I’m wrong, it is my understanding that

the President has asked that your agency budget fall from $300

million to $251 million next year?

Dr. CLANCY. That’s correct.

Mr. CUMMINGS. And I also understand that $192 million of the

$251 million is protected for specific projects; is that correct?

110

Dr. CLANCY. That’s correct.

Mr. CUMMINGS. That means that $49 million must be cut from

the remaining $108 million. Does EXCEED fall into the group of

programs that collectively face that 46 percent cut?

Dr. CLANCY. Yes, it does.

Mr. CUMMINGS. How do you see that affecting EXCEED? It

seems like it is getting ready to be—it apparently is going to be cut

substantially?

Dr. CLANCY. The impact on the Centers for Excellence will be

less than 46 percent because the core funding for some of them

comes from the National Center for Minority Health and Health

Disparities and a little bit from some other foundations. So the net

impact overall across the nine centers I would guess would be

somewhere between 25 and 30 percent cut in the outyears. The majority of funding does come from AHRQ, though.

Mr. CUMMINGS. I know you have to support the President’s budget, but when you consider the fact that literally as we sit here—

and I heard your testimony about how this is a problem that does

affect a lot of people—but as we sit here, people are dying needlessly.

One of the things that was so painful for me to read this, because

I had a relative who had an amputation, part of the report talks

about if you are African American, you have a 3.6 percentage point

times chance of having a lower limb amputated if you have diabetes, same stage. For the life of me, there is something wrong with

this picture. And cutting the EXCEED program—and 25 percent is

a substantial cut in anybody’s estimation—I was just wondering

how do you feel about that? People are literally dying, that is the

other piece. People are dying, and they are dying early. I was just

curious.

Dr. CLANCY. All of the research efforts that you have heard about

from Dr. Ruffin and from myself, and the others on the panel, it

is discouraging that it takes time to buildup a critical mass of researchers to actually establish relationships with communities and

local change agents, who can take the findings from the work and

actually ensure that they are translated into practice and institutionalized.

The timing for the cuts for these centers will be very difficult because they will be at a point where they are beginning to test and

evaluate some potential strategies for reducing or eliminating disparities.

Mr. CUMMINGS. Dr. Stinson, you were talking about the various

programs that you all have to inform people and what have you.

If you read the report, it seems like you can get the information

to the people, but then when they get in the doctor’s office—and a

lot is just getting them to the doctor’s office. At the doctor’s office,

they face another hurdle. I was just wondering, how do you get to

that? Are you following me?

Dr. STINSON. Yes. It is crucial that we do not blame the individual, put all of the burden on the person in that it clearly is important for all of us to understand what we need to do as far as eating

right and exercising, all those things that can help us remain

healthy.

111

But, as importantly, we have to really engage the health professionals in a different way, in a more direct way, in a way that they

understand that the foundation of delivering health care that is of

the highest quality is that they have to communicate effectively

with whoever comes through their door. That means they have to

understand that, just like anybody else, we have to be very objective, be very deliberate and very focused on how do we address the

problems of the patients that come through the door.

The pledge that all health professionals make in delivering the

best quality of care just does not happen naturally. You have to

think about your practice, you have to think about how you can

provide the best care to every patient that comes through your

door.

Mr. CUMMINGS. I agree with that. We have to go to a vote, so

I have to cut you off. I am just saying this as a general statement,

not directed to any particular person.

I wish people in government would look at these problems with

the urgency they would look at them if it was their relative, their

wife or child, that was involved. Then I think people would literally

go crazy trying to solve these problems.

Every human being has value, and I just think that it gets so

frustrating. When I read that report, I felt like vomiting. It was so

alarming to think that so many people are dying. A cut here, a cut

there, it is just a few people. They are going to die, suffer, so what?

Then when I think about the things that we concern ourselves

with, it just seems—the unfairness continues.

I thank you all for being here.

Mr. SOUDER. I thank you as well and certainly encourage the

outreach efforts. I have participated in two minority health fairs in

Fort Wayne, Indiana, where they give free blood pressure and

other screenings. They do them at community-based organizations

or a mall where the people actually go, which is one of the really

important things in the outreach. I think if we continue to all be

aware of these health disparities and work at it, we can all make

progress.

Mr. Waxman also had some questions for this panel, which will

be submitted for the record.

We will temporarily recess, and we have a number of votes, so

we will be a little while.

The hearing stands in recess.

[Recess.]

Mr. SOUDER. Call the subcommittee back to order. And as you’ve

heard our procedure, we need to swear our witnesses in. Congresswoman Christensen does not have to be sworn in. It’s a long-standing protocol but I understand it’s because when we take our oath

of office we already take this oath. So if Dr. Rios and Dr. Cooper

could stand.

[Witnesses sworn.]

Mr. SOUDER. Let the record show that both witnesses responded

in the affirmative. Now, if you can summarize your testimony and

we’ll submit your whole statement in the record, and I’ll be a little

liberal with that. I appreciate how long you had to wait and I appreciate your willingness to stay for this panel and put up with our

voting patterns in the House.

112

With that, Congresswoman Christensen, we’ll let you begin.

STATEMENTS OF HON. DONNA M. CHRISTENSEN, A DELEGATE

IN CONGRESS FROM THE TERRITORY OF THE VIRGIN ISLANDS; DR. THOMAS LAVEIST, ASSOCIATE PROFESSOR,

JOHNS HOPKINS SCHOOL OF PUBLIC HEALTH; DR. LISA

COOPER, ASSOCIATE PROFESSOR, JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE; AND DR. ELENA RIOS, PRESIDENT, NATIONAL HISPANIC MEDICAL ASSOCIATION

Mrs. CHRISTENSEN. Thank you. Good afternoon, Chairman

Souder, Ranking Member Cummings. Thank you for the opportunity to testify at what I feel is a very important hearing.

The IOM report, which is at the center of this hearing, I think

speaks for itself so I am not going to use my allotted time to recount the filings and I will summarize my written testimony.

