[House Hearing, 106 Congress]
[From the U.S. Government Publishing Office]
ETHNIC MINORITY DISPARITIES IN CANCER TREATMENT: WHY THE UNEQUAL
BURDEN?
=======================================================================
HEARING
before the
COMMITTEE ON
GOVERNMENT REFORM
HOUSE OF REPRESENTATIVES
ONE HUNDRED SIXTH CONGRESS
SECOND SESSION
__________
SEPTEMBER 25, 2000
__________
Serial No. 106-247
__________
Printed for the use of the Committee on Government Reform
Available via the World Wide Web: http://www.gpo.gov/congress/house
http://www.house.gov/reform
__________
U.S. GOVERNMENT PRINTING OFFICE
73-838 WASHINGTON : 2001
_______________________________________________________________________
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COMMITTEE ON GOVERNMENT REFORM
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
ILEANA ROS-LEHTINEN, Florida MAJOR R. OWENS, New York
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
STEVEN C. LaTOURETTE, Ohio ELIJAH E. CUMMINGS, Maryland
MARSHALL ``MARK'' SANFORD, South DENNIS J. KUCINICH, Ohio
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)
DAVID VITTER, Louisiana
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
----------
Page
Hearing held on September 25, 2000............................... 1
Statement of:
Freeman, Harold P., M.D., Associate Director for Reducing
Health Disparities, National Cancer Institute, Bethesda,
MD, accompanied by John Ruffin, Associate Director, Office
of Research on Minority Health, National Institutes of
Health, Bethesda, MD, and Otis Brawley, M.D., Director,
Office of Special Populations, National Cancer Institute,
Bethesda, MD; Peter B. Bach, M.D., Memorial Sloan-Kettering
Cancer Center, Health Outcomes Research Group, New York,
NY; Linda S. Thompson, DrPH, RN, Center for Community
Partnerships for Children & Families, Baltimore, MD,
accompanied by Keith Plowden, Ph.D., RN, assistant
professor; and Elmer Huerta, M.D., American Cancer Society. 33
Jackson, Hon. Jesse L., Jr., a Representative in Congress
from the State of Illinois................................. 12
Thompson, Hon. Bennie G., a Representative in Congress from
the State of Mississippi................................... 25
Letters, statements, etc., submitted for the record by:
Bach, Peter B., M.D., Memorial Sloan-Kettering Cancer Center,
Health Outcomes Research Group, New York, NY, prepared
statement of............................................... 43
Biggert, Hon. Judy, a Representative in Congress from the
State of Illinois, prepared statement of................... 3
Freeman, Harold P., M.D., Associate Director for Reducing
Health Disparities, National Cancer Institute, Bethesda,
MD, prepared statement of.................................. 36
Huerta, Elmer, M.D., American Cancer Society, prepared
statement of............................................... 64
Jackson, Hon. Jesse L., Jr., a Representative in Congress
from the State of Illinois, prepared statement of.......... 15
Thompson, Hon. Bennie G., a Representative in Congress from
the State of Mississippi, prepared statement of............ 27
Thompson, Linda S., DrPH, RN, Center for Community
Partnerships for Children & Families, Baltimore, MD,
prepared statement of...................................... 56
ETHNIC MINORITY DISPARITIES IN CANCER TREATMENT: WHY THE UNEQUAL
BURDEN?
----------
MONDAY, SEPTEMBER 25, 2000
House of Representatives,
Committee on Government Reform,
Washington, DC.
The committee met, pursuant to notice, at 1 p.m., in room
2154, Rayburn House Office Building, Hon. Judy Biggert (acting
chairwoman of the committee) presiding.
Present: Representatives Biggert, Horn, Norton, Cummings,
and Kucinich.
Staff present: Daniel R. Moll, deputy staff director; S.
