U.S. GOVERNMENT PRINTING OFFICE

73–838 DTP WASHINGTON : 2001

ETHNIC MINORITY DISPARITIES IN CANCER

TREATMENT: WHY THE UNEQUAL BURDEN?

HEARING

BEFORE THE

COMMITTEE ON

GOVERNMENT REFORM

HOUSE OF REPRESENTATIVES

ONE HUNDRED SIXTH CONGRESS

SECOND SESSION

SEPTEMBER 25, 2000

Serial No. 106–247

Printed for the use of the Committee on Government Reform

(

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(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

DAVID M. MCINTOSH, Indiana

MARK E. SOUDER, Indiana

JOE SCARBOROUGH, Florida

STEVEN C. LATOURETTE, Ohio

MARSHALL ‘‘MARK’’ SANFORD, South

Carolina

BOB BARR, Georgia

DAN MILLER, Florida

ASA HUTCHINSON, Arkansas

LEE TERRY, Nebraska

JUDY BIGGERT, Illinois

GREG WALDEN, Oregon

DOUG OSE, California

PAUL RYAN, Wisconsin

HELEN CHENOWETH-HAGE, Idaho

DAVID VITTER, Louisiana

HENRY A. WAXMAN, California

TOM LANTOS, California

ROBERT E. WISE, JR., West Virginia

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

CHAKA FATTAH, Pennsylvania

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

HAROLD E. FORD, JR., Tennessee

JANICE D. SCHAKOWSKY, Illinois

———

BERNARD SANDERS, Vermont

(Independent)

KEVIN BINGER, Staff Director

DANIEL R. MOLL, Deputy Staff Director

JAMES C. WILSON, Chief Counsel

ROBERT A. BRIGGS, Clerk

PHIL SCHILIRO, Minority Staff Director

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C O N T E N T S

Page

Hearing held on September 25, 2000 ..................................................................... 1

Statement of:

Freeman, Harold P., M.D., Associate Director for Reducing Health Disparities, National Cancer Institute, Bethesda, MD, accompanied by

John Ruffin, Associate Director, Office of Research on Minority Health,

National Institutes of Health, Bethesda, MD, and Otis Brawley, M.D.,

Director, Office of Special Populations, National Cancer Institute, Bethesda, MD; Peter B. Bach, M.D., Memorial Sloan-Kettering Cancer

Center, Health Outcomes Research Group, New York, NY; Linda S.

Thompson, DrPH, RN, Center for Community Partnerships for Children & Families, Baltimore, MD, accompanied by Keith Plowden,

Ph.D., RN, assistant professor; and Elmer Huerta, M.D., American

Cancer Society ............................................................................................... 33

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

of Illinois ........................................................................................................ 12

Thompson, Hon. Bennie G., a Representative in Congress from the State

of Mississippi ................................................................................................. 25

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

Bach, Peter B., M.D., Memorial Sloan-Kettering Cancer Center, Health

Outcomes Research Group, New York, NY, prepared statement of ......... 43

Biggert, Hon. Judy, a Representative in Congress from the State of

Illinois, prepared statement of ..................................................................... 3

Freeman, Harold P., M.D., Associate Director for Reducing Health Disparities, National Cancer Institute, Bethesda, MD, prepared statement

of ..................................................................................................................... 36

Huerta, Elmer, M.D., American Cancer Society, prepared statement of ..... 64

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

of Illinois, prepared statement of ................................................................ 15

Thompson, Hon. Bennie G., a Representative in Congress from the State

of Mississippi, prepared statement of ......................................................... 27

Thompson, Linda S., DrPH, RN, Center for Community Partnerships

for Children & Families, Baltimore, MD, prepared statement of ............. 56

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ETHNIC MINORITY DISPARITIES IN CANCER

TREATMENT: WHY THE UNEQUAL BURDEN?

MONDAY, SEPTEMBER 25, 2000

HOUSE OF REPRESENTATIVES, COMMITTEE ON GOVERNMENT REFORM, Washington, DC.

The committee met, pursuant to notice, at 1 p.m., in room 2154,

Rayburn House Office Building, Hon. Judy Biggert (acting chairwoman of the committee) presiding.

Present: Representatives Biggert, Horn, Norton, Cummings, and

Kucinich.

Staff present: Daniel R. Moll, deputy staff director; S. Elizabeth

Clay, professional staff member; Robert Briggs, clerk; Michael

Canty and Toni Lightle, legislative assistants; Leneal Scott, computer systems manager; John Sare, staff assistant; Jon Bouker and

Sarah Despres, minority counsels; Tania Shand, minority professional staff member; Ellen Rayner, minority chief clerk; and Jean

Gosa and Earley Green, minority assistant clerks.

Mrs. BIGGERT. Good afternoon. A quorum being present, the

Committee on Government Reform will come to order.

I ask unanimous consent that all Members’ and witnesses’ written opening statements be included in the record. Without objection, so ordered.

I ask unanimous consent that all articles, exhibits and extraneous or tabular materials referred to be included in the record.

Without objection, so ordered.

Over the past 2 years, the Committee on Government Reform

has held several hearings on cancer issues. We have examined the

importance of early cancer detection and research, the role of complementary and alternative therapies, women’s cancers, prostate

cancer and the need to provide patients with their choice of treatment.

Today we are looking at the equally important topic of ethnic and

racial disparity in cancer treatments.

Our colleague Mr. Cummings requested this hearing in order to

raise the level of awareness of disparities in care, as well as to explore possible solutions to this problem.

We all know the devastating impact cancer has had on our society. One in four deaths in the United States is attributed to this

terrible affliction, and one in three Americans also develop some

form of cancer in their lifetimes. This year alone, some 552,000

Americans are expected to die of cancer.

Cancer is a disease that is color-blind. It strikes all socioeconomic, cultural and ethnic groups in America, but it often takes

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the deadliest toll among minorities. Although many ethnic minority

groups experience significantly lower levels of some types of cancer

than the majority of the U.S. White population, other ethnic minorities experience higher cancer incidence and mortality rates.

Let us just look at a few of these examples. The incidence and

mortality rates for multiple myeloma rose sharply in the United

States from the 1950’s to the 1980’s, then leveled off. The rates for

African Americans were twice as high as for Whites. Asian Americans are five times more likely to die from liver cancer associated

with hepatitis. Vietnamese women suffer cervical cancer at nearly

five times the rate of White women. Hispanics have had two to

three times the rates of stomach cancer.

According to a UAW/Ford report, the overall mortality rates for

African Americans in the five-county area around Kansas City is

63 percent higher than for Whites in the same area. In Wisconsin

death rates from cancer for African Americans rose 3 percent,

while death rates for Whites decreased by 2 percent. Breast cancer

occurs less often in African American women than White women,

but it is typically detected later. African American males develop

cancer 15 percent more frequently than White males.

These are just a few examples of the racial disparities we see in

cancer rates and deaths. They are complex and not well understood. They can be related to higher incidence of cancer, to later

detection and to cancers not being treated as well. Research has

shown that all three of these factors contribute to the disparity in

mortality.

I am pleased that two of my colleagues are here today to talk

about legislation they have introduced to deal with these issues.

Congressmen Jesse Jackson, Jr., and Bennie Thompson have both

introduced bills to elevate to a center the Office of Research on Minority Health at the National Institutes of Health.

I am pleased that Dr. Ruffin, the Associate Director for Research

on Minority Health, and Dr. Ottis Brawley from the Office of Special Populations at the National Cancer Institute are joining us

today to answer our questions.

Dr. Harold Freeman is returning to testify to the committee

today on behalf of both the National Institutes of Health as well

as the North General Hospital.

Last year an article published in the New England Journal of

Medicine indicated that in early stage lung cancer, African Americans received less aggressive treatment than White individuals.

The author of this research paper, Dr. Peter Bach of Memorial

Sloan-Kettering Cancer Center, is here today to share insights

from this research.

I am also pleased that we will hear from Dr. Linda Thompson

of the Center for Community Partnerships for Children and Families in Baltimore, MD, and Dr. Elmer Huerta of the American Cancer Society.

The hearing record will remain open until October 10th.

[The prepared statement of Hon. Judy Biggert follows:]

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Mrs. BIGGERT. Mr. Cummings, would you like to make an opening statement?

Mr. CUMMINGS. Thank you very much, Madam Chairlady. I want

to thank you for chairing this meeting today, and I want to take

a moment to thank Chairman Burton for convening this hearing at

my request entitled, ‘‘Ethnic Minority Disparities in Cancer Treatment: Why the Unequal Burden?’’ On June 8th, this committee held a hearing on the accessibility

of complementary and alternative medicines for cancer treatments

during which racial disparities in treatment were briefly examined

through testimony given by Dr. Harold Freeman, who will testify

today. However, as I requested, this hearing today affords us the

opportunity to engage in a more exhaustive investigation of the disparity issue as it relates to conventional treatments for cancer.

I requested this hearing in response to a study published by the

New England Journal of Medicine in October 1999, which reported

that African American patients with early stage lung cancer are

less likely than Whites to undergo life-saving surgery, and as a result are more likely to die of this disease. I’m pleased to see that

one of the principal investigators of the study Dr. Peter Bach is

here with us today to testify.

The treatment disparities revealed in the study were of great

concern to me, particularly when considered along with other data

regarding cancer incidence and mortality rates among minorities as

compared to the majority population. In fact, disturbingly, the incidence rate for lung cancer in African American and native Hawaiian men is higher than in White men. Hispanics suffer elevated

rates of cervical and liver cancer, and Alaska native and African

American women have the first and second highest of all cancer

and cancer mortality rates among females.

Cancer has also surpassed heart disease as the leading cause of

death for Japanese, Korean, and Vietnamese populations. Further,

while surgery is the treatment option for lung cancer in its early

stages, only 64 percent of African Americans had surgery at this

stage as compared to 76.7 percent of White Americans.

And paralleling recommended treatment options, cancer death

rates among African Americans are about 35 percent higher than

that for Whites, and in my district of Baltimore City, 251 African

Americans per every 100,000 people die of cancer each year as compared to 194 of Whites.

These statistics are compelling and lead us to question why such

disparities exist among races. Numerous studies have determined

that race is not just a biological category. Race reflects the intersection of biological, cultural, socioeconomic, political and legal determinants. As such, to address the unequal burden in minority

health, we must examine how all of these determinants individually and collectively play a role in creating existing health disparities. We must examine whether the trends in racial and economic

differences in health are due to genetic factors, or socioeconomic

factors such as income and cultural mores, including diet, have a

significant impact, or, as Dr. Bach’s study suggests, do disparities

result from racism and discrimination, which can lead to psychological stress and can restrict access to health care, education,

housing and recreational facilities, all key components to a healthy

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life. Is such racism and discrimination institutionalized within the

medical industry such that preventive measures and treatment options are limited for minorities? The goal of this hearing is to explore these very questions and, further, to examine how such disparities can be eliminated.

I understand the key ways to address the issue include increased

data collection and research toward the implementation of effective

prevention, treatment and health programs, the appropriate levels

of health and social services and nondiscriminatory access to health

care. However, I look forward to hearing from our witnesses today

on this issue.

I am particularly interested in the testimony of my colleagues,

Representative Jesse Jackson, Jr., of Illinois and Representative

Bennie Thompson of Mississippi, regarding legislation aimed toward these goals, and I thank them for their appearance here

today, and I thank them for their concern.