I particularly appreciate this hearing because this gives us an

opportunity to have this information on an official record. As you

know, we in the Congressional Black and Hispanic as well as the

Asian Pacific Islander Caucuses held a hearing earlier this year on

the report and the Department’s response to the presence of health

disparities. I am going to focus my remarks on issues surrounding

the Department of Health and Human Services.

Let me begin with the issue of diversity within the Department.

We recognize and appreciate the work of Deputy Secretary Claude

Allen and we have a great respect for his knowledge, understanding and his compassion about the health care disparities, but we

do not feel that the Department’s diversity goes deep enough. We

are not convinced, for example, that the Office of Minority Health

and the Office of the Secretary had direct influence on decisionmaking and policy setting across the Department. All of the offices

of minority health must have their own budget, and their functions

need to be institutionalized.

Neither the Office of Minority Health or other programs critical

to the elimination of disparities of health care, including the Agency for Health Care Quality and Research, which carries much of

the mandate to develop policies to eliminate those disparities, have

budgets that are reflective of a serious commitment.

The Center for Minority and Disparity Health Research’s budget

has increased but we don’t see any evidence that convinces us that

center has full trans-authority for all minority and disparity research dollars at NIH or that it has adequate funding to support

critical research infrastructure development or improvement at our

minority health professions schools.

The bottom line is that we are concerned that the Department’s

direction and focus has changed dramatically to one primarily of

cost containment instead of one of providing the resources necessary to promote and restore good health, given that inequities

exist, which if allowed to continue will threaten the very fabric of

our Nation, and major investments must be a made up front immediately to level the playing field or we will never control health

care costs, not to mention save lives, which is really of primary importance.

Let me focus on a few issues, other issues. One of the important

limitations, as you’ve heard, in the effort to eliminate disparities is

113

the lack of data. A study commissioned by the Commonwealth

Fund and done by the Summit Health Institute for Research and

Education found that while the collection of data by race, ethnicity

and language is legal, there is no uniform data collection within

the Department of Health and Human Services. It is critical that

the Secretary direct the Department to collect this data and, if

need be, that Congress so direct the Secretary.

One of the great barriers to appropriate health care is that of

language differences between that of provider and patient. Patients

are caught in between providers who are experiencing cuts that are

driving them to close their offices and the need for the interpreters

on the other hand. CMS must pay for those services, the services

of the interpreter as well as restore the cuts and provider payments.

This leads me to work force development. Much of the gap in

health care for racial, ethnic and linguistic minorities in this country would be closed if we had more providers of the same language

and same background. Yet education and training programs are cut

in the proposed 2003 budget by more than $200 million. This needs

to be restored, with emphasis on training providers of color.

With regard to physicians of color already in practice, the programs of the Center for Medicare and Medicaid Services, their denials, their audits and their cuts in funding are driving an already

marginalized group of practitioners out of business. The managed

care system just makes the situation worse. We need a study to

document what is happening to these physicians and CMS should

require that all managed care organizations and group insurances

provide services in medically underserved and high disparity communities and include the providers of those communities who are

now systematically excluded. Subsidizing malpractice premiums to

the degree that these providers care for patients covered by CMS

also should be considered.

Until the health care landscape is equal for all Americans all

programs should be directed to place emphasis on areas where high

disparities exist for the purposes of increased funding, for placement of National Health Service Corps physicians, and for community health centers, and also within the homeland security bioterrorism initiative. All areas of this country’s public health infrastructure must be strong and intact or no one will be safe.

The need for and the importance of universal coverage to reverse

the inequities in health care cannot be overemphasized. Every year

83,000 people die for the specific reason that they lack insurance.

Three more issues very briefly. A revolution must take place in

strategies for addressing disease in our communities if we are to

begin to see change. The most effective way to improve the health

of our communities is by empowering the communities themselves

through direct funding and technical assistance so that they can be

their own agent of wellness. That is what we in the Congressional

Black Caucus and Hispanic Caucus are attempting to do to the Minority HIV/AIDS Initiative, but under current departmental directives funding that used to be targeted to the community organizations within those communities of color just for this relatively small

but critical program will no longer be so directed. And so we ask

this committee to consider that the devastation of this tragic epiVerDate 11-MAY-2000 08:55 Jun 17, 2003 Jkt 000000 PO 00000 Frm 00117 Fmt 6633 Sfmt 6633 D:\DOCS\86436.TXT HGOVREF1 PsN: HGOVREF1
114

demic in communities of color constitutes a compelling government

interest which meets the test of Adarand.

We further request your assistance in restoring language to appropriately target the funding to build the capacity of the community and faith-based organizations our communities have long

trusted and responded to so that we can bring this epidemic and

all of the other disparities under control.

A central issue is also the need for an effective Office of Civil

Rights within the Department of Health and Human Services. In

addition to a permanent director, this office also needs a significant

funding increase for 2003.

I would like to cite one important case which was the subject of

testimony at our hearing which needs to be addressed. It’s the

Sandoval case in which the U.S. Supreme Court last year held that

private individuals could not sue State agencies under Title IV of

the 1964 Civil Rights Act for unintentional discrimination. Given

the lengths to which they went, it is felt that the decision may signal a bad omen for the future of substantive agency rules condemning disparity impact under Title VI. Reversing the Sandoval decision is a high priority in eliminating racial and ethnic disparities

in health care.

Finally, the health care needs of American citizens in our territories whose Medicaid funding is capped and of the Native American peoples who suffer some of the greatest disparities in several

areas must not be overlooked. This testimony just represents a few

of the important concerns we have concerning the Department’s

policies and operations and the health care system nationwide.

I really welcome and commend the subcommittee’s interest and

concern about this issue that is so vital to the community, communities which make up a significant portion of the population of this

country. African Americans, Native Americans and other people of

color, like all Americans, have the right to good health care but

have long been denied. We are working with the members of this

subcommittee to ensure complete access to all Americans for all

Americans to quality health care. That is the only system that this

country is worthy of.

Thank you.

[The prepared statement of Mrs. Christensen follows:]

115

116

117

118

119

120

121

122

123

Mr. SOUDER. Thank you, Congresswoman Christensen. Maybe

one of the things, you can work with Mr. Cummings and if there

is additional materials from your caucus’ hearing that you want to

see put in this official hearing record, I would be happy to work

with you.