Elizabeth Clay, professional staff member; Robert Briggs,
clerk; Michael Canty and Toni Lightle, legislative assistants;
Leneal Scott, computer systems manager; John Sare, staff
assistant; Jon Bouker and Sarah Despres, minority counsels;
Tania Shand, minority professional staff member; Ellen Rayner,
minority chief clerk; and Jean Gosa and Earley Green, minority
assistant clerks.
Mrs. Biggert. Good afternoon. A quorum being present, the
Committee on Government Reform will come to order.
I ask unanimous consent that all Members' and witnesses'
written opening statements be included in the record. Without
objection, so ordered.
I ask unanimous consent that all articles, exhibits and
extraneous or tabular materials referred to be included in the
record. Without objection, so ordered.
Over the past 2 years, the Committee on Government Reform
has held several hearings on cancer issues. We have examined
the importance of early cancer detection and research, the role
of complementary and alternative therapies, women's cancers,
prostate cancer and the need to provide patients with their
choice of treatment.
Today we are looking at the equally important topic of
ethnic and racial disparity in cancer treatments.
Our colleague Mr. Cummings requested this hearing in order
to raise the level of awareness of disparities in care, as well
as to explore possible solutions to this problem.
We all know the devastating impact cancer has had on our
society. One in four deaths in the United States is attributed
to this terrible affliction, and one in three Americans also
develop some form of cancer in their lifetimes. This year
alone, some 552,000 Americans are expected to die of cancer.
Cancer is a disease that is color-blind. It strikes all
socioeconomic, cultural and ethnic groups in America, but it
often takes the deadliest toll among minorities. Although many
ethnic minority groups experience significantly lower levels of
some types of cancer than the majority of the U.S. White
population, other ethnic minorities experience higher cancer
incidence and mortality rates.
Let us just look at a few of these examples. The incidence
and mortality rates for multiple myeloma rose sharply in the
United States from the 1950's to the 1980's, then leveled off.
The rates for African Americans were twice as high as for
Whites. Asian Americans are five times more likely to die from
liver cancer associated with hepatitis. Vietnamese women suffer
cervical cancer at nearly five times the rate of White women.
Hispanics have had two to three times the rates of stomach
cancer.
According to a UAW/Ford report, the overall mortality rates
for African Americans in the five-county area around Kansas
City is 63 percent higher than for Whites in the same area. In
Wisconsin death rates from cancer for African Americans rose 3
percent, while death rates for Whites decreased by 2 percent.
Breast cancer occurs less often in African American women than
White women, but it is typically detected later. African
American males develop cancer 15 percent more frequently than
White males.
These are just a few examples of the racial disparities we
see in cancer rates and deaths. They are complex and not well
understood. They can be related to higher incidence of cancer,
to later detection and to cancers not being treated as well.
Research has shown that all three of these factors contribute
to the disparity in mortality.
I am pleased that two of my colleagues are here today to
talk about legislation they have introduced to deal with these
issues. Congressmen Jesse Jackson, Jr., and Bennie Thompson
have both introduced bills to elevate to a center the Office of
Research on Minority Health at the National Institutes of
Health.
I am pleased that Dr. Ruffin, the Associate Director for
Research on Minority Health, and Dr. Ottis Brawley from the
Office of Special Populations at the National Cancer Institute
are joining us today to answer our questions.
Dr. Harold Freeman is returning to testify to the committee
today on behalf of both the National Institutes of Health as
well as the North General Hospital.
Last year an article published in the New England Journal
of Medicine indicated that in early stage lung cancer, African
Americans received less aggressive treatment than White
individuals. The author of this research paper, Dr. Peter Bach
of Memorial Sloan-Kettering Cancer Center, is here today to
share insights from this research.
I am also pleased that we will hear from Dr. Linda Thompson
of the Center for Community Partnerships for Children and
Families in Baltimore, MD, and Dr. Elmer Huerta of the American
Cancer Society.
The hearing record will remain open until October 10th.