Our Nation is in a race for the cure; however, we must be mindful that this race against cancer must be run by and for all Americans. The entry into this contest should not be dependent on your

race, but must be based on your humanity. And winning the race

for a quality, healthy life, must be a victory for every citizen no

matter their race, ethnicity or socioeconomic status.

As we move closer to crossing that victory line, I will remain

committed to the biotech ethical principles of justice, fairness

which all call for one standard of health in this country for all

Americans, not an acceptable level of disease for minorities and another for the minority population.

And with that I close, Madam Chairlady, and I thank you.

Mrs. BIGGERT. Thank you very much, Mr. Cummings, and thank

you very much for requesting that we proceed with this hearing.

I might just mention that our chairman, Mr. Burton, is on the

way, but he was delayed by traffic, and so he asked me to act in

his stead, but he will be arriving later on in the afternoon, so I

have the opportunity to do this.

Our first panel is the Representative from Illinois, Jesse Jackson,

and Representative Bennie Thompson from Mississippi. On behalf

of the committee, we welcome you here today, and if you would

please proceed with your opening statements, and we’ll start with

you, Congressman Jackson.

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

Mr. JACKSON. Thank you, Madam Chair, Ranking Member

Cummings and members of the committee. I want to thank you for

this opportunity to discuss health disparities and particularly an

issue that I am concerned about, minority health research at the

National Institutes of Health. I am very pleased to join my colleague Congressman Thompson on this panel to share ideas and

concrete steps this Congress may take to address health status disparities in this country between African Americans and other ethnic minorities and that of the general population. I also want to

take this time to thank Congressman Cummings for asking for this

hearing and for working with me and Congressman Thompson on

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advancing this very important issue and helping to ensure that no

American is left behind.

I want to start by saying that the concept of elevating the Office

of Research on Minority Health, Chairwoman Biggert, to center

status and ensuring culturally competent curricula at medical

schools is a first step, but an important step, in a long journey to

end domestic health disparities. We still need to address the issues

of access, of prevention and treatment in a comprehensive manner.

In this time of national economic prosperity and double-digit

growth for the National Institutes of Health, I am disappointed to

report that the health status gap among Blacks and other underserved populations is getting worse and not better. In fact, African

American males develop cancer, as Congressman Cummings said,

15 percent more frequently than White males. For men and women

combined, African Americans have a cancer death rate of 35 percent higher than that for Whites.

In addition, the incidence rate for lung cancer in African American men is about 50 percent higher than in White men. Moreover,

several years the ago the Chronicle of Higher Education wrote an

article critical of the amount of dollars being spent on minority

health research at NIH. The Chronicle article cited that 0.4 percent

of extramural research grants were being awarded to African

American researchers pursuing these studies. In my view, the National Institutes of Health could do more and should be doing more

to address health care needs for all Americans.

At the beginning of the 106th Congress, I was pleased to be appointed to the House Appropriations Committee and to its Labor,

Health and Human Services, and Education Subcommittee. Congressman Louis Stokes of Ohio made gigantic strides in improving

minority health during his long and distinguished service on the

Labor-HHS-Ed subcommittee, and I hope to make a similar contribution.

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

opportunity to carefully review the program activities and the priorities of the Institute and to question the health care professionals

and researchers that carry out such vital work. In fact, the LaborHHS-Ed subcommittee held more than 40 days of hearings just

this year alone, about 20 half-day sessions, which were dedicated

to the oversight of NIH. I was privileged to attend almost all of

those sessions this year.

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

Sullivan, the former HHS Secretary and current president of Morehouse School of Medicine. Dr. Sullivan shared with me the testimony he gave before the Senate Labor-HHS appropriations subcommittee concerning an Institute of Medicine study, an IOM

study, that demonstrated a disturbingly low level of support for

cancer research among minorities through the National Cancer Institute. The cornerstone recommendation made by Dr. Sullivan in

his testimony was to elevate the existing NIH Office of Research

on Minority Health to center status. He contended that the existing

structure at NIH did not—I repeat, Madam Chair—did not adequately address or prioritize the issue of health disparities.

After asking scores of questions to the NIH Director and the Directors of the Institutes and Centers during last year’s hearings

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about these disparities, I became more convinced than ever that

Dr. Sullivan was right, the Office of Research on Minority Health

needed to be elevated to a center and to center status. Consequently, I worked with Dr. Sullivan and other health care professionals to fashion a bill that would do just that. The product of

those efforts is H.R. 2391, which I introduced on June 30, 1999,

and I am also pleased to see that Congressmen Thompson and

Lewis have incorporated title 1 of their legislation, H.R. 3250, the

Health Care Fairness Act, as essentially the essence of 2391.

Madam Chair, the bill in sum does this, as I prepare to close: No.

1, it provides the Director of the center a seat at the table, which

they currently do not have, when NIH Institutes and Center Directors meet to discuss NIH policy and priorities. Currently the Director of the office does not even attend those meetings.

Second, it calls for the health status disparities to be prioritized

at NIH through the establishment of an NIH-wide strategic plan

for health disparities with the center playing a key role in such a

strategic plan.

Third, it establishes direct grantmaking authority for the national center, guided by the work of scientific expertise of a national advisory council. Right now the office Director can’t spend

his own budget unless an Institute Director allows him to fund a

grant through his or her Institute.

And last, Madam Chair, it provides institutional support for

those minority health professions schools which have a history and

mission to serve and train minority health professions and conduct

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

the problem of health disparities, institutions which have a mission

to solve these problems must be strong and viable.

Madam Chairman, I urge this committee to look seriously at the

pieces of legislation that would elevate the Office of Research on

Minority Health to a national center. Elevating this office will help

save more lives and families from being sapped by illness and anguish. Together we can ensure that health care needs of all Americans are adequately addressed.

Madam Chairman, Ranking Member Cummings and members of

the subcommittee, I thank you for the opportunity to present my

views.

Mrs. BIGGERT. Thank you very much, Congressman Jackson.

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

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Mrs. BIGGERT. Congressman Thompson, would you like to proceed?

STATEMENT OF HON. BENNIE G. THOMPSON, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF MISSISSIPPI

Mr. THOMPSON. Thank you, Madam Chairman, Ranking Member

Cummings. I associate myself with the comments made by my colleague Congressman Jackson from Illinois.

I, along with Representatives Lewis, Watts, and Norwood introduced House Resolution 3250, the Health Care Fairness Act of

1999, on November 11, 1999, in order to address the glaring disparities between the quality of health care received by Whites and

that received by minorities.

Madam Chairman, racial and ethnic minorities are not receiving

adequate health care. Over the past few decades, we have made

great advances as a Nation in science and medicine. However, all

our citizens have not shared in the benefits of these advances. Minority populations have significantly higher rates of death from

cancer and heart disease as well as higher rates of HIV/AIDS, diabetes and other severe health problems.

We know that poverty, lack of health insurance and other barriers to care are undermining the health of minority communities.

However, we have not made the commitment necessary to understanding the genetic and behavioral differences that allow and affect health outcomes. In addition, recent studies show that bias in

the health care system is another factor in racial and ethnic health

disparities.

All of us are familiar with all the studies, Madam Chairman,

that document consistently what problems we encounter. One that

I think is glaring for this hearing is that Black men who contract

prostate cancer are 133 percent more likely to die than White men.

Minorities are also underrepresented in medical education and in

the health care delivery system. Although Blacks, Hispanics and

Native Americans make up 24 percent of the U.S. population, only

7 percent of physicians, 5 percent of dentists and 6 percent of medical school faculty members are from one of these minority groups.

The Health Care Fairness Act includes an increased commitment

to research on minority health, improved data systems and culturally competent health care delivery. These changes will increase

our knowledge of the nature and causes of these disparities and improve the quality and outcomes of health care services for minority

populations.

There is an inherent need to include minority health as a top legislative initiative. Just like Medicare reform and affordable prescription drugs for seniors, immediate and decisive action must be

taken to address the disparate treatment minorities receive from

health care providers. Already a number of health care studies

have been released which clearly demonstrate the fact that minorities receive less and/or different treatment by health care providers.

Madam Chairman, we must make every effort to address these

problems and reverse the extremely disturbing trend. My bill is a

first positive step in that direction. H.R. 3250 has gained the supVerDate 11-MAY-2000 09:16 Aug 06, 2001 Jkt 000000 PO 00000 Frm 00029 Fmt 6633 Sfmt 6633 C:\DOCS\73838.TXT HGOVREF1 PsN: HGOVREF1
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port from both sides of the aisle along with several health-care-related organizations.

Again, I want to thank my colleagues for their support for this

legislation, and I urge that we as Members of Congress push for

passage of this bill.

Parenthetically, Madam Chairman, let me indicate that I represent a congressional district where all 24 counties are medically

underserved. We need all the help that we can get. It’s the third

poorest congressional district in America, and I hope you can understand my passion for this piece of legislation and would encourage the committee’s positive report on it. Thank you.

Mrs. BIGGERT. Thank you very much, Congressman Thompson.

[The prepared statement of Hon. Bennie Thompson follows:]

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Mrs. BIGGERT. We’ll have questioning now, and I’ll begin.

Congressman Jackson, Congressman Thompson just mentioned

that all of the communities in his area are underserved. Are there

any existing programs in your district working to improve minority

access to care?

Mr. JACKSON. There are a number of existing programs and a

number of existing health care facilities in our district that are

seeking to provide access and quality, high level of care to the underserved, but the fundamental issue that plagues NIH is not one

that is relative to access or availability of care. It is that we have

on the Appropriations Committee set out to double NIH’s budget over the last 5 years. Now, the budget is roughly $88 billion, and

the IOM study showed that 0.4 percent of extramural grants at

NIH were not addressing fundamentally well-coordinated research

across the $88 billion that we were spending on many of these concerns.

And one of the questions, for example, that came to mind during

the course of our inquiry, Madam Chairman, was this. I remember

in raising the question to the head of the National Institute on Alcoholism and Alcohol Abuse, and I asked the Director of that center

was he aware of any studies that had occurred on the impact of 40

ounces of malt liquor on the hypothalamus or medulla oblongata,

two very important regions of the brain, and he said at that time

that he was not aware of any studies that the National Institute

on Alcoholism and Alcohol Abuse had conducted.

I told him was he aware that malt liquor is predominantly a liquor that is sold in minority communities, African Americans and

Hispanics. He said he was aware of that. At that time a member

of his own panel then interrupted and said, Congressman Jackson,

I’m also afraid and very disappointed to tell you that they are now

marketing 64 ounces of malt liquor in African American and Hispanic communities.

Well, Madam Chairman, needless to say, without studies to

study why malt liquor is marketed in our community—the

hypothalamus and the medulla oblongata are the regions of the

brain, for example, that remind you that you are married—so if

people are consuming this alcohol in our communities, and people

don’t live in these communities, then who is to say whether or not

the National Institutes of Health shouldn’t be offering advisory

warnings to corporations, don’t sell malt liquor in 40-ounce and 64-

ounce containers. It maybe should be sold in a 12-ounce container

and then consumed in only 12 ounces at a time.

So these are fundamental problems that need to be coordinated

across NIH as this Congress seeks to double its budget, and many

of these issues are not happening right now at NIH unless there’s

an office that specifically is aware of those concerns, Madam Chair.

Thank you for your question.

Madam Chairman, I am sorry it’s $18 billion. I think our entire

labor HHS bill is about $106 now, up from $88. Things change

around here every minute.