Mrs. CHRISTENSEN. I’d appreciate being able to add for the record

the testimony that we gave to the Labor-HHS Subcommittee of the

Committee on Appropriations as well. I have another hearing to attend that I have to testify at.

Mr. SOUDER. Thank you for taking the time and waiting for so

long for us to get back.

Mrs. CHRISTENSEN. That’s OK. Thank you.

Mr. SOUDER. Let’s see. Dr. Cooper, we’ll go with you next. You’re

associate professor, Johns Hopkins School of Medicine, is that correct?

Dr. COOPER. Mr. Chairman, Mr. Cummings, other honorable

members of this committee, I am Lisa Cooper, M.D., Associate Professor of Medicine and of Health Policy and Management at Johns

Hopkins University. I come before you today as a medical researcher, a primary care physician and a medical educator.

Over the past 10 years with my colleagues I have conducted a

series of studies investigating the issue of racial and ethnic disparities in access and quality of health care services. My work has focused on the role of the Patient-physician relationship in either

perpetuating or ameliorating these disparities in health care.

I am familiar with the IOM report, having contributed to the

study as the author of a chapter on patient-provider communication. I would like to address three of the recommendations made

in the IOM report: First, integrate cross-cultural education into the

training of all current and future health professionals; second, increase the number of individuals from underrepresented minorities

among health professionals; and, third, conduct further research to

identify sources of ongoing racial and ethnic disparities and assess

promising interventions.

First, I strongly support the recommendation that the medical

community integrate cross-cultural education into the training of

all current and future health professionals. The evidence to support

this recommendation comes from several studies showing that ethnic minority patients experience poorer quality technical and interpersonal care from physicians. African, Asian, and Hispanic Americans as well as Native American patients in the common race discordant relationship with their physicians report less involvement

and less partnership in medical decisionmaking, less respect when

receiving health care, lower levels of trust in physicians and lower

levels of satisfaction with care.

My colleagues and I found in a study of over 1800 managed care

enrollees in Maryland, Virginia and the District of Columbia that

ethnic minority patients reported their physicians were less likely

to involve them in medical decisionmaking than white patients. Another recent study showed that white physicians are more likely to

perceive African Americans and lower socioeconomic status patients negatively on several dimensions, including intelligence, the

likelihood of engaging in high risk behavior, likelihood of adhering

124

to medical advice, their ratings of affiliation or liking of these patients, and several personality attributes.

While these perceptions are likely to be unconscious and unintentional, this study and several others mentioned earlier today suggests that the beliefs that physicians hold influence their interpretation of patients’ symptoms, their interpersonal behavior when

interacting with patients and ultimately their clinical decisionmaking. Therefore, it is essential that current and future health

professionals at all levels receive training in intercultural communication. Legislation that mandates the inclusion of such programs

into the curricula of health professional training programs supported by Federal funding such as residency and fellowship training would be particularly useful.

Second, I support the recommendation made by the IOM report

that we increase the number of individuals from underrepresented

racial and ethnic minorities among health professionals. The evidence to support the need for more ethnic minority health professionals comes from several studies showing that African American

and Hispanic American physicians are more likely than their counterparts to provide care for underserved populations.

Additionally, we’ve heard before that racial and ethnic concordance between patients and providers is associated with higher levels of perceived quality of care, participation in care, and receipt

of preventative care and even quality of care for some conditions,

such as HIV.

In the same study I mentioned to you earlier, conducted here in

Maryland, Virginia and the District of Columbia, we found that patients who were seeing a race concordant physician felt more involved in decisionmaking. The active participation by patients in

medical decisionmaking with physicians is an important marker of

the quality of interpersonal care because it has been related to satisfaction, longevity of the patient-provider relationship, and better

health outcomes such as diabetes and hypertension control.

The goal of increasing ethnic minority health care professionals

is to provide patients with more choices and access to a more diverse group of health professionals. I recommend—ask that you

strongly consider supporting the continuation of policies in Federal

funding to promote the training of health professionals from underrepresented minorities at all levels, including the provision of loan

repayment mechanisms for physicians who provide care and conduct research to care for underserved populations.

Finally, I strongly support the recommendation that the scientific

community conduct additional research to identify sources of racial

and ethnic disparities and to assess promising intervention strategies. Resources from the NIH and the AHRQ have allowed medical

researchers to identify and explain sources of disparity and most

recently to design and evaluate interventions to eliminate these

disparities. These two agencies have provided the majority of funding for the studies conducted over the past two decades in this

field. More well-designed interventions with rigorous evaluation

are needed. As such, the AHRQ and the NIH will need a higher

level of resources to assure that the research necessary to inform

health policy as well as clinical practice is done in the most effecVerDate 11-MAY-2000 08:55 Jun 17, 2003 Jkt 000000 PO 00000 Frm 00128 Fmt 6633 Sfmt 6633 D:\DOCS\86436.TXT HGOVREF1 PsN: HGOVREF1
125

tive manner and that future researchers in the field of disparities

receive appropriate research training.

Finally, because access to high quality health care is an important determinant of health status, this research will likely play a

pivotal role in improving the health status of the entire American

public.

Thank you.

[The prepared statement of Dr. Cooper follows:]

126

127

128

129

130

131

132

Mr. SOUDER. Thank you very much. Dr. Cooper, who is Associate

Professor—no. Dr. Rios, excuse me, I am misreading here. You’re

President of the National Hispanic Medical Association. Is that correct?

Dr. RIOS. Yes.

Mr. SOUDER. Are you a practicing physician or the Executive Director?

Dr. RIOS. Executive Director.

Mr. SOUDER. Thank you. Is your mic on?

Dr. RIOS. Is it on?

Chairman Souder, Congressman, HHS officials and guests, it is

an honor to be here. The National Hispanic Medical Association

represents licensed Hispanic physicians in the United States. The

mission of NHMA is to improve the health of Hispanics.