[The prepared statement of Hon. Judy Biggert follows:]
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Mrs. Biggert. Mr. Cummings, would you like to make an
opening statement?
Mr. Cummings. Thank you very much, Madam Chairlady. I want
to thank you for chairing this meeting today, and I want to
take a moment to thank Chairman Burton for convening this
hearing at my request entitled, ``Ethnic Minority Disparities
in Cancer Treatment: Why the Unequal Burden?''
On June 8th, this committee held a hearing on the
accessibility of complementary and alternative medicines for
cancer treatments during which racial disparities in treatment
were briefly examined through testimony given by Dr. Harold
Freeman, who will testify today. However, as I requested, this
hearing today affords us the opportunity to engage in a more
exhaustive investigation of the disparity issue as it relates
to conventional treatments for cancer.
I requested this hearing in response to a study published
by the New England Journal of Medicine in October 1999, which
reported that African American patients with early stage lung
cancer are less likely than Whites to undergo life-saving
surgery, and as a result are more likely to die of this
disease. I'm pleased to see that one of the principal
investigators of the study Dr. Peter Bach is here with us today
to testify.
The treatment disparities revealed in the study were of
great concern to me, particularly when considered along with
other data regarding cancer incidence and mortality rates among
minorities as compared to the majority population. In fact,
disturbingly, the incidence rate for lung cancer in African
American and native Hawaiian men is higher than in White men.
Hispanics suffer elevated rates of cervical and liver cancer,
and Alaska native and African American women have the first and
second highest of all cancer and cancer mortality rates among
females.
Cancer has also surpassed heart disease as the leading
cause of death for Japanese, Korean, and Vietnamese
populations. Further, while surgery is the treatment option for
lung cancer in its early stages, only 64 percent of African
Americans had surgery at this stage as compared to 76.7 percent
of White Americans.
And paralleling recommended treatment options, cancer death
rates among African Americans are about 35 percent higher than
that for Whites, and in my district of Baltimore City, 251
African Americans per every 100,000 people die of cancer each
year as compared to 194 of Whites.
These statistics are compelling and lead us to question why
such disparities exist among races. Numerous studies have
determined that race is not just a biological category. Race
reflects the intersection of biological, cultural,
socioeconomic, political and legal determinants. As such, to
address the unequal burden in minority health, we must examine
how all of these determinants individually and collectively
play a role in creating existing health disparities. We must
examine whether the trends in racial and economic differences
in health are due to genetic factors, or socioeconomic factors
such as income and cultural mores, including diet, have a
significant impact, or, as Dr. Bach's study suggests, do
disparities result from racism and discrimination, which can
lead to psychological stress and can restrict access to health
care, education, housing and recreational facilities, all key
components to a healthy life. Is such racism and discrimination
institutionalized within the medical industry such that
preventive measures and treatment options are limited for
minorities? The goal of this hearing is to explore these very
questions and, further, to examine how such disparities can be
eliminated.
I understand the key ways to address the issue include
increased data collection and research toward the
implementation of effective prevention, treatment and health
programs, the appropriate levels of health and social services
and nondiscriminatory access to health care. However, I look
forward to hearing from our witnesses today on this issue.
I am particularly interested in the testimony of my
colleagues, Representative Jesse Jackson, Jr., of Illinois and
Representative Bennie Thompson of Mississippi, regarding
legislation aimed toward these goals, and I thank them for
their appearance here today, and I thank them for their
concern.
Our Nation is in a race for the cure; however, we must be
mindful that this race against cancer must be run by and for
all Americans. The entry into this contest should not be
dependent on your race, but must be based on your humanity. And
winning the race for a quality, healthy life, must be a victory
for every citizen no matter their race, ethnicity or
socioeconomic status.
As we move closer to crossing that victory line, I will
remain committed to the biotech ethical principles of justice,
fairness which all call for one standard of health in this
country for all Americans, not an acceptable level of disease
for minorities and another for the minority population.