Mrs. BIGGERT. Well, I certainly share your respect and admiration for the former HHS Secretary Dr. Lewis Sullivan, and when

Dr. Sullivan advised you of his recommendation that the Office of

Research on Minority Health be elevated to a center at NIH, did

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he expand on why he felt this would be necessary, and was this his

primary recommendation, and did he offer other ways to get at

these disparities?

Mr. JACKSON. Madam Chair, when he testified before Senator

Specter’s committee in the Senate, it became clear amongst the

Senators who were participating in the panel that the lack of coordination upon our own inquiry in our Labor-HHS subcommittee

further showed that there was a coordination problem on minority

health disparities at the National Institutes of Health. Dr. Sullivan

had no other recommendation other than the fact that he felt that

this center should be treated like other centers, that it should not

have to necessarily relate solely to the Director of NIH or get permission in a kind of paternalistic way, that it should be some center that somehow is housed in the Director’s office, but it should

be treated like the other centers with the ability to offer research

grants to those institutions that were passion-driven.

As you know, Madam Chair, research is a passion-driven subject,

and so people who have lost parents and family members to various diseases who choose to pursue research are often driven by the

passion of finding a cure for that which ails a personal family

member or personally afflicts or affects their community. The absence of these research grants, these extramural grants, at these

institutions that are being driven by this passion Dr. Sullivan suggested was the most fundamental problem, and that required its

own coordination and its own center.

Mrs. BIGGERT. Thank you. My time has expired, so I’ll turn to

Congressman Cummings.

Mr. CUMMINGS. Thank you very much, Madam Chairlady.

Representative Thompson, I think you talked about in your testimony—I mean, in your legislation, rather, it addresses the issue of

cultural competency in medical education. Can you help us with

that and what the significance of that is? It sounds like that’s what

also Representative Jackson is talking about.

Mr. THOMPSON. The passion.

Mr. CUMMINGS. Right.

Mr. THOMPSON. Absolutely. We have four African American medical schools in this country. When we started looking at the research for this bill, we found that in NIH only four-tenths of 1 percent of their money went to minority institutions. So we felt that

given the minority population in this country, that was a problem.

One of the reasons we’re talking about creating this center is to

get an elevation or, if you please, a standing that would give additional finance and credibility.

The other concern, to be quite honest with you, is everyone has

been sympathetic to all these health concerns, but it seems to fall

on deaf ears when it comes to research and actual dollars in support of it. So one of the reasons we have coined this bill, we also

call it a civil rights bill, in that richest country in the world, it’s

an absolute travesty that we have statistics for American citizens

so glaring as what we have here today that we can’t in good conscience not support this bill, because it is the right thing to do, and

that’s the cultural disparity.

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Mr. CUMMINGS. Representative Jackson, the Office of Minority

Research seems to—I guess they do some—would you agree they

do accomplish some pretty good research?

Mr. JACKSON. Ranking Member Cummings, on our committee

we’ve been very careful to use the language ‘‘good research.’’ They

pursue good research. They don’t pursue minority research. They

don’t pursue Black research. They don’t pursue substandard research, language that was used by some members of the committee. They pursue good research, and, for example, a classic example

of good research, at Howard University School of Medicine, in one

of their research departments, they have an African American

woman who is preeminent in her field for the study of the human

genome. They have other members of their faculty who have done

outstanding work from the study of the human genome on back

across to cancer research and a number of other issues that confront minority communities in terms of health research.

When many of these professors submitted papers to the NIH for

grants and research funding from Howard University, they were

denied. Well, one member of the faculty left Howard University

and joined another Ivy League—essentially Ivy League—did not

change one word in their research paper, resubmitted the paper to

NIH, and the grant was awarded. So why it wouldn’t be awarded

when that research professor was at Howard University, but when

they then shifted to an Ivy League school, that research was rewarded with an award grant without one word being changed in

the proposal is suspect, and that’s why you have to create a center

at NIH that is specific and that honors and understands the impact

and significance of addressing these health disparities where the

passion research must occur.

Mr. CUMMINGS. And I take it that’s why you are promoting and

pushing on this making authority that you talked about.

Mr. JACKSON. Yes, sir, I am, and I believe Congressman Thompson’s bill, a centerpiece of his bill as well is the ability of the center

to provide research dollars to support good research on these questions.

Mr. CUMMINGS. Now, one of the things that we’re going to be addressing, some of the witnesses will be addressing later on in the

hearing, is this whole idea—and Chairlady and I addressed it just

a few moments ago, and I think you both talked about it—how you

can have situations where African Americans may have less incidence of certain cancers, but yet—and still from a percentage

standpoint and a number standpoint they die at greater rates? And

I guess the older I get, I’m appreciating the concept of public health

in that a lot of African American people and poor people—and poor

people are dying long before their time, and I am just wondering

how does this legislation, both of you—and this will be my last

question because I see my time is up—how does your legislation

address those kind of issues?

Mr. JACKSON. Mr. Chairman, as I began in my opening remarks,

elevating the Office of Research on Minority Health at NIH to a

center status, it is my humblest opinion, sir, it does not do that.

This is about research amongst medical institutions, amongst research professionals to inspire and to encourage them to pursue research that might be available across NIH that might apply to all

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Americans. But Congressman Thompson is right when he says his

district is the third poorest district in America. That’s indicative of

the absence of trained medical professionals in his district. It’s indicative of how rural his district is.

It is the same thing in Appalachia. If we weren’t sitting here as

African Americans, access to health care, quality health care, doctors who can earn a reasonable living in that environment providing them with MRIs and CAT scan machines to be able to check

for fundamental illnesses, and ability to pay are still the fundamental issues that confront our health care system.

And as Chairwoman Biggert indicated in her opening remarks,

the ability to detect many of these diseases early is a significant

factor in reducing health disparities, but in many of our communities, from African Americans to Latinos to those socioeconomic

communities that are economically depressed, if they don’t feel

comfortable going to hospitals and to doctors and to health care

clinics because of the myriad of barriers that confront our own

health care delivery system, then we find out these statistics at the

tail end of their lives, which oftentimes reduces the life span of an

American.

Mr. THOMPSON. Congressman Jackson is correct. You have to

have that passion for the research. If you’re not interested in minority health outcomes, then it is a great possibility that you won’t

give it the passion required to come up with good research and

good data.

The other thing is most of the African American doctors in this

country happen to graduate from African American medical

schools. We have to enhance that opportunity. We have to give

those schools the best resources possible to go back and practice in

that medically underserved area. If we could do that, we could

make a tremendous impact on the problems associated with inadequate health care delivery systems.

A number of grants and contracts, as my bill talks about, it’s

very important. A lot of it has to do with resources. We have documented the problem. We’ve tried to offer legislation to address it.

If we can get the support, bipartisan support, of our bills, I am convinced that over a period of time we can reduce those numbers so

that it won’t be a racial disparity attached to health care in this

country.

Mr. CUMMINGS. Just a last comment. As you were talking, both

of you were talking, I couldn’t help but think about this morning

in my district with—we have Johns Hopkins University and also

University of Maryland, both with medical schools, but Johns Hopkins, you know, I was just thinking that Johns Hopkins receives

hundreds of millions of dollars yearly for research, and I was just

thinking if you gave Meharry just some of that, it would certainly

enhance the school, would create a better environment for those

doctors or students that are coming through there, and would give

them an opportunity to do the very things that you all have talked

about this morning, being giving service to those underserved communities and having some kind of cultural sensitivity at the same

time.

I want to thank both of you. Really appreciate it.

Mrs. BIGGERT. We’ve been joined by Representative Kucinich.

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Do you have questions?

Mr. KUCINICH. I just wanted to add my support for the legislation sponsored by Mr. Thompson and with Mr. Jackson’s participation. As someone who served as mayor of a major city and has seen

the disparities that you’ve talked about in terms of the demand for

health care that often is unmet, the point that you make here is

so important, and I think that all of us in the Congress should be

working very closely with you to make sure that these issues are

addressed so we cannot only wipe out the disparities, but also, even

more significantly, attack that very nature of why it is that people

are getting cancer anyhow, let alone that they have it more than

anyone else.

So I salute both of my colleagues for their work on this, and I

look forward to working with you. Thank you. Thank you.

Mrs. BIGGERT. If there are no more questions, then we will thank

you very much for coming, and thank you very much for your testimony, and we really appreciate the passion that you have for this.

Thank you very much. We appreciate it, and if the next panel

would like to come up.

If you would all like to stand, as the committee usually swears

everyone in if you’re giving testimony or here to answer questions.

So if you would like to raise your right hands.

[Witnesses sworn.]

Mrs. BIGGERT. Thank you, and be seated, please.

Let the record reflect that the witness responded in the affirmative.

On behalf of the committee, we welcome you here today, and I

think we will begin with Dr. Freeman.

Dr. FREEMAN. Thank you, Madam Chairman.

Mrs. BIGGERT. And you’re recognized for an opening statement,

which is usually about 5 minutes, then we will have 5 minutes of

questioning by the committee here after all of you have testified.

Thank you.

STATEMENTS OF HAROLD P. FREEMAN, M.D., ASSOCIATE DIRECTOR FOR REDUCING HEALTH DISPARITIES, NATIONAL

CANCER INSTITUTE, BETHESDA, MD, ACCOMPANIED BY

JOHN RUFFIN, ASSOCIATE DIRECTOR, OFFICE OF RESEARCH ON MINORITY HEALTH, NATIONAL INSTITUTES OF

HEALTH, BETHESDA, MD, AND OTIS BRAWLEY, M.D., DIRECTOR, OFFICE OF SPECIAL POPULATIONS, NATIONAL CANCER INSTITUTE, BETHESDA, MD; PETER B. BACH, M.D., MEMORIAL SLOAN-KETTERING CANCER CENTER, HEALTH OUTCOMES RESEARCH GROUP, NEW YORK, NY; LINDA S. THOMPSON, DrPH, RN, CENTER FOR COMMUNITY PARTNERSHIPS

FOR CHILDREN & FAMILIES, BALTIMORE, MD, ACCOMPANIED BY KEITH PLOWDEN, Ph.D., RN, ASSISTANT PROFESSOR; AND ELMER HUERTA, M.D., AMERICAN CANCER SOCIETY

Dr. FREEMAN. Thank you, Madam Chairman and distinguished

Congressmen and women. I am Dr. Harold Freeman, and I am

pleased to have the opportunity to speak to you this afternoon

about disparities in the diagnosis and treatment of cancer and the

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unequal burden of cancers among minorities, the poor and the underserved.

This spring Dr. Klausner, the Director of the Cancer Institute,

asked me to consult with him on these issues, and later, particularly 24 hours ago, I was appointed as the Director of the new Center to Reduce Cancer Health Disparities, so I have been in this position for 1 day, including sleeping time.

Let me point out that profound advances have been made in biomedical science over the last several decades. Many Americans

have benefited, but some have not. And there are some groups of

people who experience a heavier burden of cancer mortality and incidence, particularly certain minorities, the poor and the underserved. I believe that the unequal burden of cancer in our society

is a challenge to science and is a moral and ethical dilemma for our

Nation.

Health disparities have been framed historically as racial and

ethnic differences, and clearly some races and ethnic groups don’t

do as well, but the fact of the matter is, as you have pointed out,

Congressman Cummings, is that races are not biological categories.

They are social and political categories which we need to keep in

mind.