I also work as the CEO for the Hispanic-Serving Health Professions Schools, Inc., that represents 22 medical schools and three

public health schools. The mission of this organization is to develop

Hispanic students and faculty and research capacity to improve

Hispanic health. And I would just like to say that I think I have

to agree with the Congresswoman when she said we really do need

universal access and that would be—I think that would go a long

way to eliminate disparities in this country if we had access to

health care.

The Hispanic population right now is 14 percent of the U.S. population. By the year 2050 one out of every four Americans will be

of Hispanic origin. We are the ethnic group in the country with the

largest rates of uninsured. I know that the IOM report, however,

discusses disparity not due to access related factors so I won’t discuss insurance. But in the case of Hispanic patients we are challenged by language needs, literacy levels, lower levels of poverty

and education, citizenship status, cultural beliefs and attitudes,

family group decisionmaking, awareness of public health programs,

or lack of awareness I should say, lack of awareness of how to even

follow complex treatment regimens, how to read drug labels, where

to go for further testing, x-rays or speciality care in our complicated

health system.

Our health system is the best in the world, but in order to be

proud of that system this report challenges all of us to develop new

strategies to improve the quality of health care delivery. And we

like to address just some proposed strategies for HHS to continue

to decrease rates in ethnic disparities in health care. And the first

area, as has been mentioned, is diversity in medicine.

The U.S. Federal Government has taken the lead to recruit and

retain minority and disadvantaged health professional students

since the 1960’s, when it was recognized that it is a Federal Government role to develop programs that provide health care services

for all vulnerable population groups in this country. Medicare for

the elderly and disabled, Medicaid and community clinics for poor

patients, and the National Health Service Corps and the Health

Careers Opportunity Program for poor, disadvantaged or minority

students so that they could become health professionals for their

communities.

In the 1980’s, HHS further developed these programs by addressing the—by calling—by creating the Centers of Excellence and the

133

Faculty Development Program for minority students at medical

schools. Through its curricular efforts, the COEs impact cultural

competencies of all their graduates. In addition, both of these programs have increased the number of minority faculty, although

small, but they have increased the number of minority faculty that

address research and curricular issues related to minority patients

and communities.

The literature demonstrates many examples of studies on the

outcomes of minority health professionals serving a major need in

the United States, mainly that they provide health and mental

health care services for minority patients of their own ethnicity and

for those on Medicaid and the uninsured. And there’s definitely an

economic impact by having minority health professionals in this

country.

HHS HRSA’s Health Careers Opportunity Program and Centers

of Excellence Program have proven track records of graduating two

to three times more disadvantaged and minority students than the

other health professions institutions in this country. However, for

the second year in a row this administration has called for drastic

down-sizing of these programs.

We believe strongly that the IOM is a reminder for us with the

changing demographics and continued immigration of Hispanics

and the needs of all minority groups to recognize the critical need

for minority physicians, and currently Hispanics are only 5 percent

of America’s doctors and only 2 percent of America’s nurses, and

both of these programs should be expanded with increased funding

at the level requested by Congresswoman Donna Christensen at

her testimony to the appropriations hearing.

We also propose a new strategy that these programs be expanded

into public-private partnerships with the medical schools, led by

HRSA. The medical schools have institutionalized recruitment and

retention programs. They have minority affairs offices. They have

staff. But they should be required to provide more matching funds

and fund-raising efforts to increase the support for these programs.

We support the request from the caucuses again to increase the

support from the Federal Government, also. And why shouldn’t a

recruitment program be linked to academic enrichment in middle

schools and grammar schools and colleges through scholarship incentive programs, for example, that could be privatized? Scholarships could be linked to the students who would be linked to programs developed at certain schools and regional consortia. Why

shouldn’t businesses, especially the HMOs, hospitals, pharmaceutical companies, medical suppliers and medical groups that are

employers and business partners who directly benefit from their

linkages with physicians be fiscal partners in the education process

of future physicians?

We also recommend that there should be collection of data of

the—about the alumni from these programs and link their location

of practice to medically underserved areas or health professional

shortage areas, as does the community clinic and the National

Health Service Corps program.

Furthermore, Medicare GME funding for teaching hospitals

should be linked with the policy focus to provide incentives to

produce minority physicians and minority programming. There

134

should be loan repayment for faculty, and I think that physicians

should be encouraged to sign up for the National Health Service

Corps more than we are now in terms of minority physicians.

President Bush’s Medical Reserve Corps is another example of an

effort where we could get more volunteers to work through that effort to help recruit younger students in doctor’s communities.

Cross-cultural education was mentioned by my colleague. I won’t

go through that, just to say that it is very important because we

have so few minority doctors in this country that the majority of

doctors need to have cultural competency training in medical

schools, and in fact the accreditation body for medical schools in

this country just mandated that cross-cultural education be a requirement for medical schools so that the future generation of doctors in this country can better know how to communicate and understand and respect their patients.

We also recommend the funding for HRSA for the Cultural Competence Curriculum Demonstration Grants that were part of the

Health Care Fairness Act that created the new national Center for

Minority Health and Health Disparities Committee. They were

never funded.

Also, the Agency for Health Care Research and Quality and the

Centers for Medicare and Medicaid services should also include cultural competence training not only of the health providers, the doctors, but the health staff, the programs that they support.

Third thing is language services, and I think that it’s just important to realize that there are so many people that speak other languages in this country and they do need and deserve to have access

to the health care system and they do deserve to be able to communicate with their providers. I think that we understand the importance especially of Spanish speakers in this country, the increasing

number of Spanish speakers and that we do know that the White

House Office of Management and Budget just concluded its study

on the implementation of the Limited English Proficiency Executive Order and said that the benefits seem to outweigh the costs

since language services improve access to and can increase effectiveness and distribution of public health programs.

Moreover, language services will substantially improve the

health and quality of life of LEP individuals and their families. We

propose that HHS support demonstration programs in language

services to develop the reimbursement models needed through programs that exist right now at HRSA, the community clinics at

SAMHSA, the drug treatment centers, the centers for Medicare

and Medicaid services through Medicare and Medicaid.