And with that I close, Madam Chairlady, and I thank you.
Mrs. Biggert. Thank you very much, Mr. Cummings, and thank
you very much for requesting that we proceed with this hearing.
I might just mention that our chairman, Mr. Burton, is on
the way, but he was delayed by traffic, and so he asked me to
act in his stead, but he will be arriving later on in the
afternoon, so I have the opportunity to do this.
Our first panel is the Representative from Illinois, Jesse
Jackson, and Representative Bennie Thompson from Mississippi.
On behalf of the committee, we welcome you here today, and if
you would please proceed with your opening statements, and
we'll start with you, Congressman Jackson.
STATEMENT OF HON. JESSE L. JACKSON, JR., A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF ILLINOIS
Mr. Jackson. Thank you, Madam Chair, Ranking Member
Cummings and members of the committee. I want to thank you for
this opportunity to discuss health disparities and particularly
an issue that I am concerned about, minority health research at
the National Institutes of Health. I am very pleased to join my
colleague Congressman Thompson on this panel to share ideas and
concrete steps this Congress may take to address health status
disparities in this country between African Americans and other
ethnic minorities and that of the general population. I also
want to take this time to thank Congressman Cummings for asking
for this hearing and for working with me and Congressman
Thompson on 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
views.
Mrs. Biggert. Thank you very much, Congressman Jackson.
[The prepared statement of Hon. Jesse L. Jackson follows:]
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Mrs. Biggert. Congressman Thompson, would you like to
proceed?
STATEMENT OF HON. BENNIE G. THOMPSON, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF MISSISSIPPI
Mr. Thompson. Thank you, Madam Chairman, Ranking Member
Cummings. I associate myself with the comments made by my
colleague Congressman Jackson from Illinois.
I, along with Representatives Lewis, Watts, and Norwood
introduced House Resolution 3250, the Health Care Fairness Act
of 1999, on November 11, 1999, in order to address the glaring
disparities between the quality of health care received by
Whites and that received by minorities.
Madam Chairman, racial and ethnic minorities are not
receiving adequate health care. Over the past few decades, we
have made great advances as a Nation in science and medicine.
However, all our citizens have not shared in the benefits of
these advances. Minority populations have significantly higher
rates of death from cancer and heart disease as well as higher
rates of HIV/AIDS, diabetes and other severe health problems.
We know that poverty, lack of health insurance and other
barriers to care are undermining the health of minority
communities. However, we have not made the commitment necessary
to understanding the genetic and behavioral differences that
allow and affect health outcomes. In addition, recent studies
show that bias in the health care system is another factor in
racial and ethnic health disparities.
All of us are familiar with all the studies, Madam
Chairman, that document consistently what problems we
encounter. One that I think is glaring for this hearing is that
Black men who contract prostate cancer are 133 percent more
likely to die than White men.
Minorities are also underrepresented in medical education
and in the health care delivery system. Although Blacks,
Hispanics and Native Americans make up 24 percent of the U.S.
population, only 7 percent of physicians, 5 percent of dentists
and 6 percent of medical school faculty members are from one of
these minority groups.
The Health Care Fairness Act includes an increased
commitment to research on minority health, improved data
systems and culturally competent health care delivery. These
changes will increase our knowledge of the nature and causes of
these disparities and improve the quality and outcomes of
health care services for minority populations.
There is an inherent need to include minority health as a
top legislative initiative. Just like Medicare reform and
affordable prescription drugs for seniors, immediate and
decisive action must be taken to address the disparate
treatment minorities receive from health care providers.
Already a number of health care studies have been released
which clearly demonstrate the fact that minorities receive less
and/or different treatment by health care providers.
Madam Chairman, we must make every effort to address these
problems and reverse the extremely disturbing trend. My bill is
a first positive step in that direction. H.R. 3250 has gained
the 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
center.
