[House Hearing, 106 Congress]
[From the U.S. Government Printing Office]




                               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

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


73-838                     WASHINGTON : 2001

 For sale by the Superintendent of Documents, U.S. Government Printing 
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                     DAN BURTON, Indiana, Chairman
BENJAMIN A. GILMAN, New York         HENRY A. WAXMAN, California
CONSTANCE A. MORELLA, Maryland       TOM LANTOS, California
CHRISTOPHER SHAYS, Connecticut       ROBERT E. WISE, Jr., West Virginia
JOHN M. McHUGH, New York             EDOLPHUS TOWNS, New York
STEPHEN HORN, California             PAUL E. KANJORSKI, Pennsylvania
JOHN L. MICA, Florida                PATSY T. MINK, Hawaii
THOMAS M. DAVIS, Virginia            CAROLYN B. MALONEY, New York
DAVID M. McINTOSH, Indiana           ELEANOR HOLMES NORTON, Washington, 
MARK E. SOUDER, Indiana                  DC
JOE SCARBOROUGH, Florida             CHAKA FATTAH, Pennsylvania
    Carolina                         ROD R. BLAGOJEVICH, Illinois
BOB BARR, Georgia                    DANNY K. DAVIS, Illinois
DAN MILLER, Florida                  JOHN F. TIERNEY, Massachusetts
ASA HUTCHINSON, Arkansas             JIM TURNER, Texas
LEE TERRY, Nebraska                  THOMAS H. ALLEN, Maine
JUDY BIGGERT, Illinois               HAROLD E. FORD, Jr., Tennessee
GREG WALDEN, Oregon                  JANICE D. SCHAKOWSKY, Illinois
DOUG OSE, California                             ------
PAUL RYAN, Wisconsin                 BERNARD SANDERS, Vermont 
HELEN CHENOWETH-HAGE, Idaho              (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

                            C O N T E N T S

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



                       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 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 
    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 
    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 
    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 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 
    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 
    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.


    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 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 Labor-HHS-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 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 
    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 


    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 support 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 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 
    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 
    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.
    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 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 
    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.
    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 
    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.

                 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 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 
    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 
    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 understand what it is about various culture 
of our society that may lead to excess, incidence and sometimes 
    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 
    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 
    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 
    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 
    [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 
    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 
    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.
    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, 
    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.
    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 
    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 
    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.
    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 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 
    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 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 
    Dr. Freeman. No, it will not. It is not a full-time 
    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 
    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 
    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.
    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 
    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.
    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, 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 
    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 multi-cultural. Medicine reflects society, in my 
opinion. Quality of care is not reflecting those changes in our 
    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 
    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 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 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 
    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 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 
    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 educated 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 Labor-HHS 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? Because 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 
    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.
    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 
    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 
    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 
    I should tell you, there is a great deal of research into 
the doctor-patient relationship that is attempting to explore 
this issue. As I 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 
    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 
    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 
    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 
    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-
    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?
    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 
    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 two-thirds 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 
    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 
    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 African-
American 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.
    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?
    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 
    Someone made a comment earlier about the number of African-
American 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 African-American 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 
    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 
    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, 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.]