Interpreter services should be developed not only for bilingual

staff and bilingual providers but for consultant interpreters. That

should be developed as new auxiliary health positions with certification and training programs, and Spanish language training for

providers through CME programs and for medical students should

be supported significantly in targeted markets through demonstration projects.

There really is a critical need to do this now to prepare for even

more Spanish speakers in the future in this country.

I also think there could be a new program for managed care partnerships in targeted States that could be used as incentives to get

135

Medicare programs to expand services to the Hispanic elderly. All

of HHS prevention literature needs to be in different languages

and media. Both English and Spanish TV, radio, Internet and print

needs to be partnered by HHS to start developing targeted public

health messages.

Now just a couple of systemic strategies that this report leads us

to think about. The Hispanic-serving health profession schools has

a project with the CDC to develop its faculty data bases. There has

never been an attempt to identify doctors in this country who are

involved in minority research, and I would imagine that historically black colleges and universities have done a great job in knowing that about their own faculty but I think that for the Hispanic

community in this country this is the first time that we are attempting to identify resources, our human capital resources among

our own faculty to do research on Hispanic health.

The National Hispanic Medical Association has developed a leadership program for doctors, and this is another area that this report leads us to believe that HHS needs to start thinking about

supporting leadership, not only within its ranks but the leadership

of minority communities so that they understand how to access or

how to improve access programs, outreach programs, enrollment

programs and that we have middle managers as well as physicians

learn how to work hand in hand with the government at the Federal and State level in matters of leadership development.

We also have for future data collection and research, and this is

the last set of recommendations, there is a real need for collaboration among the research agencies at HHS on the importance of minority research, cultural competence research, and I think, as was

stated earlier, especially community-based research where we include the community in helping to design and develop new strategies and interventions and study those hand in hand with researchers and academic institutions. I think Dr. Ruffin mentioned

earlier about that cultural competence research in the future and

Dr. Clancy talked about the EXCEED programs, and these are examples of programs that are very much needed to be expanded for

research.

The National Hispanic Medical Association has established a

foundation, the National Hispanic Health Foundation, and we soon

will be developing plans to do health services research targeted for

Hispanic, understanding Hispanic community issues. We will be

working with the New York University’s Wagner Graduate School

of Public Service, and we look forward to helping to develop more

knowledge about the Hispanic community, and I think that’s one

of the wakeup calls of this report is that we don’t know enough

about interventions and strategies. We know that there’s a huge,

huge problem and it’s ironic that on the verge of a huge demographic change in this country where everybody is going to realize

that minority health is important and that main stream America

has recognized that minority health is important we need to do

something about it and we’re here to help. So we’re here to help

with again reaching out to our communities and being a link to get

more information and more leaders for the government.

[The prepared statement of Dr. Rios follows:]

136

137

138

139

140

141

142

143

144

Mr. SOUDER. Thank you for your testimony. We’ve been joined by

Dr. Thomas LaVeist. I need to swear you in. If you’ll stand. The

subcommittee as an oversight committee requires it.

[Witness sworn.]

Mr. SOUDER. Let the record show that the witness responded in

the affirmative. Thank you for joining us and we’ll let you have 5

minutes for your testimony and we’ll insert anything you don’t get

covered into the record or any additional materials.

Mr. LAVEIST. Thank you. I beg your forgiveness for returning

late from recess.

Mr. Chairman, honorable members, thank you for inviting me to

participate in this important hearing. The recently released Institute of Medicine’s report on racial disparities and health care summarizes decades of research that has not always received the attention that it deserved.

I have devoted my career to further understanding the issues of

racial disparities in health, and I am pleased by the response that

has come from this report. I am encouraged that later this year

Johns Hopkins University along with Morgan State University will

announce the creation of the Center for Health Disparities Studies,

and the goal of that center will be to bring together—bring to bear

the resources of both institutions to address this very important

problem.

According to the Census Bureau, in the coming decades American racial and ethnic minorities will be an increasing proportion

of the national population and eventually become a majority. As

such, the health profile of the country will increasingly become reflective of its minority population. The United States already has

a surprisingly low international standing with regard to health status. We are already No. 17 in female life expectancy and No. 26

in the world in infant mortality. This is only one spot above Cuba.

Without a reduction in and elimination of health disparities our

international standing in terms of health will most likely be even

lower in the coming decades. This will have an important negative

economic impact as well in terms of lost wages and productivity

due to disability. And the impact on the Federal and State budgets

is predictable, increasing Medicare and Medicaid costs, and we

can’t ignore the impact that increasing health care costs will have

on the private sector.

While the IOM report is important, this is not the first published

report documenting disparities and even discrimination in health

care. This is not even the first such report written by the IOM. So

why am I so hopeful that this time the issue will not again lose

momentum and exit the national agenda? The reason for my optimism is that I believe there is the potential to establish a national

infrastructure to address race disparities in health. Creation of the

National Center for Minority Health and Health Disparities is

among the most important improvements to our Nation’s health

care infrastructure in decades.

As one who has been conducting research on minority health and

health disparities for many years, I want to take this opportunity

to thank Congress for its leadership in creating this center. This

new entity will play a central role in ensuring that the issue of minority health and ill health remain on the national agenda. But we

145

must not stop there. American public health and medical researchers have sustained a steady march toward the furtherance of our

understanding of the causes of premature death, ill health and preventable disability. But while we have been leaders in furthering

knowledge and health status and curing disease, we have been less

attentive and some might even say accepting of pervasive disparities in health.

Why is it that American minorities live sicker and die younger?

Certainly the answer is complex and elusive, but there are a few

things that we do know. We know that it is unlikely that the answer lies in biology and is exceedingly unlikely that a solution will

come from genomics. Likewise, programs such as Take a Loved

One to the Doctor Day, which was recently proposed by the Secretary of Health and Human Services, misses the mark and will

have little efficacy. Increasing the number of minority health care

providers is needed, but this alone will not solve the problem.