Mrs. Biggert. Thank you. My time has expired, so I'll turn
to Congressman Cummings.
Mr. Cummings. Thank you very much, Madam Chairlady.
Representative Thompson, I think you talked about in your
testimony--I mean, in your legislation, rather, it addresses
the issue of cultural competency in medical education. Can you
help us with that and what the significance of that is? It
sounds like that's what also Representative Jackson is talking
about.
Mr. Thompson. The passion.
Mr. Cummings. Right.
Mr. Thompson. Absolutely. We have four African American
medical schools in this country. When we started looking at the
research for this bill, we found that in NIH only four-tenths
of 1 percent of their money went to minority institutions. So
we felt that given the minority population in this country,
that was a problem.
One of the reasons we're talking about creating this center
is to get an elevation or, if you please, a standing that would
give additional finance and credibility.
The other concern, to be quite honest with you, is everyone
has been sympathetic to all these health concerns, but it seems
to fall on deaf ears when it comes to research and actual
dollars in support of it. So one of the reasons we have coined
this bill, we also call it a civil rights bill, in that richest
country in the world, it's an absolute travesty that we have
statistics for American citizens so glaring as what we have
here today that we can't in good conscience not support this
bill, because it is the right thing to do, and that's the
cultural disparity.
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
system.
And as Chairwoman Biggert indicated in her opening remarks,
the ability to detect many of these diseases early is a
significant factor in reducing health disparities, but in many
of our communities, from African Americans to Latinos to those
socioeconomic communities that are economically depressed, if
they don't feel comfortable going to hospitals and to doctors
and to health care clinics because of the myriad of barriers
that confront our own health care delivery system, then we find
out these statistics at the tail end of their lives, which
oftentimes reduces the life span of an American.
Mr. Thompson. Congressman Jackson is correct. You have to
have that passion for the research. If you're not interested in
minority health outcomes, then it is a great possibility that
you won't give it the passion required to come up with good
research and good data.
The other thing is most of the African American doctors in
this country happen to graduate from African American medical
schools. We have to enhance that opportunity. We have to give
those schools the best resources possible to go back and
practice in that medically underserved area. If we could do
that, we could make a tremendous impact on the problems
associated with inadequate health care delivery systems.
A number of grants and contracts, as my bill talks about,
it's very important. A lot of it has to do with resources. We
have documented the problem. We've tried to offer legislation
to address it. If we can get the support, bipartisan support,
of our bills, I am convinced that over a period of time we can
reduce those numbers so that it won't be a racial disparity
attached to health care in this country.
Mr. Cummings. Just a last comment. As you were talking,
both of you were talking, I couldn't help but think about this
morning in my district with--we have Johns Hopkins University
and also University of Maryland, both with medical schools, but
Johns Hopkins, you know, I was just thinking that Johns Hopkins
receives hundreds of millions of dollars yearly for research,
and I was just thinking if you gave Meharry just some of that,
it would certainly enhance the school, would create a better
environment for those doctors or students that are coming
through there, and would give them an opportunity to do the
very things that you all have talked about this morning, being
giving service to those underserved communities and having some
kind of cultural sensitivity at the same time.
I want to thank both of you. Really appreciate it.
Mrs. Biggert. We've been joined by Representative Kucinich.
Do you have questions?
Mr. Kucinich. I just wanted to add my support for the
legislation sponsored by Mr. Thompson and with Mr. Jackson's
participation. As someone who served as mayor of a major city
and has seen the disparities that you've talked about in terms
of the demand for health care that often is unmet, the point
that you make here is so important, and I think that all of us
in the Congress should be working very closely with you to make
sure that these issues are addressed so we cannot only wipe out
the disparities, but also, even more significantly, attack that
very nature of why it is that people are getting cancer anyhow,
let alone that they have it more than anyone else.
So I salute both of my colleagues for their work on this,
and I look forward to working with you. Thank you. Thank you.