The consequences of racism, however inherent in racial classifications, have for some racial and ethnic groups been associated with

several negative factors. For example, fewer social and educational

and economic opportunities associated with racism, greater exposure to stress and unsafe environments and reduced access to quality health care.

I would like to point out in another role that I have as a member

of the President’s Cancer Panel, last year, in 1999, we reviewed the

National Cancer Institute’s history, current status and evolution.

We made one major conclusion, that whereas we had made tremendous progress in the war against cancer since 1971 when Richard

Nixon declared that war, research has advanced greatly during

that time, but we believe—the panel believes that there’s a critical

disconnect between what we discover in America and what we deliver to the American people. Barriers that prevent the benefits of

research from reaching all of our populations, particularly those

who bear the greatest disease burden, must be identified and removed.

In my own work I have thought a great deal about this, and I

have reduced these considerations to three major considerations

that cause disparities. No. 1 is poverty itself, which has a universal

effect. Poor people have substandard living conditions. Poor people

are less educated, have frequently a risk-promoting lifestyle and

lower access to preventive health care.

Poverty has a universal human effect, but it is disproportionately

reflected in certain groups such as African Americans. A third of

African Americans are poor. African Americans make up only about

12 percent of our population.

The second factor I think is very critical is culture, including

communication systems, belief systems, values, traditions, lifestyles, attitudes and behaviors which need to be understood. Now,

culture, Madam Chairman, is not equal to race. There are many

cultures within a race, but I think in our research we need to unVerDate 11-MAY-2000 09:16 Aug 06, 2001 Jkt 000000 PO 00000 Frm 00038 Fmt 6633 Sfmt 6633 C:\DOCS\73838.TXT HGOVREF1 PsN: HGOVREF1
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derstand what it is about various culture of our society that may

lead to excess, incidence and sometimes mortality.

The third factor which we’re here to talk about today is social injustice, and social injustice is reflected in studies that we’re examining here today, particularly the example given by the fact that

Black Americans presenting with early cancer of the lung, colon,

breast and prostate are less likely to get the curative treatment.

Dr. Bach will elucidate this further.

What are the reasons that this could happen in America? Correcting for socioeconomic status and whether people have insurance

or not, these conditions still hold. So we need to look at what it is

in America that could allow a person or a group of people to

present with early cancer, curable cancer, and not get treated in

the same way as others.

In my own view, the answers have to be in two categories. No.

1, what is the attitude and the bias of the health care givers? This

seems to be an element that needs to be further explored. No. 2,

what is the level of distrust of the people who are being treated?

We’ve had a Tuskegee incident here, and I think there’s still concern among Black people that they may be experimented on. So

these two elements need to be further explored.

I believe that the issue goes very deep. The issue has to do with

how American people in one group perceive each other, value each

other and behave toward each other, so that the question of social

injustice, the short arm of it is what’s happening today. The long

arm of it is what has happened over nearly 400 years in America

with respect to social injustice with slavery and legalized segregation.

I’d like to end, because I believe my time is probably up, with

a general statement. I believe that we are in a very critical time

in America. We have made great advances in science. Those advances are not being evenly applied across our population. Poverty

seems to be a determining factor, but also social injustice has a

bearing. And so I believe that in our studies to come, we must

learn more about these differences in populations, whether they’re

intrinsic within the population’s culture or whether they’re extrinsic, related to how people are being treated in our society.

One thing that we need to do is to create standards of care for

all American people and know what they are. We need to monitor

those standards to see that everyone is treated in the same way.

And we need to develop a country that has health providers that

are very diverse, that reflect the country that we really are so that

the issue of sensitivity of how people are getting treated in our society will somewhat be improved.

Thank you very much.

Mrs. BIGGERT. Thank you very much, Doctor.

[The prepared statement of Dr. Freeman follows:]

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Mrs. BIGGERT. We’ll proceed then to Dr. Bach.

Dr. BACH. Thank you very much.

Although cancer incidence rates are only 13 percent higher in

Blacks than in Whites in the United States, mortality rates from

cancer in Blacks exceed that of Whites by 33 percent. Lung cancer

ranks No. 1 amongst these cancer killers and claims the lives of

more than 150,000 people each year. Just as in cancer overall, we

have known for a while that lung cancer disproportionately affects

Black Americans.

Today when compared to White Americans, Black Americans are

disproportionately affected by lung cancer in two ways. First,

they’re at an increased risk of developing lung cancer. Second, they

have a far shorter survival after they are diagnosed with lung cancer.

Our research group based at Memorial Sloan-Kettering Cancer

Center in New York and at the National Cancer Institute here in

Bethesda conducted a study that was published in October 1999 to

examine this latter problem, specifically why is survival shorter for

Black patients than for White patients after a diagnosis of lung

cancer. Our focus was on the survival of Black and White patients

who were diagnosed at a potentially curable stage, because we

knew that even among these patients, Black patients have much

poorer survival than White patients.

To illustrate this point let me give you some survival statistics

from the patients we studied, Black and White patients 65 years

and older who have potentially curable lung cancer. During the

years of our study, we saw that 34 percent of White patients who

began our study were alive 5 years after diagnosis, while only 26

percent of the Black patients in our study were still alive.

We thought for a number of reasons that this difference in survival between Blacks and Whites with potentially curable lung cancer might be due to Black patients receiving inferior treatment relative to that received by White patients, so we designed a study to

address two questions: First, are Black and White patients who are

diagnosed with potentially curable lung cancer equally likely to get

the best available treatment, specifically surgical removal of their

cancer? Second, if treatment rates are unequal, then to what extent

do differences in treatment account for the overall lower survival

rates that we see in Black patients?

Our study had some special features I’d like to point out. First

of all, we addressed our questions by analyzing the National Cancer Institute’s SEER data base. This comprehensive cancer incidence data base is the primary source for most cancer statistics.

Second, we limited our analysis to patients who were over—who

were 65 years or older, and, therefore, all of the patients in our

study had Medicare insurance at the time that they were diagnosed. Therefore, we knew that any differences in treatment that

we observed would not be due to differences in insurance coverage.

With the caveat that our findings only report on results for patients 65 years and older, we found two things. First, while 77 percent of White patients underwent surgery for their lung cancer,

only 64 percent of Black patients underwent surgery, and this difference was highly statistically significant.

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Second, although overall there were the large survival differences

between Whites and Blacks that I’d mentioned a little earlier, we

saw that those Black and White patients who were treated equally

also had equal survival.

The consequence of these two findings put together is that differences in treatment are responsible for a large part of the difference in survival that exists between Black and White patients

with early stage lung cancer.

I should emphasize that this difference in treatment was not due

to differences in insurance coverage, as I’ve already mentioned. All

of these patients had Medicare insurance. Also, this difference in

treatment was not due to differences in socioeconomic status. Even

among those White and Black persons who were within the lowest

income quartiles in our study, we saw that 71 percent of poor

White patients would have surgery for lung cancer, while only 63

percent of poor Black patients underwent surgery, and this difference also was highly statistically significant.

We cannot determine from the study why Black patients receive

inferior treatment. Our study does provide an estimate for the

magnitude of the difference in treatment received by Blacks and

Whites and also documents that this difference in treatment is responsible for some of the observed survival differences that we see

in lung cancer.

At Memorial Sloan-Kettering we are continuing our efforts to understand and improve the treatment of Black persons with lung

cancer. We have formed a partnership with North General Hospital

in Harlem in collaboration with Dr. Freeman to expand the screening and treatment services that we are able to offer for persons in

need.

In addition, the American Lung Association in New York City

and the National Cancer Institute have both continued to provide

our research group with funds so we can continue our inquiry into

the disparities we see in both cancer treatment and survival.

Thank you.

Mrs. BIGGERT. Thank you very much, Doctor, for your insight.

[The prepared statement of Dr. Bach follows:]

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Mrs. BIGGERT. Dr. Thompson, if you would like to proceed.

Ms. THOMPSON. Madam Chair, Ranking Member Cummings, and

the rest of the committee, thank you for asking me to talk about

what we’re doing at the University of Maryland to reduce disparities. I would like to just highlight some of the things we’re doing

for African American males and some of the community level interventions we’re doing at the University.

Faculty and students at the School of Nursing reach out to communities in Maryland by providing direct primary health care services to medically and geographically underserved populations in a

number of innovative models.

Faculty and students operate a community-based health center

which brings low-cost health care services to an inner-city community in Baltimore City, as well as manage and staff 14 school-based

and school-linked clinics throughout the State.

Other examples of initiatives that we do is we offer—we conduct

six mobile health units that are staffed by the School of Nursing

and faculty. These services are mobile health services to vulnerable

populations in the State.

We also train lay workers to conduct outreach education and support in high-risk communities throughout the State of Maryland.

Hundreds of individuals thought of as hard to reach are touched

by these services. Lives are being saved through these primary

health care initiatives.

For years, my colleagues at the University of Maryland have researched the problems facing African Americans in this country.

We have worked to better understand African American males,

their cultural beliefs and practices and how they are impacted by

public health.

The result of clinical studies show that lack of accurate knowledge about cancer and cultural misconceptions are major barriers

to increasing the number of African American men who participate

in early screening and treatments.

Our research has also shown that encouragement by loved ones

and friends can encourage healthy life-styles. More research is

needed, however, to better understand these factors and their impact on behavior and to design more culturally specific innovations

that can motivate African American men to seek early cancer

screening and care.

Through funding from the National Cancer Institute, the Maryland Special Populations Cancer Network partnered with community-based organizations to address Black male cancer disparities

in Baltimore City, MD’s Eastern Shore and southern Maryland.

In July, the University held a cancer prevention workshop within

the State; and we reached hundreds of people who spoke candidly

about the cancer prevention needs of minorities and lack of educational resources that are available to meet their needs.

At the University of Maryland-Baltimore, researchers are looking

at ways to reduce costs as we continue to try to provide quality

health care service. We believe that prevention is the moral and

cost-effective course to take.

We are convinced that effective reduction in cancer incidence and

mortality among African American men requires community-based

education and public health efforts specifically tailored for them.

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We know from data from the World Health Organization that

availability, accessibility and acceptability of resources determine

access to preventive health care interventions.

Lack of any health insurance remains a critical problem to trying

to serve high-risk communities.

Preventive cancer screening is critical, and we need to develop

workable strategies in order to reach people throughout the country.

I have seen in my practice many men who come in for care who

work every day and are unable to get the services they need until

they’re disabled. We do need to try to reduce this disparity because

it increases the burden of health care costs.

I am convinced that with increased Federal funding we would be

able to provide targeted primary health care services to the community. The strategies we seek in order to reduce the disparity— to provide more direct primary health care services to high-risk minority communities, nurse practitioner clinics and accessible mobile

vans—are strategies we have seen that could be used to reach

high-risk communities. The use of lay workers is also an effective

way to out reach to communities. If we are to successfully eliminate minority health disparities we must make every opportunity

to reach African American men.

Thank you.

Mrs. BIGGERT. Thank you very much, Dr. Thompson.

[The prepared statement of Ms. Thompson follows:]

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Mrs. BIGGERT. Now Dr. Huerta.

Dr. HUERTA. Buenas tardes. Good afternoon. My name is Elmer

Huerta. I’m the founder and director of the Cancer Risk Assessment and Screening Center of the Washington Cancer Institute at

the Washington Hospital Center here in Washington, DC.

I am the founder of a clinic that has a theme. It says, if you are

sick, this is not a place for you. This is for healthy people only.