The weight of the evidence I believe indicates that the causes of

persistent and pervasive racial disparities in health lie in the actions and inactions of individuals and the inequitable outcomes

within health care organizations and health systems. Health care

lags behind other government-regulated industries in that health

care has not addressed racial discrimination since the desegregation of hospitals. Housing, labor, education, criminal justice, these

areas all have ongoing systems in place to monitor, measure and

sanction documented discrimination. In contrast, there are many

hospitals that do not even collect data on patients’ race.

Why? Well, my contribution to the IOM report was to outline the

basic parameters of the development of a civil rights monitoring

program in health care. Monitoring systems are not unprecedented

in health care. There are existing monitoring programs for health

care quality, patient satisfaction, and there are report cards on

health systems. A health care discrimination monitoring and enforcement system similar to efforts in housing will not likely be the

solution to disparities in health care, nor will it solve all health access problems. However, such a system will help us to move toward

equity in health care equality and likely reduce disparities in

health care outcomes and improve health status.

Thank you.

[The prepared statement of Dr. LaVeist follows:]

146

147

148

149

Mr. SOUDER. I want to thank each of the witnesses once again

for your patience. This has been a long afternoon for your testimony, and working with it, I would strongly encourage each of you

as you work with this and as you work with the agencies and with

Congress to make sure—I don’t think any of us would deny regardless what political party, maybe some are less inclined, that discrimination in fact occurs. But in order to address it we need to

know where it is discrimination based on race or ethnic backgrounds and where it’s discrimination based on income, cultural,

education, language, and to make sure that where possible, it may

include marriage differentials, in trying to figure out how best to

address where the root problems are in the differentials we have

to make sure we have the right mix of scientific data.

One thing is that you have to collect it. I think that there are

several other things that I want to make sure that I put in the

record. I know one of the problems with medical coverage in a lot

of our urban areas has to do with the medical malpractice insurance. And we have to address that question because the cost disparity in those places for a physician to come in is huge, that over

the years—I mean there are just tremendously underserved and

that’s one of the cost pressures of any doctor looking at coming in.

We need to be fair to the patients and at the same time not have

that be a distraction.

I think another kind of fundamental thing that I’ve seen in the

emergency rooms, in particular, is the bill collection process, where

the hospital collects different from the doctor, which collects different from the other testing procedures, is chaotic no matter what

your background is. If you’re trying to manage a limited amount

of income to try to figure that out and think you paid the bill then

another bill comes, just at a gut level having gone through different

things in the emergency room and talking to different individuals,

this is a much bigger problem than is acknowledged because the

bill collection percentage is really low in some areas. And it’s why

hospitals financially are moving more toward suburban markets

and they find a financial disincentive in some of the doctors. We

have to figure out where those gaps are in the system and how to

address those gaps, because if we aren’t reflecting what is actually

occurring at the grass roots level it becomes very difficult even

while we may be able to force someone by saying, which I support,

if you’re going to get a student loan you will underwrite a certain

portion to go to a low income-served area. The second they fill their

requirement in 3 years they’re gone. If we can’t make it so they can

figure out how to survive long term, we need to address those questions.

I have a couple of specific questions for Dr. Cooper and then if

any of you want to comment on the remarks that I made. I thought

it was interesting and logical that primary care patients in race

concordant relationships rated their physicians as being more

participatory than those in race discordant. Were the statistics at

a level enough to be statistically reliable?

Dr. COOPER. Definitely they were. In fact, in the study that I

mentioned that took place in this area in Maryland, Virginia and

the District of Columbia the differences between patients and race

concordant and discordant relationships were of a magnitude such

150

that they predicted at least a 10 percent increased likelihood that

a patient would disenroll from the physician’s practice over 1 year.

So it was statistically significant, but also likely to be clinically significant as well.

Mr. SOUDER. Is that true in African American, Hispanic, Asian

and all groups?

Dr. COOPER. That was in all groups that we looked at.

Mr. SOUDER. Are you able or were you able to in any way separate that statistic to see how much of it was language and how

much of it was—in other words, let me give you an example in veterans hospitals. Veterans prefer to go in many cases to a veterans

hospital because they perceive that they’re treated differently, different respect and some of them are what I would call maybe psychological variables which are still real. Others are actual barriers

because of language questions.

Dr. COOPER. We actually did not ask about language. You know,

all of these patients were proficient enough in English to respond

to the survey. So it would suggest that these people were not people who were experiencing extreme language difficulty. There’s

been other work that shows that minority patients will say that

they prefer a physician of their same race or ethnic group and that

will occur aside from language similarity, that language concordance is something that contributes to that, but not totally.

Mr. SOUDER. Do you find, and I know this an explosive question,

I’m just asking to see whether the data reflected this—is this predominantly an anglo ethnic or would this apply to a Hispanic group

with a Hispanic—with a black doctor, an Asian group with a Hispanic doctor?

Dr. COOPER. Right. We actually looked at physicians of different

races to see where the stronger effect was, and we found that within each race group the physicians who were seeing patients of their

same race were rated more highly with the exception of Hispanic

physicians, where we didn’t achieve statistical significance but we

had a much smaller number of Hispanic physicians in the sample.

So it seems it’s not a finding that is limited to one specific ethnic

group, but that all ethnic groups, patients of all ethnic groups will

express this increased satisfaction or partnership when there’s a

similar race physician, which leads us to believe that there’s something about the relationship and the rapport that may have something to do with cultural similarities or similar social experiences,

something else that we haven’t quite captured, some trust between

people that is based on, you know, just comfort level and expectations of being understood and treated well.

So what we’d like to do is see what we can learn from this. We

think it suggests that we need more diversity among health professionals, but it also suggests that maybe there’s something we can

learn from these same-race relationships. Is there something that

goes on in those relationships that we can use to teach other people

so that when they’re relating cross-culturally and interculturally

that they can emulate those same behaviors and attitudes.