Mrs. Biggert. If there are no more questions, then we will
thank you very much for coming, and thank you very much for
your testimony, and we really appreciate the passion that you
have for this. Thank you very much. We appreciate it, and if
the next panel would like to come up.
If you would all like to stand, as the committee usually
swears everyone in if you're giving testimony or here to answer
questions. So if you would like to raise your right hands.
[Witnesses sworn.]
Mrs. Biggert. Thank you, and be seated, please.
Let the record reflect that the witness responded in the
affirmative.
On behalf of the committee, we welcome you here today, and
I think we will begin with Dr. Freeman.
Dr. Freeman. Thank you, Madam Chairman.
Mrs. Biggert. And you're recognized for an opening
statement, which is usually about 5 minutes, then we will have
5 minutes of questioning by the committee here after all of you
have testified. Thank you.
STATEMENTS OF HAROLD P. FREEMAN, M.D., ASSOCIATE DIRECTOR FOR
REDUCING HEALTH DISPARITIES, NATIONAL CANCER INSTITUTE,
BETHESDA, MD, ACCOMPANIED BY JOHN RUFFIN, ASSOCIATE DIRECTOR,
OFFICE OF RESEARCH ON MINORITY HEALTH, NATIONAL INSTITUTES OF
HEALTH, BETHESDA, MD, AND OTIS BRAWLEY, M.D., DIRECTOR, OFFICE
OF SPECIAL POPULATIONS, NATIONAL CANCER INSTITUTE, BETHESDA,
MD; PETER B. BACH, M.D., MEMORIAL SLOAN-KETTERING CANCER
CENTER, HEALTH OUTCOMES RESEARCH GROUP, NEW YORK, NY; LINDA S.
THOMPSON, DrPH, RN, CENTER FOR COMMUNITY PARTNERSHIPS FOR
CHILDREN & FAMILIES, BALTIMORE, MD, ACCOMPANIED BY KEITH
PLOWDEN, Ph.D., RN, ASSISTANT PROFESSOR; AND ELMER HUERTA,
M.D., AMERICAN CANCER SOCIETY
Dr. Freeman. Thank you, Madam Chairman and distinguished
Congressmen and women. I am Dr. Harold Freeman, and I am
pleased to have the opportunity to speak to you this afternoon
about disparities in the diagnosis and treatment of cancer and
the unequal burden of cancers among minorities, the poor and
the underserved.
This spring Dr. Klausner, the Director of the Cancer
Institute, asked me to consult with him on these issues, and
later, particularly 24 hours ago, I was appointed as the
Director of the new Center to Reduce Cancer Health Disparities,
so I have been in this position for 1 day, including sleeping
time.
Let me point out that profound advances have been made in
biomedical science over the last several decades. Many
Americans have benefited, but some have not. And there are some
groups of people who experience a heavier burden of cancer
mortality and incidence, particularly certain minorities, the
poor and the underserved. I believe that the unequal burden of
cancer in our society is a challenge to science and is a moral
and ethical dilemma for our Nation.
Health disparities have been framed historically as racial
and ethnic differences, and clearly some races and ethnic
groups don't do as well, but the fact of the matter is, as you
have pointed out, Congressman Cummings, is that races are not
biological categories. They are social and political categories
which we need to keep in mind.
The consequences of racism, however inherent in racial
classifications, have for some racial and ethnic groups been
associated with several negative factors. For example, fewer
social and educational and economic opportunities associated
with racism, greater exposure to stress and unsafe environments
and reduced access to quality health care.
I would like to point out in another role that I have as a
member of the President's Cancer Panel, last year, in 1999, we
reviewed the National Cancer Institute's history, current
status and evolution. We made one major conclusion, that
whereas we had made tremendous progress in the war against
cancer since 1971 when Richard Nixon declared that war,
research has advanced greatly during that time, but we
believe--the panel believes that there's a critical disconnect
between what we discover in America and what we deliver to the
American people. Barriers that prevent the benefits of research
from reaching all of our populations, particularly those who
bear the greatest disease burden, must be identified and
removed.