Over 7,500 people crossed our doors in 5 years. You can’t imagine

how much I shiver every time I have an uninsured person come in

for cancer screening. I wonder to myself how this wonderful and

powerful country can allow its citizens to have this bad time.

I’m pleased to appear before you today as a member of the National Board of Directors of the American Cancer Society. As you

might know, the American Cancer Society is the Nationwide, community-based, voluntary health organization dedicated to eliminating cancer by preventing cancer, saving lives and diminishing suffering from cancer through research, education, advocacy and services.

Most of my work as a physician has focused on providing care

to those in greatest need. My dedication has been to my community, which primarily represent Latinos and African Americans in

the greater Washington, DC, area. Allow me to share a little bit

about them.

Many of my Latino patients have origins outside of these borders, our borders. They are Americans nonetheless who are exploding in numbers and make up an increasing number of the U.S.

work force.

As for my African American patients, some of them are native

Washingtonians whose ancestors helped build this wonderful city

known as the Capitol where decisions are made daily that effect

the lives of all Americans. Despite the history and the many contributions made by these populations, they are not pictures of

health. Too many of them are uninsured, unemployed and at an increased risk for cancer and other chronic diseases.

We all know people—friends, neighbors and beloved ones—who

are surviving cancer today in greater number than before. The evidence of decreasing cancer mortality is encouraging and presents

a compelling argument for prevention, early detection and scientific

research. However, the higher cancer incidence and death rates

among minorities suggest that not all Americans are equally benefiting from scientific breakthroughs and cancer prevention and control efforts.

So we ask ourselves, why do these disparities exist and how can

we address this problem?

For starters, let me give you a snapshot of this crisis. As a Nation, we have spent $1 trillion each year on health care, yet only

1 percent of that goes to population-based prevention efforts. That

translates into less than a penny a day per person. Sergeant General David Satcher emphasized this fact at the launching of

Healthy People 2010. Primary prevention strategies such as tobacco control, nutrition and physical activity do save lives and do

reduce the social and economic costs of cancer and other diseases.

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It seems to me that most of our medical establishment is very

interested in Mrs. Smith’s tumor. What I request from you is that

we must focus on Mrs. Smith herself.

The American Cancer Society has identified several areas of

promise that will help us tackle these challenges, some of which

are captured in the Institute of Medicine Report on the Unequal

Burden of Cancer. I respectfully urge the committee to consider the

following recommendations. I can assure you that the American

Cancer Society stands ready to assist you in any way.

First, we must sustain and expand the proven research programs

that have enabled us to pursue a path of scientific excellence and

discovery in cancer research, while also seizing extraordinary opportunities to further the progress made by our previous research

success.

Second, we must focus on strategies that involve communities in

creating and delivering the programs that will reduce and eliminate that unequal burden of cancer, with government providing the

support and resources critical for success.

Next, we must place a greater focus on prevention and early detection efforts. That means bringing cancer screenings to the people, instead of waiting for them to come to us. We must continue

our efforts to build awareness through creative approaches utilizing

channels such as the media, radio, our schools and churches. Resources need to be directed toward development of programs that

will better reach and serve medically underserved populations.

We must continue to fund research. We must certainly apply

what we know about cancer prevention, early detection and treatment equally to all communities to ensure that all Americans benefit from the progress we have made in the 20th century. Eliminating disparities is critical to the success of our national cancer program and to improving the lives of all American families.

Thank you.

Mrs. BIGGERT. Thank you very much, Doctor.

[The prepared statement of Dr. Huerta follows:]

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Mrs. BIGGERT. We’ll now turn to the questioning, and at 5 minutes—the other two witnesses are going to answer questions that

we might have.

In fact, I will—we’ll begin by asking Dr. Ruffin, I think that, as

you know, the National Institutes of Health has traditionally opposed the creation of any new centers. So what is the NIH position

on the two bills that have been introduced by Congressman Jackson and Congressman Thompson to elevate the Office of Research

on Minority Health to a center?

Dr. RUFFIN. Madam Chairman, if you would permit me to make

one sentence before I get to the answer of your question.

But I wanted to say, in light of much of the testimony that has

been provided here, that my office, the Office of Research on Minority Health, was created 10 years ago during the tenure of then Secretary Louis Sullivan; and I must say to you that over that 10 year

period of time I have had the opportunity to go to various parts of

this country and listen to testimony, much the way you are listening to it here today. We’ve held hearings around the country where

more than 1,000 people have testified; and individuals who are survivors of various chronic diseases, not just cancer but heart disease

and diabetes, scientists as well as politicians and others have come

before the committee.

I think today you’ve heard a number of concepts and terms that

have been mentioned to you, that when we look at outcome, much

of this may be due to biology, some of it may be due to

socioeconomics, some of it may be due to legal and political poverty

and racism, all in terms of what the health outcome is going to be

eventually.

I think in a nutshell I must say to you that much of what we’ve

learned from many of the hearings around the country is in fact

that these outcomes are due to all of the above. They have all

played a special role in some form or fashion.

The point is, we must get to the point in this country where we

stop passing the buck. With those who are in the box that has to

do with biology, say that, no, it’s not mine, it’s really about the socioeconomic, it’s about—all about poverty. It’s about all of the

above, and until partnerships are built between the boxes then we

will be here talking about this for a long, long time.

To your specific question, I think yes is the answer. There’s no

denying of the fact that in the early going at the National Institutes of Health there was some skepticism about what would happen if, in fact, a Center for Research on Minority Health was created at the NIH. I think there is absolutely no doubt about it, that

we’ve come a long ways and that that thought no longer persists.

The National Institutes of Health is convinced that the elevation

of the office to center can play a very, very important role in the

solution to this great problem.

Mrs. BIGGERT. Thank you very much.

Before I forget to do some housekeeping, it appears that Chairman Burton’s plane has been further delayed by the weather. If

you’ve looked outside the last couple of hours, you would know that

that has happened. So he has asked that his statement be included

in the record. So, without objection, that would be so ordered.

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I think I’ll then turn to Dr. Brawley and ask you about what are

some of the projects that the National Cancer Institute has sponsored to date to look at the ethnic and racial disparities in cancer

care.

Dr. BRAWLEY. Madam Chairwoman, the Institute a few years ago

established what was called the Office of Special Populations Research, which I revived; and we have looked at a number of studies

that have been done by the Institute over the last decade and that

actually show by race equal treatment yields equal outcome. There

are also a number of studies—Dr. Bach’s being the latest and perhaps the best done—that indicate there is not equal treatment in

the United States.

So the Cancer Institute has really been doing both the work to

demonstrate that equal treatment yields equal outcome as well as

try to get a little bit more word out, if you pardon me saying that,

that there is not equal treatment. This includes things such as the

Special Populations Networks which Dr. Thompson has 1 of the 18

grants with Dr. Claudia McKay at the University of Maryland, as

well as several other leadership initiatives working with our cancer

information service.

Mrs. BIGGERT. Thank you.

My time has expired. I think we’ll probably have several rounds

of questions, but, unfortunately, I have to go to the floor to do

something else on government reform. So we’ve been joined by Representative Horn, who is the chairman of the Subcommittee on

Management, Information, and Technology, who will take the

chair. Thank you.

Mr. Cummings, do you want to proceed?

Mr. CUMMINGS. Thank you very much, Madam Chairlady. Unfortunately, I will have to join you on the floor shortly.

I have a bill on the floor, and I don’t know how much you all

know about that, but when you have a bill that’s your bill that you

sponsored you have to go to the floor. But I will get in as much

as I can.

You know, I guess, Dr. Bach, I’m just wondering, after you all

did your research at Sloan-Kettering and you saw this disparity,

did that change your policies at all? Did you do things any differently than what you were doing them? After all, you could clearly see from your own testimony that people were probably dying

early. And I was just curious, did you all do anything differently?

Dr. BACH. As I mentioned, we were concerned about the results

of the study and thought it offered a great opportunity for improving the patients for lung cancer. If Blacks were to receive surgery

at equal rates to White patients, we should virtually eliminate the

gap. The study that I was discussing was a national study located

in 10 geographic locations in the United States. New York wasn’t

one of them, so we do not know much about patterns of study,

about patterns per se. We know and attempt to provide the best

care to all of them.

Mr. CUMMINGS. If that were done at your hospital, do you think

you might have a similar result?

Dr. BACH. I don’t have any information about that.

Mr. CUMMINGS. Dr. Thompson, you know, one of the things we

have noticed in Baltimore is that some people tend to believe when

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they’re cut—I have heard this so many times—then when they’re

cut and they have cancer that the cancer will automatically spread

and lead to their deaths. I don’t know if any of you all have heard

that. People really believe that. And I’m just wondering, have you

heard those kind of statements and how do we deal with those

when you’re talking about addressing the issue of cancer?

Ms. THOMPSON. I have heard that anecdotally from patients.

I know when we held the forum, with hundreds of people

throughout the State coming to tell us what they wanted, people

generally wanted more information. They needed and they asked

for education so that they would know what to do, where to go for

treatment. What were the signs and symptoms?

We really need to do a better job in educating the public and educating African Americans about cancer, cancer disparities and then

what to do if they have certain symptoms. Because that’s what we

have found from research. People tend to wait. People are afraid

that if they go into certain facilities for care they might be guinea

pigs. So there is some misconceptions there.

We have also seen some misconceptions on the health care providers’ side not saying that they do not know how to reach out to

people, one. The second thing they say is, maybe African Americans are not interested in participating in research and clinical

trials. And that’s also not true because, from the research, we know

that they are interested.

So there needs to be a way that we can begin to bring together

our knowledge with the people in need and have some way of having a balance between those two. Because if we’re not able to do

that then we’re going to tend to continue to not reach people, and

this information that people have about what cancer may do if you

have surgery, this is going to happen. We really need to get good

information out to the public.

Mr. CUMMINGS. Dr. Ruffin, the results of Dr. Bach’s test, does

that surprise you with regard to that study in lung cancer?

Dr. RUFFIN. Not really. I think that one of the things that concerned me—and to comment to some extent on what Dr. Thompson

just said—is that the solution to much of this also resides in the

relationship—doctor/patient relationship.

There is no question in my mind when I talk to some of my majority friends who have had to face major decisions about their

health and had to choose in some instances between radiation and

surgery and I have asked them what was the major factor in your

deciding one way or the other and let me tell you that the major

factor was doctor/patient relationship, the fact that they had a good

relationship with their physician.

All of us sometime walk into a doctor’s office with misconceptions. But if we do not feel comfortable and if the doctor doesn’t feel

comfortable with us, if we go in there with misconceptions, we

come out with misconceptions.

So there has to be a way—and sometime when we’re talking

about health issues and you hear us talking about training, people

talk about these two issues as if there is a major separation, but

there is a close connection between when we talk about research

and when we talk about training. We have to figure out a better

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way of training our physicians so that that cultural competence

that is needed will be there.

Mr. CUMMINGS. Just one followup question.

Mr. HORN [presiding]. Please.

Mr. CUMMINGS. A few years ago when we started moving more

and more toward managed care in my district, and I’m sure in districts throughout the entire country, you can find people who—particularly elderly or middle-aged people that worked with doctors

just about all their adults lives, and then suddenly, for various reasons, maybe their doctor wasn’t on the list, and they found themselves with new doctors. And just following up on what you just

said, I imagine that could play a part too. You move. You have a

new doctor. You’re unfamiliar with that person. And that person is

telling you something is one thing, but that person who you’ve been

with for the last 25 years telling you is a whole other thing. So you

think the trust factor is very significant.