Mr. SOUDER. It’s really an important point because I think while

we’ll try to continue and we need to continue to try to recruit more

minority people into the health care, the truth is particularly when

you get into a mid-sized city as opposed to large city the base of

151

the sub-communities are not big enough with which to sustain all

the diversity. For example, in Ft. Wayne, which is 200,000, 300 in

the metro area, in the south side of Ft. Wayne in the community

health center, which has historically been African American—I

think it’s now down to about 25 percent, maybe 40 percent Hispanic, another 15 percent Burmese and another 5 to 10 percent

Bosnian with hardly any Anglo in it, and yet it’s not big enough

to sustain a doctor in each one of those subgroups and a nurse in

each of those subgroups. So we have to figure out how to crosstrain because even if we expand it it’s not clear that a minority

person who is in that area will be of the minority, particularly

since neighborhoods shift. One of the areas that for some reason we

have whole lot of Bosnians who came into my area and we have

the largest Burmese population in the United States. It was 400,

now there’s over 2000. So when they move that a neighborhood it

changed substantially who would be providing the health care to

them. And they don’t—many of them don’t speak that much

English. And it is—we’ve never had a Burmese population before,

so it’s kind of a new phenomena that the whole community is working through. The Mexican immigration is easier and Central and

South American immigration because we’re dealing with languages

but in some of my school districts they have 22 languages in rural

Indiana. So you know that this problem is becoming increasingly

challenging all over the country.

Dr. COOPER. I think what we’re trying to do is to learn exactly

what cultural competence is. What does that mean? And are there

some generic skills that the students and health professionals need

to have in order to interact effectively regardless of who they’re

interacting with, you know. Because—and I think we cannot over

simplify the fact that a person is from the same race or ethnic

group doesn’t mean that they’re necessarily going to hold all the

same beliefs and values as well. So I think we’re trying to understand more from our research what this cultural competence phenomenon is so that we can actually teach it in a more effective

way. And we need to teach it and also to evaluate how our teaching

is impacting on care and our outcomes.

Mr. SOUDER. Mr. Cummings.

Mr. CUMMINGS. Dr. LaVeist, do you—how much faith do you

have in this National Center for Minority Health?

Mr. LAVEIST. I do think it’s very important. I do have faith in

it, because what that center does is tries to cut across the various

institutions at NIH. NIH is set up in a disease specific way. But

the issue of race disparity is not disease specific, it’s not so much

cancer or heart disease or stroke, it’s all that. I think a center that

cuts across the various health outcome mandates of those institutes

I think is the right configuration. My faith is I guess entrusted in—

my faith is operating under the assumption that it will continue to

be funded at an appropriate level and as such be able to do things

like develop these research centers and fund these centers appropriately so that these centers can continue to do the kind of research that needs to be done.

Mr. CUMMINGS. You were here a little bit earlier and you heard

the testimony of how certain things were being cut back with regard to the——

152

Mr. LAVEIST. HRQ.

Mr. CUMMINGS. Yeah. And how that seems to fly in the face of

all the things that we’re talking about here today. Did you have a

comment on that, Dr. Rios, on what I just said?

Dr. RIOS. Oh, sure. I couldn’t agree with you more. I think it is

a time, a very difficult time right now when the Federal Government is committed to healthy people 2010, which is still another

8, 9 years away. We’ve got all the States involved with trying to

focus in on collecting race data now, collecting subgroup data for

Hispanics. Now we have a new census, a 2000 census, that shows

us that we’ve got markets in different countries, as the chairman

alluded to, markets where we haven’t seen minority populations

live. We have a health care awareness of the need for language and

culture to make a quality health care. And in spite of that, the

funding for I think what is very important, research and preparing

for the future, is being targeted for major cuts. And the health professions too, I have to throw that in. I think that we need to think

about how to have a cross-cutting approach to HHS when we talk

about disparities. And there are things that do work.

There are programs that are working that have proven successful

for increasing minority health. Only nobody’s ever looked at them

together. The National Health Service Corps that you mentioned,

there should be a more targeted approach to people that come from

certain communities to—and I’m from California, and in California

there’s a State-based, a State Health Service Corps Program, So

that the doctors would pay back their student loans but stay in the

same State. And there was more of a chance at that time doctors

would go working in community clinics and certain communities

and staying in those States because they’re from the area.

Mr. CUMMINGS. Dr. Cooper, when you—you know, I was talking

about this study on the radio in Baltimore, and I was trying to figure out what the listening audience could do themselves because

the report sounded so bleak. And when I look at the funding situation, I mean I’m trying to figure out what do you say to a patient

or people who—because there are a lot of people who are sick and

don’t even know it. And I mean, do you tell them to go and get—

I’m not trying to take the weight off the government because we’re

supposed to do what we’re supposed to do, but in the meantime

what do you say to a patient. If you had a patient that had read

this report and understood it, and the patient says, well, what advice do you have for me and for my family, I mean, because according to the report you got insurance, I mean apparently you know

how to get to a doctor, these people, and I’m talking about as far

as the study is concerned, I mean what do you say to them? They

can’t just go up to say, look, are you a racist or what? So what do

you say? What would you as a doctor say?

Dr. COOPER. I think what I try to say to my patients is, well,

first of all, I try to ascertain from them what their level of interest

is in advocating for their own health and try to encourage them to

become more active in this, engaging in more healthy life-style

changes and in healthy behaviors. But I also encourage them to become more involved in learning about health and encourage them

to ask questions when they don’t understand. I think this is part

of what we’re talking about when we say improving intercultural

153

communication. We’re talking about cultural sensitivity and reducing stereotyping behavior and bias, but we’re also talking about

just using good communication skills, which will allow people to express what their concerns are. So just asking people what’s your

understanding of what’s wrong with you and trying to assess where

they are with that and can you tell me why you think you have

kidney failure and what do you think would help in this situation.

And so trying to understand what people’s own understanding of

their illness is and what they think would work for them and then

working with them based on their own social and family situation,

but trying to get them really engaged in the process, because we

know that’s the only thing that’s going to allow people to make

changes in their behavior.

Mr. CUMMINGS. Do you say to the person, the African American

person who this report says has the 3.6 times chance of having an

amputation if he’s got diabetes—I mean what do you say to that

person when they come to you and say, Doc, I read this report, and

it’s a lady, and she says I love my legs but now they’re saying I’ve

got it? And this is very real.