In my own work I have thought a great deal about this, and
I have reduced these considerations to three major
considerations that cause disparities. No. 1 is poverty itself,
which has a universal effect. Poor people have substandard
living conditions. Poor people are less educated, have
frequently a risk-promoting lifestyle and lower access to
preventive health care.
Poverty has a universal human effect, but it is
disproportionately reflected in certain groups such as African
Americans. A third of African Americans are poor. African
Americans make up only about 12 percent of our population.
The second factor I think is very critical is culture,
including communication systems, belief systems, values,
traditions, lifestyles, attitudes and behaviors which need to
be understood. Now, culture, Madam Chairman, is not equal to
race. There are many cultures within a race, but I think in our
research we need to understand what it is about various culture
of our society that may lead to excess, incidence and sometimes
mortality.
The third factor which we're here to talk about today is
social injustice, and social injustice is reflected in studies
that we're examining here today, particularly the example given
by the fact that Black Americans presenting with early cancer
of the lung, colon, breast and prostate are less likely to get
the curative treatment. Dr. Bach will elucidate this further.
What are the reasons that this could happen in America?
Correcting for socioeconomic status and whether people have
insurance or not, these conditions still hold. So we need to
look at what it is in America that could allow a person or a
group of people to present with early cancer, curable cancer,
and not get treated in the same way as others.
In my own view, the answers have to be in two categories.
No. 1, what is the attitude and the bias of the health care
givers? This seems to be an element that needs to be further
explored. No. 2, what is the level of distrust of the people
who are being treated? We've had a Tuskegee incident here, and
I think there's still concern among Black people that they may
be experimented on. So these two elements need to be further
explored.
I believe that the issue goes very deep. The issue has to
do with how American people in one group perceive each other,
value each other and behave toward each other, so that the
question of social injustice, the short arm of it is what's
happening today. The long arm of it is what has happened over
nearly 400 years in America with respect to social injustice
with slavery and legalized segregation.
I'd like to end, because I believe my time is probably up,
with a general statement. I believe that we are in a very
critical time in America. We have made great advances in
science. Those advances are not being evenly applied across our
population. Poverty seems to be a determining factor, but also
social injustice has a bearing. And so I believe that in our
studies to come, we must learn more about these differences in
populations, whether they're intrinsic within the population's
culture or whether they're extrinsic, related to how people are
being treated in our society.
One thing that we need to do is to create standards of care
for all American people and know what they are. We need to
monitor those standards to see that everyone is treated in the
same way. And we need to develop a country that has health
providers that are very diverse, that reflect the country that
we really are so that the issue of sensitivity of how people
are getting treated in our society will somewhat be improved.
Thank you very much.
Mrs. Biggert. Thank you very much, Doctor.
[The prepared statement of Dr. Freeman follows:]
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Mrs. Biggert. We'll proceed then to Dr. Bach.
Dr. Bach. Thank you very much.
Although cancer incidence rates are only 13 percent higher
in Blacks than in Whites in the United States, mortality rates
from cancer in Blacks exceed that of Whites by 33 percent. Lung
cancer ranks No. 1 amongst these cancer killers and claims the
lives of more than 150,000 people each year. Just as in cancer
overall, we have known for a while that lung cancer
disproportionately affects Black Americans.
Today when compared to White Americans, Black Americans are
disproportionately affected by lung cancer in two ways. First,
they're at an increased risk of developing lung cancer. Second,
they have a far shorter survival after they are diagnosed with
lung cancer.
Our research group based at Memorial Sloan-Kettering Cancer
Center in New York and at the National Cancer Institute here in
Bethesda conducted a study that was published in October 1999
to examine this latter problem, specifically why is survival
shorter for Black patients than for White patients after a
diagnosis of lung cancer. Our focus was on the survival of
Black and White patients who were diagnosed at a potentially
curable stage, because we knew that even among these patients,
Black patients have much poorer survival than White patients.