Dr. RUFFIN. There is no doubt in my mind. Those individuals sitting at the table who see patients on a regular basis may be able

to comment on that a little more, but from my experience I would

think that would be a factor.

Mr. CUMMINGS. Thank you.

Mr. HORN. Thank the gentleman.

Dr. Freeman, I would like to ask you a few questions. I gather

that you recently accepted a position as the Associate Director for

Reducing Health Disparities for the National Cancer Institute. Will

that position bring you to Bethesda full time?

Dr. FREEMAN. No, it will not. It is not a full-time position.

Mr. HORN. Have you had a chance to look at the proposed budget

for the National Cancer Institute and what about the aid that they

can provide to this very question? What is your feeling on that?

Dr. FREEMAN. My job started yesterday.

Mr. HORN. I expect you to have all the problems solved by tomorrow.

Dr. FREEMAN. I have a general feeling, in speaking to Rick

Klausner who hired me into this position, that he considers this a

very, very important issue and will give the fullest support.

It’s going to take a while, I think, to determine how money

should be spent. But I’m looking at four different things at this

point.

No. 1, I think we have to have a research division that will do

research related to these issues—not just to special population research that is going on now but larger than that.

I think, No. 2, we need to have a communications division, because culturally targeted communication is so critical to preventing

disease and to instructing people how and when they should come

in for a certain test.

Third, I think that, ultimately, a huge effect will come related to

creating health care related policies in our Nation which are compatible with the problems that we must be facing. So, for example,

if we’re discovering things in our discovery system but we’re not delivering them appropriately to all of our population, this is a policy

issue. So we’re going to have a division that is going to be kind of

a think tank division to deal with policy so you can be well instructed about the substance of the problems that we face.

77

Mr. HORN. This is a good time for you to get your proposals in,

because September is when all government agencies have money to

reprogram. And in the going out of this fiscal year, it’s a good opportunity to start pilot projects and get that money so you can use

it. And, as I remember, the National Institutes of Health overall

can move money around between some of the Institutes. Also, within the National Cancer Institute I would assume they could move

money around, also. We shouldn’t have to wait a year for you to

have what you bring to the table. We shouldn’t have to do that. So

we’ll need to get moving now.

Dr. FREEMAN. Thank you.

Mr. HORN. What specific programs do you think are needed to reduce these disparities? When I was on the Civil Rights Commission, we had studies on this throughout the country; and that was

30 years ago.

Dr. FREEMAN. Well, one question that we have is to try to determine what the precise variables are that cause disparity. We have

groups according to race and culture, but we do not know enough

about what the precise variables are that cause people not to do

as well.

For example, how much of this is related to lack of knowledge

and resources? How much of it is related to the life-style factors

that we all live within that we call culture. How much of it is related to what we’re talking about here today, the matters of social injustice? How can we separate, disentangle the meaning of race as

we use it in society from the meaning of class and culture? These

are some of the early questions.

Another question is, what about parts of the country that we already know how to identify where people are dying at a higher

rate, geographically and culturally delineated areas of excess mortality.

In 1989, I published a paper in the New England Journal that

showed, for example, that Black Americans, particularly males in

Harlem, have less of a chance of reaching age 65 than males growing up in Bangladesh, which is a third-world country. We need to

look and learn from the community of America what we should do

for the most distressed communities; and this is one of the areas,

lines of research that I will take.

Mr. HORN. What about the research of minorities in the military

where they move around and they aren’t in a ghetto here in the

domestic United States? Is that worthy of research?

Dr. FREEMAN. It is. There is a recent paper, and there is more

than one recent one, in May, which looked at the veterans hospital—I mean, the people in the service, women who developed cervical cancer who were the wives or perhaps they were soldiers

themselves. And when they have looked at the results they found,

as Dr. Brawley has said, that when people of any race are treated

with the same treatment at the same states of disease the outcome

is the same. So our military model is one perhaps we need to look

at very closely because, apparently, the access is the same for people who are in the Army or Navy, and so America can learn. So

we need to look at those military models.

Mr. HORN. Obviously, one’s socioeconomic status does have something to do with this.

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Dr. FREEMAN. May I just point out this, that in a study which

I authored—and I’ll give you this to keep—The Effect of Poverty

Related to Race, a paper published in 1989 based on an American

Cancer Society’s 2-year study trying to understand the effect of

poverty and on cancer outcome. We concluded that when one corrects for socioeconomic status the disparities in cancer outcome between Blacks and Whites are to a large extent but not completely

corrected. So poverty with its effect on living conditions, lack of

education, nutrition, access to preventative care and life-style factors has a major influence on these disparities, but poverty is a

universal condition. It effects all people who are poor.

Mr. HORN. I would think in some cases, though, that it isn’t just

the socioeconomic status. As you mentioned, you want to call it cultural, the food they have eaten as little kids they might still like,

and we know fats and other things certainly do not help matters.

Dr. FREEMAN. That’s true. And before you came in we spoke of

the meaning of culture, the life-style, attitudes and behavior of

groups of people who have similar life-styles. The Seventh-Day Adventists, to give you an example, have the lowest cancer death rate

in America and the longest lifespan. Even when they are poor they

don’t smoke cigarettes, they eat vegetables, and they do not drink

alcohol. So there is something about life-style that is very critically

important across race.

Mr. HORN. Well, thank you very much, Dr. Freeman.

Let’s ask Dr. Ruffin a question or two. What’s the ratio of minorities going into medical and nursing schools and how is that different from the White population?

Dr. RUFFIN. I don’t have those statistics before me, but I could

provide those to you for the record.

Mr. HORN. Without objection.

Dr. RUFFIN. Pardon me?

Mr. HORN. Without objection, it is put in the record at this point.

Dr. RUFFIN. Yes.

But let me answer it this way. Those numbers are very, very low

in terms of number of minorities that are going into those professions; and we have many, many programs at the National Institutes of Health that we put in place to try and get those numbers

up.

Mr. HORN. Do we know that the cancer treatments differ for

Asian Americans, Hispanics, Native Americans, Native Hawaiians,

Native Alaskans? What do we see there?

Dr. RUFFIN. I think we will see some of these across the board

when we look at some of the statistics, particularly when we start

examining different groups.

For example, if we were looking at Asian Americans, I am aware

of the fact that, as it relates to cancer in general, that, for example—I think Dr. Freeman may know a little better the current statistics on this, but that there is an increase of colon cancer among

Japanese Americans when they leave Japan and come to the

United States.

By the same token, as I understand it, stomach cancer, for example, which is relatively high in Japan, but when those individuals

come to the United States there is a decrease in stomach cancer.

So that suggests to me that there are environmental factors, too,

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that must be examined as we examine these broad scenarios of

health outcomes.

Mr. HORN. Well, I stepped beyond my minutes; and I now yield

to the gentleman from Maryland, Mr. Cummings.

Mr. CUMMINGS. Thank you very much, Mr. Chairman.

Dr. Huerta, I just want to know what your thoughts are on the

impact of including funding for cultural competency in medical education. I think Representatives Jessie Jackson, Jr., and Bennie

Thompson talked about that, and I was just curious as to your feelings on how would that effect the population you serve.

Dr. HUERTA. Thanks for the question, Mr. Cummings. It would

tremendously effect the quality of service we can provide to our patients.

As an anecdote, I had a patient with pancreatic cancer some

years ago. He used to be from the—he was from the Dominican Republic. So I diagnosed the cancer. And the next day he came with

11 members of his family. But the amazing thing is that when the

family came to see me they didn’t let him get inside my room. The

family wanted to talk to me before that, and they pleaded with me

not to tell him the truth.

So I’m from Peru. I’m recently arrived to this country. In Peru,

if you tell a patient that the patient has cancer, you are considered

an inhuman doctor. That’s culture. That’s incomprehensible for

many Americans. But that is culture.

So if a doctor here doesn’t know that, subtle changes in the culture of people, how can we treat with quality an Asian American

person, a Latino person, a middle Eastern person or an African

American person? We all have different qualities.

And medical schools now they lack this kind of training. I think

we have to allow our medical students to open their eyes, open

their minds that this society of ours is becoming increasingly multicultural. Medicine reflects society, in my opinion. Quality of care is

not reflecting those changes in our demographics.

Mr. CUMMINGS. Now, Dr. Brawley, you know, when you think

about this whole idea, I keep going back to Dr. Bach’s study where

you have those 65 people, people 65 and older. Am I right, Dr.

Brawley?

Dr. BRAWLEY. Yes.

Mr. CUMMINGS. And for some of them to get surgery and others

not, and apparently surgery does make a difference, I mean, what

conclusions did you come to, if any, in regard to that?

Dr. BRAWLEY. One can look at virtually every major cancer. I

personally wrote the literature on prostate cancer and find the

same finding that Dr. Bach had.

Breast cancer, which I’ve become very interested in, is a good example of looking at this. In the military, by the way, Black women

have a much lower breast cancer mortality then Black women in

the United States as a whole. Partially because of cultural differences between Black women who were either married to a soldier or in service themselves, partially because they have access to

care, they have access to convenient care, and they have access to

good care, which is the other factor.

There are also some hospitals like Henry Ford Hospital or the

University of Chicago that published their series over the last 20

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or 30 years and find that Blacks and Whites treated at those places

have equal outcome if you look at them in 5, 10 and 15 years. This

is especially important because, in 1980, Black and White women

had the same death rate in the United States. But since 1980 the

death rate has gotten wider and wider, Blacks going up and Whites

going down.

Ultimately, how people get quality—how people get their care,

care in county hospitals or in other facilities where sometimes perhaps they say, no, I don’t want the treatment; other times, they

were denied the treatment.

I have actually been to one hospital in the Midwest—it’s a county

hospital. They are giving radiation off a cobalt machine which has

been obsolete for 30 years. This is where people who are poor go

to get their medical care. To them, a mastectomy is the only treatment for breast cancer. Lumpectomy and radiation is not an option

because that machine can’t give the powerful radiation you need

for that care.

Sometimes it’s because people have to wait in line or wait all day

to see a doctor. They just get fed up, and they leave. I actually

found this out because we’ve done studies at the NCI to show that

there are areas in the country where 1 out of 20 Black women diagnosed with breast cancer did not get treated. They had enough access to care that they got a biopsy of the breast to be diagnosed,

but they ultimately did not get the tumor removed. Now that is research that was completed in 1890 that is not being applied in the

year 2000.

Mr. CUMMINGS. Dr. Thompson, one other question, have you seen

situations with people, because of age, who just want to give up?

They have—find out they have cancer, and they just want to give

up. They just do not want to continue, although doctors want to say

otherwise.

Ms. THOMPSON. I have a close friend whose mother just died of

cancer, and they just gave up because they don’t want to go

through the treatment. That was a choice. So that’s one person

that I know of personally who made that choice of not getting care

because they didn’t want to live with the consequences of having

to go through a certain type of surgery.

I’m sure other people have had those experiences, too, where you

give information to a patient and tell them what they need to do

in order to survive, and they make that choice.

Mr. CUMMINGS. Thank you, Mr. Chairman.

I see Ms. Norton is here, but I have a few other questions. Let

me ask you this. I won’t be long.

When we look, Dr. Ruffin, at this whole question of elevating the

office, the research office, do you think it will have the kind of—

you heard the testimony of Congressmen Jackson and Thompson,

do you think it will have the kind of impact that they’re hoping for,

in other words, if it is elevated? And what differences would you

project?