Dr. COOPER. I am concerned about the impact of this report on

the doctor-patient relationship. I think it’s very important that

we’re looking at these problems, but I also am concerned that the

way that the message is portrayed is not such that it causes more

distrust between patients and providers. I think what I would say

to people is that you know, I think the majority of health professionals don’t go into this field so that they can discriminate against

people, that a lot of these people are well-meaning people that have

good intentions, and what it is is that people are just not aware

of their own biases. And so although I believe the burden of responsibility is on health professionals first and foremost, I think that

patients can play a role if they’re more informed about what is

going on and they know what is appropriate for them. So if they

can get information, ask for someone who is an educator or case

manager to explain to them what should I be getting if I’m a diabetic patient, what kind of treatment should I be receiving that I’m

not receiving, you know. Am I on the right medication that I should

be on? Am I on the right dose? What should I be asking my doctor

to help me do so that I don’t end up with an amputation? And letting them know that they do have a right to ask those questions

and to request, you know, certain things.

Mr. CUMMINGS. But tomorrow my leg is going to be amputated.

My leg is going to be amputated, Doctor, and I know that as a

black person I have a four times, almost four times greater chance.

I mean that’s the rest of their life you’re talking about, quality of

life you’re talking about, you know, having to go around this a

wheelchair. See, and that’s what make the report so—and I agree

with you. I’m concerned about the other end of it, too. But when

these people call me and say what are we supposed to do, you

know, that kind of stuff is just so wrenching. I think government

has to, we’ve got to do more. We’ve got to find ways—I’ve often

said, and I’m sure the chairman agrees with me, we’ve got to spend

the people’s tax dollars effectively and efficiently but we’ve got to

find ways in that mode of effective and efficiency, we’ve got to find

154

ways to try to prevent some of the catastrophes that this report

says are happening every minute of almost every day.

Dr. COOPER. And I think it’s going to have to take place on several levels, you know, like the chairman mentioned. Financial incentives for providers need to be changed. I think from the patient

perspective, doing everything they can, having them know that

they do have a right to question what’s being done to them and

that they can request a second opinion, they can bring in a family

member, or they can call someone else who they know who might

be more familiar with the health care system and ask their opinion

as well, that they’re entitled to that. I think if there’s anything we

can do it is to educate the public that this is a problem and that

you do have a right to question this and to ask for the best quality

health care because it’s available here in America. It is here and

it’s a question of actually advocating more actively for it whenever

possible.

So, but again I feel like that we can educate and activate people

up to a point, but really the burden is on the system and on the

professionals to take the lead in that role.

Mr. CUMMINGS. Finally, there were three things that you all

would want us to do, Dr. Rios. What would those three things be?

I mean top priority. If the Congress said there are three things

that we’re going to do, we may not be able to do all this other stuff

that is recommended, but the things that come under our purview,

what would be the three top things off the top that you would want

to see us do?

Dr. RIOS. No. 1 is universal access. I think if we can have public

education, and this system may not be the best, public schools in

certain cities, depending on the teachers and the curriculum, but

we certainly have an opportunity for education. And in this country

we don’t have an opportunity for health care. That’s part of the big

problem for disadvantaged and immigrants and Hispanics and

other minorities. That’s No. 1.

No. 2 I think is more research that’s community based and targeted approaches and intervention so you can measure and understand with a small study what works, what doesn’t work. The interpreter services, right now the Robert Wood Johnson Foundation

just started the new project of La Muz Huntos to do that. They’re

looking at cities where it’s an emerging problem to understand how

to work with doctors that have never worked with Spanish speaking patients before.

So I think I know we need community based research, targeted,

demonstration models, with minority consumers and minority providers working with the government. And the third thing is we

need the minority doctors, because what we don’t have is the minority physicians to document the cultural competence and the best

practices. For years we’ve had doctors working in small mom and

pop private clinics, private offices. I am from the East L.A. area,

they’re still there, volume cash paying patients. It’s a whole underground market. There’s no licensing from—I mean there’s no data

collection from the State because the State only collects from licensed clinic, licensed hospitals, licensed nursing homes. These are

private businesses. Managed care doesn’t touch the underground

that exists in our minority communities. Doctors provide care beVerDate 11-MAY-2000 08:55 Jun 17, 2003 Jkt 000000 PO 00000 Frm 00158 Fmt 6633 Sfmt 6633 D:\DOCS\86436.TXT HGOVREF1 PsN: HGOVREF1
155

cause there’s a demand. But there’s no documentation of what are

the best practices and how those doctors do get those patients, and

generations after generations of families after families coming back

to the same doctors. And that’s the quality care that we need to

understand and meld with our academic health centers, where a lot

of minority patients go there, you know, because there’s training

going on of young residents.

Mr. CUMMINGS. Thank you very much.

Mr. SOUDER. I want to thank you all for participating and thank

Mr. Cummings for seeking this hearing and working with us. I

found it very informative, and one of the primary reasons we did

this is we know we’re never going to fully fix our health care system and people are always going to complain and the hopes and

dreams of a perfect health care system outstrip our ability to pay

for it and the new inventions of everything from drugs to facilities

that are unimaginable at this point. We don’t even know what’s

going to be invented tomorrow, and our expectations and the reality of it need to be addressed.

We also know we have huge immigration questions in this country, that we’ve always had them, but right now they’re of particular

attention and we have to work that through, which is a subpart of

what you’re doing.

I felt this hearing was also especially important because whether

or not we get more than 59 percent happy with the health care system may or may not be achievable long term, but what we do know

is there shouldn’t be a 20 percent disparity. And even in those statistics, 59 to 50 and 40 something to 40, between African American

and non-African American, for example, is not right. And even if

the gap is closing we need to be concentrating on whatever satisfaction level we can get as a society. The gaps inside it should be

minimal, and that’s ultimately one of the goals of Congress. And

we appreciate your help with that and Mr. Cummings’ leadership.

With that, our hearing stands adjourned.

[Whereupon, at 3:40 p.m., the subcommittee was adjourned.]

[Additional information submitted for the hearing record follows:]

156

157

158

159

160

161

162

163

164

165

166

167

168

169

170

171

172

173

174

175

176

177

178

179

180

Æ