Dr. RUFFIN. I think so, and I think for two reasons. One is that

it would be the first time that the National Institutes of Health

would attempt to put in place a strategic plan; and that strategic

plan would be a plan that is trans-NIH, which means that it involves all of the institutes and centers, not isolated. So the next

81

time, perhaps, when you hold a hearing like this, you will have all

of NIH sitting at this table at one time to defend one document

that we have put together to say this is how we’re going to do it.

Second, as you know, anybody who has worked with a strategic

plan, a strategic plan brings with it another component. That component is an evaluation, something to hold the agency and those

individuals who are responsible for that strategic plan accountable.

So I think the fact that there would be a strategic plan and accountability attached to that plan, that results would surely come.

Mr. CUMMINGS. Finally, Dr. Bach, just going back to the injury

study, because it was one of the major factors that brings us here

today. Do you think that—I mean, when you look at those differences with regard to the folks with the lung cancer, you would

believe that that’s going on all over the country. You would have

those kind of findings, if you were to guess. First of all, how did

you come up with the 10 sites that you came up with?

Dr. BACH. The last question I’ll try to answer first.

The 10 sites constitute the National Cancer Institute’s ongoing

cancer surveillance network called Surveillance Epidemiology and

End Results, nicknamed SEER. It’s the ongoing data base we use

for virtually all cancer statistics, and many of the statistics you’ve

heard cited here are from that data base. So that sample, although

it’s not a random sample, constitutes a cross-section of the United

States.

I would say, on average, the results that we’ve found likely would

hold true in most geographic regions of the United States that we

did not sample. And although I don’t have the numbers in front of

me, I can tell you that we looked in individual geographic regions

that are captured by that data base, and we found this: consistent

findings that Black patients were less likely than White to undergo

surgery.

Mr. CUMMINGS. The thing that concerns me more personally

than anything else is, when I look at the obituary page of the Baltimore Sun, what I see are a lot of African Americans dying from

cancer from 35 to 55 and/or heart disease. I started looking at the

obituary page a few years ago, I think, after my 35th birthday so

I could value life a little bit more every day.

But in your study you’re dealing with 65 years and older. Would

it change for that population, say the 35 to 55, and would they

make perhaps different decisions? Because one of the factors I

guess that comes into play is, if somebody is going to get surgery,

they have to look at the shape of their body, what kind of health— whether they’re healthy and whether they can withstand surgery.

Because I’m not a doctor, but I understand surgery can have an impact on your body. So I’m just wondering if that would change

these figures a bit, you think?

Dr. BACH. As I mentioned, we didn’t look directly at the younger

populations. We did that for a special reason, which is that we

wanted to control—what we use in the epidemiologic lingo—control

for insurance status. In other words, we wanted to be sure if you

weren’t having the surgery it wasn’t because you were uninsured.

In terms of the comment of the risk of surgery and what it can

have on your body, we were able, because of the structure of this

data base that’s maintained by the NCI, able to ascertain whether

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or not people were too sick to have surgery. We used the term ‘‘comorbidity’’ to describe that.

What I can tell you is when we looked at Black and White patients who had very low level, medium levels and high levels of comorbidity comparing within those different groups in every case

Black patients were less likely to have surgery than Whites.

To address the question you began this with, as I said, we have

examined this data, but there was a study published approximately

6 months before ours which examined the rate of surgery for Black

patients of all ages using the same data base but without the benefit of the insurance information we had; and in that study also it

was shown that the younger Black Americans were less likely than

the younger White Americans to have surgery.

Mr. CUMMINGS. Thank you very much, Mr. Chairman.

Mr. HORN. We thank you for all your good questions.

We now yield 5 minutes to the gentlewoman from the District of

Columbia, Ms. Norton.

Ms. NORTON. I thank you, Mr. Chairman.

I regret very much that I was not able to attend the entire hearing as this is a very special interest of mine.

I am very hopeful, I must say, about cancer. Only a few years

ago I only—literally, I don’t think people were talking about people

living with cancer. It’s almost like AIDS. People now live with

AIDS. People live with cancer.

The elevation of the NIH Office of Research on Minority Concerns to an NIH center is, it seems to me, minimally necessary if

we’re serious about tackling these disparities. I am told that if this

is not done by Congress it may be done administratively, that there

may be the authority to do so. I certainly hope that does not become necessary. I think it would send a very bad message if somehow, given these disparities, we were not able to get this done

through the Congress. And I’m certain that everyone in the Congress understands and is sympathetic with the need here.

I would just like to say a word, since I did not hear the testimony, about my major concern, which is prevention. We know in

some instances there is more cancer; we know in some instances

there is less cancer. We are convinced that some of these are not

human differences but ethnic differences. Until we find out, we will

not have a good way to get at these disparities. There will be a lot

of continuing good guesswork on the part of physician and health

care professionals. I think we owe the minority community better

than that.

I am particularly interested that there is less breast cancer

among African American women, for example, but more cancer

death; and now everyone goes to the obvious, that is—of course,

that there is less access to health care. But I would say to you I

think we have an equal obligation to go to prevention here if there

are fewer cases of breast cancer or if they occur less often. Then

it seems to me we have a better chance of preventing breast cancer

among African Americans than among Whites.

One of the reasons we don’t do so is because they don’t have access to preventative care. But another reason is that the preventatives that are now becoming known to middle-class people and eduVerDate 11-MAY-2000 09:16 Aug 06, 2001 Jkt 000000 PO 00000 Frm 00086 Fmt 6633 Sfmt 6633 C:\DOCS\73838.TXT HGOVREF1 PsN: HGOVREF1
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cated people are not wide enough known in the minority communities.

I have a bill that I think is going to become part of an appropriation on obesity that is going to be passed as a part of the LaborHHS appropriation. That marks the first time that the Congress

will come forward with a large appropriation to combat obesity in

the country.

Now that is an across-the-board problem in this country, every

age group from the littlest children to the oldest people and every

ethnic group. But I have to tell you that, by sight, I see many people on the street in my community that are headed for all kinds

of problems on the basis of obesity, and we certainly think that

cancer is one of them. We can talk about all the health care access

we want to, but I am a whole lot less interested in pouring money

at health care professionals to try to cure something than I am preventing a terrible disease like cancer.

I would like to see a lot more emphasis put on explaining to

young people the link between all this fat food and all this stuff

that would lure anybody on the television, all this lack of exercise

and where it all ends up in the final analysis.

I did not hear testimony—I was not privileged to hear your testimony, so I do not know whether you were able to discuss prevention, but I would, if I’m not causing you to be redundant, like to

hear what you have to say about ordinary preventative matters,

not simply being able to go to the doctor to get your annual treatment. If we’re going to wait for that, we’re going to wait for a long

time for Blacks and Hispanics to be equal.

I want to get straight through that and get the message through

that cancer is preventable, just like a lot of other diseases are preventable, but not if you’re going to eat yourself to death until you’re

50 and then expect that everything is going to come out all right

because your grandma lived to be 95. Somehow we have to break

through the folklore and the mythologies of our respective communities, and I wonder what the medical and health care people have

to say about prevention as a way to go at cancer.

Dr. HUERTA. I would like to address your question with a practical example of my work at the Washington Hospital Center here

in Washington, DC.

Eleven years ago, I started a radio show. It started on December

4, 1989, and that show has been on the air every single day since

then until today for 11 years. It’s broadcast three times a day.

In the 5th year of doing this radio show, I opened a clinic that

has a theme that says, this place is only for healthy people. If

you’re sick, you go see your primary care doctor. If you want to talk

about cancer prevention, you want to get screening, come here.

The administrators in the hospital told me, good luck. You want

healthy people, No. 1, and then you want them to pay out of pocket. Because I knew my community was uninsured so I put a very

low fee. In 3 weeks, we were booked for 6 months; and so far we

have seen 7,500 people crossing our doors.

Eighty-five percent of these people, they are completely healthy,

asymptomatic. Ninety percent are the Latinos. They are the people

cleaning your houses, gardeners, waiters. And 90 percent of the

people have less than a high school education. Why is that? BeVerDate 11-MAY-2000 09:16 Aug 06, 2001 Jkt 000000 PO 00000 Frm 00087 Fmt 6633 Sfmt 6633 C:\DOCS\73838.TXT HGOVREF1 PsN: HGOVREF1
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cause the message has crossed their minds every single day three

times a day for 11 years.

This is one side of the coin. Preventative health that you’re asking for can be solved using the media with four premises.

No. 1, the message needs to be consistent. Consistent in my opinion means every single day. Can you imagine your 11 o’clock news

without sports? Probably not. But there are many 11 o’clock news

without health.

No. 2, the education needs to be comprehensive. There is no

point in talking only about breast cancer or only about prostate

cancer. It needs to be about obesity, cigarette smoking, seat belts,

maternity health—the whole comprehensive health education.

No. 3, we have to use the channels that the community uses.

Some people love radio; others like television. People are on the

internet already. Some people like to read. We have to produce materials for all of them every day.

No. 4, messages needs to be delivered by someone the community

trusts and identifies with. So with this moral that we have been

able to attract all of these thousands of people for preventive care.

The other side of the coin, in my hospital I do ask—and this is

new data that I will publish. I asked my cancer control person in

the hospital to please get me a list of all the advanced cancers that

went to the hospital over the last 5 years. I was interested in

breast cancer, prostate cancer, cervical cancer, and colorectal cancer—preventable, detectable. As you know, she came up with a list

of 200 people. All of them, 95 percent of them, lived in the zip code

20010 and 20011 which all cross my hospital. Stages three and four

advanced, incurable cancers.

Guess what? Ninety-eight percent of these people are fully insured—Medicare, Medicaid, commercial health insurance. That’s

the other side of the coin. Why are these people waiting at their

homes letting their tumors grow?

So this is the kind of thing that I meant when I said that our

medical establishment is much more interested in finding the molecules, the genes, about the lady’s tumor. I think we should be interested also in the lady herself. Why is this lady waiting so long?

Ms. NORTON. Thank you very much. I must say that was itself

a lesson in prevention.

Thank you, Mr. Chairman.

Mr. HORN. Well, thank you for asking the question.

I have seen various academic relationships with working hospitals where sometimes the person is simply a case number when

the students come in, instead of saying, good morning, Joe, or good

morning, Susie, how are you doing today? So I think we have that

breakdown that is needed in medical school that was mentioned.

What else would you have the—we don’t have interns anymore, we

have residents. But while they’re in medical school, what do you

think they should be taught to be sensitive to patients especially

of different races and ethnicity? Yes.

Dr. HUERTA. Thank you for your question, Mr. Horn.

I think they should be sent to—obligatory to inner-cities, to community clinics that serve multicultural populations. They should

not graduate from medical school if they don’t have that kind of

training. I would do that.

85

I have students in my little clinic, they are 2nd year and 1st year

medical students, so they haven’t really gone through the whole

medical studies; and they, when they have my Latino patients,

when they have my poor African American patients, they really— at the beginning, I can see their eyes. They are kind of seeing different people, different cultures. But at the end of the rotation,

which is 3 months, they can talk to them. I can see their eyes.

They were lighting because they have learned something, how to

see different kind of cultures.

I would be very tough. No graduation if you do not have training

in treating multicultural people.

Mr. HORN. I think that is an excellent suggestion. As a former

university president, that’s what I had the School of Education do.

Don’t put them out in the suburbs. Put them out where you will

meet real people in the inner-cities.

Dr. Bach, this essentially goes to you. Do individuals in different

backgrounds or races react differently to chemotherapy and radiation treatment? And do some fare better under those chemotherapy and radiation treatments?

Dr. BACH. I—actually, I may have to pass this question to one

of the oncologists sitting to our right.

Our study looked at a large population of people using administrative claims data. I can tell you that my impression as a clinician—I’m a practicing pulmonologist at a cancer center—is that

people of all ethnicities tend to withstand or benefit from treatment

to an equal extent, regardless of their ethnicity.

It may be that some of the oncologists on my right can further

fill this in.

Dr. BRAWLEY. If I may, sir, as a medical oncologist, discuss this

sort of thing, there is really no difference among the races in terms

of chemotherapy or radiation. There are differences in terms of

older people versus younger people, but not between Blacks and

Whites or Hispanics.

There will sometimes, however, be cultural differences in people

complaining. Certain cultures, for example, are much more accepting of pain and not voicing it, for example.

Mr. HORN. Dr. Bach, in your article on early stage cancer you

note about African-American patients not receiving the more effective treatment of surgical resection.

As part of this study, did you talk to the doctors? If not, have

there been any physician interviews to determine if racial bias is

a problem in medicine?

Dr. BACH. In response to your first question, our study was

based, as you mentioned, on administrative claims data, so we

were not able to either interview the patients involved or the physicians.

The primary goal of the study was to get a population-based estimate of the extent to which both disparities in treatment existed

and their impact on survival.

By taking that approach, we had a tradeoff. We believed that our

estimates are accurate, but we lost the ability to get a good sense

of why it was that there were treatment differences.

I should tell you, there is a great deal of research into the doctorpatient relationship that is attempting to explore this issue. As I

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mentioned a little earlier, the National Cancer Institute has supported our research or continued to support our research into this

area. We hope that part of the outgrowth of this finding will be better information based on patient and physician interviews.

Mr. HORN. Thank you for that.

Are there any other comments any of you would like to make?

My next question is to Dr. Thompson.

Do you have some thoughts on this, Dr. Thompson?

Dr. THOMPSON. On the question?

Mr. HORN. On that question, right. I have a different one for you.

Dr. THOMPSON. No, sir.

Mr. HORN. There was a news announcement over the weekend

that a new recommendation is expected on when to begin PSA testing for all men, and in particular, for African-American men.

Would you explain why this is so vital to catch it early, and if

so, well, a lot of people don’t take annual physicals seriously until

maybe they are about 30 or 35 and they sense that they are aging

rapidly. So what would your advice be?

Dr. THOMPSON. One of the things we know from the literature is

prostate cancer, based on what we know, is a little bit more lethal

in African-American males.

I know when I talk with people about the problem of prostate

cancer, many men are not aware of the issue. They don’t get PSA

testing, they don’t get rectal exams.

So we really do need to figure out a way to get the message out

as early as possible and really teach early screening and treatment

at an earlier age for all men dealing with issues of testicular cancer, prostate cancer, all of those, just to make them aware of the

problem like we do with women with breast self-exams, and the

whole idea of getting early treatment for breast cancer; educating

the public, making them aware of the problem, telling them what

to do, and encouraging them to talk with their doctor about getting

the testing and getting the screening.

Mr. HORN. Well, thank you.

Dr. Huerta, I believe earlier in this month I know now thousands

of people looked at the PBS series on end-of-life care.

Is there difference in the preferences and access to hospice care

based on ethnicity?

Dr. HUERTA. The question is if there is a difference between people that choose different hospitals based on their ethnicity?

Mr. HORN. On hospice care based on ethnicity.

Dr. HUERTA. Yes, there are some differences. There are some cultures, for example, the Latino or Hispanic culture, they do not like

to put their elders in hospices or nursing homes. They believe that

they are ‘‘dumping their families’’ and they are not taking care of

them. The same thing happens with Asian-Americans.

There are definitely differences in cultures regarding the use of

these kinds of health facilities.

Mr. HORN. Thank you. I am going to close this out and thank the

staff, but before doing that, is there something that has come to

your mind that a colleague has said that you would like to comment on?

We will start with you, Dr. Ruffin. Do you have anything to add

to the record?

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Dr. RUFFIN. Most of the questions have centered around, to some

extent, the elevation of the Office of Research on Minority Health

to center status. Much of Mr. Jackson’s testimony also had much

to do with that same subject.

I think the only thing that I would say for the record is that it

be clearly understood that this is not something new for the National Institutes of Health. In many instances where issues have

come to the forefront and where compelling data warrant it, we

have responded in a similar manner.

We need only look to the Genome Institute now as guidance to

that. We will see that a few years ago we were talking about a genome center which was elevated to institute status.

Just last year, alternative medicine became of interest to us in

this country. Alternative Medicine, which was an office just like the

office that I now run, is now a center. Nursing was a center, which

is now an institute.

So in most instances at the National Institutes of Health when

we recognize the importance of an issue, we have elevated that

issue in many instances by elevating the status of that unit.

So I just wanted to make it clear that this is not groundbreaking.

This is not a new idea for us, but a model we have followed with

many of the other entities in the National Institutes of Health.

Mr. HORN. Thank you.

Dr. Freeman, anything to add?

Dr. FREEMAN. Yes, Congressman, three points related to the discussion on prevention raised by Congresswoman Norton.

Primary prevention is believed to be able to prevent at least twothirds of cancers. A third of cancers are due to smoking, another

third are related to diet, and some others are due to exposure to

the sun.

Then there is secondary prevention. For example, it is believed,

although currently 55,000 American people die of colon cancer

every year, disproportionately poor and Black, it is believed that we

can prevent—most or at least half of those cancers can be prevented by what is called secondary prevention.

If everyone at a certain age, perhaps 50 years old, had a total

colonoscopy, we could make a big dent into colon cancer deaths,

this is an important application of secondary prevention.

No woman should die of cervical cancer. We still have 5,000

deaths a year. We can diagnose and treat that cancer before it becomes invasive.

Breast cancer is now frequently being surgically removed on at

the point before it becomes invasive.

So this is one set of things. Prevention is critical. I appreciate

your comments.

The second thing is that not only are Dr. Bach’s findings important in the lung, but over the last 7 years since 1993 we have had

about a dozen peer-reviewed papers that show racial differences in

the treatment of cancer and other diseases, and in the treatment

of pain.

There are two studies that show that Hispanic and AfricanAmerican people in emergency rooms who present with long bone

fractures, which are very painful, are less likely to be treated with

pain medications compared to others.

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There is another study from Harvard that has shown that Black

American people are less likely to be referred for renal transplantation when they are in renal failure, at the same economic status

and insurance.

There are studies that show that Black Americans are less likely

to be worked up fully for symptoms that might mean they have

life-threatening coronary heart disease.

So I want to put it in perspective that we are not only talking

about one problem, we are talking about a societal set of issues

that affect Black Americans.

A final thing, I think that in prostate cancer—you raise the question about the PSA. I have two concerns. No. 1 is that we don’t

have all of the scientific answers as to which prostate cancer will

progress and which will remain dormant, so the question of the

treatment—there is a lively debate about how to treat this disease:

Radical prostatectomy versus radiation in its two forms and

watchfull and waiting.

We had a mayor in New York who waited about 3 months after

diagnosis and before treatment because he had to think it over.

What happens in poor communities, poor Black communities, when

there is no counseling? The men in these communities don’t know

these options, they are not explained. So if we bring in screening

in a poor community, we should bring in counseling along with it.

Mr. HORN. Thank you, Dr. Freeman.

Dr. Brawley.

Dr. BRAWLEY. Thank you for the opportunity, sir.

Dr. Freeman has been wonderful in explaining that this problem

is not just in cancer, and I can focus directly on cancer and tell you

that there are studies in the literature in colon, breast, prostate,

cervix, and lung cancer that show that there are disparities in

treatment.

There are also studies in the literature that show that equal

treatment yields equal outcome in all of those cancers, sometimes

by looking at a specific hospital that for some reason or another is

actually able to offer that good therapy, and other times looking at

systems like the military.

What it boils down to, to me, is not just access to care, which is

what we frequently worry about when talking about poor people,

but also susceptibility to care.

Nancy Breen at the National Cancer Institute, for example, published a study that showed that one out of five Black women with

breast cancer gets less than optimal care. They get care, but less

than optimal care. It is actually one out of eight White women who

get less than optimal care.

So where people get their care and is that care optimal, is that

care acceptable, are real issues.

I cannot overstress the fact that there are hospitals where people

actually go and start getting care and literally walk away because

of inconvenience. Sometimes it is because of the faculty being not

sensitive. Sometimes it is because of basic issues of having to wait

for 4 or 6 hours to see a physician.

Mr. HORN. Thank you.

Dr. Bach, any last thoughts?

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Dr. BACH. I only want to thank you for considering the results

of our study.

I would say that we certainly hope that it leads to progress and

improved treatment for people with lung cancer, as well as the

other conditions that have been mentioned.

Mr. HORN. Thank you.

Dr. Thompson, any thoughts?

Dr. THOMPSON. Sure. Thank you.

I just wanted to make a comment about the professional nursing.

Someone made a comment earlier about the number of AfricanAmerican nurses. We only have 4 percent of nurses who are African-American in this country, so we really do need to figure out a

way to increase that number.

The other comment I wanted to make is this whole idea of sustaining programs that work. There are many studies that have

been conducted and demonstration pilot programs that have been

placed in communities, and the funding—they only go on as long

as the funding is available.

We know things work and that it is having an impact on reaching people and reducing problems, especially in relationship to prevention, so we really need to figure out better ways to take those

programs to scale and sustain them, instead of the funding that

currently happens only looking at a demonstration for 3 to 5 years.

Mr. HORN. Thank you.

Dr. Huerta, your last words?

Dr. HUERTA. Thank you. I would like to talk about prevention

that Ms. Norton talked about.

There is a wonderful program from CDC, for example, called the

Breast and Cervical Cancer Early Detection Program which I am

employed to do here in the District. There is a wonderful program

called WISH, Wish Women Into Staying Healthy, which is a CDC

program. I am a member of that.

But you know what, we call women, we lure women, ‘‘Come here,

please, it is for free. For your mammogram, your Pap smear, come

here.’’ Well, I have seen 6,000 Latino women and 200 AfricanAmerican women and I have found already three cancers among

the African-American women, but that is not the point. The point

is that this program has no treatment component.

So when I diagnose these cancers, I am between a sword and the

wall, because on one side my patient is telling me, ‘‘Why did you

call me here?’’ And on the other side, my hospital is saying, ‘‘Dr.

Huerta, we have to pay for this? Are you doing this kind of business to us?’’

In other words, I am being punished for being a good citizen.

Mr. HORN. That is a sad situation, to say the least.

I want to thank each of you. It has been a very good hearing in

terms of getting things on the record.

Let me thank the staff for both the majority and the minority.

On my left, your right, is Beth Clay, the majority counsel. Back of

her is T.J. Lightle, the legislative aide.

Our clerks for the majority are Bob Briggs and Mike Canty, and

then for the minority counsel it is Sarah Despres, the minority legislative aide is Tania Shand, and the minority clerk is Jean Gosa,

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and our faithful court reporters are Colleen Lynch and Leanne

Dotson.

We thank you all.

With that, we are adjourned.

[Whereupon, at 3:15 p.m., the committee was adjourned.]

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