To illustrate this point let me give you some survival
statistics from the patients we studied, Black and White
patients 65 years and older who have potentially curable lung
cancer. During the years of our study, we saw that 34 percent
of White patients who began our study were alive 5 years after
diagnosis, while only 26 percent of the Black patients in our
study were still alive.
We thought for a number of reasons that this difference in
survival between Blacks and Whites with potentially curable
lung cancer might be due to Black patients receiving inferior
treatment relative to that received by White patients, so we
designed a study to address two questions: First, are Black and
White patients who are diagnosed with potentially curable lung
cancer equally likely to get the best available treatment,
specifically surgical removal of their cancer? Second, if
treatment rates are unequal, then to what extent do differences
in treatment account for the overall lower survival rates that
we see in Black patients?
Our study had some special features I'd like to point out.
First of all, we addressed our questions by analyzing the
National Cancer Institute's SEER data base. This comprehensive
cancer incidence data base is the primary source for most
cancer statistics.
Second, we limited our analysis to patients who were over--
who were 65 years or older, and, therefore, all of the patients
in our study had Medicare insurance at the time that they were
diagnosed. Therefore, we knew that any differences in treatment
that we observed would not be due to differences in insurance
coverage.
With the caveat that our findings only report on results
for patients 65 years and older, we found two things. First,
while 77 percent of White patients underwent surgery for their
lung cancer, only 64 percent of Black patients underwent
surgery, and this difference was highly statistically
significant.
Second, although overall there were the large survival
differences between Whites and Blacks that I'd mentioned a
little earlier, we saw that those Black and White patients who
were treated equally also had equal survival.
The consequence of these two findings put together is that
differences in treatment are responsible for a large part of
the difference in survival that exists between Black and White
patients with early stage lung cancer.
I should emphasize that this difference in treatment was
not due to differences in insurance coverage, as I've already
mentioned. All of these patients had Medicare insurance. Also,
this difference in treatment was not due to differences in
socioeconomic status. Even among those White and Black persons
who were within the lowest income quartiles in our study, we
saw that 71 percent of poor White patients would have surgery
for lung cancer, while only 63 percent of poor Black patients
underwent surgery, and this difference also was highly
statistically significant.
We cannot determine from the study why Black patients
receive inferior treatment. Our study does provide an estimate
for the magnitude of the difference in treatment received by
Blacks and Whites and also documents that this difference in
treatment is responsible for some of the observed survival
differences that we see in lung cancer.
At Memorial Sloan-Kettering we are continuing our efforts
to understand and improve the treatment of Black persons with
lung cancer. We have formed a partnership with North General
Hospital in Harlem in collaboration with Dr. Freeman to expand
the screening and treatment services that we are able to offer
for persons in need.
In addition, the American Lung Association in New York City
and the National Cancer Institute have both continued to
provide our research group with funds so we can continue our
inquiry into the disparities we see in both cancer treatment
and survival.
Thank you.
Mrs. Biggert. Thank you very much, Doctor, for your
insight.
[The prepared statement of Dr. Bach follows:]
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Mrs. Biggert. Dr. Thompson, if you would like to proceed.
Ms. Thompson. Madam Chair, Ranking Member Cummings, and the
rest of the committee, thank you for asking me to talk about
what we're doing at the University of Maryland to reduce
disparities. I would like to just highlight some of the things
we're doing for African American males and some of the
community level interventions we're doing at the University.
Faculty and students at the School of Nursing reach out to
communities in Maryland by providing direct primary health care
services to medically and geographically underserved
populations in a number of innovative models.
Faculty and students operate a community-based health
center which brings low-cost health care services to an inner-
city community in Baltimore City, as well as manage and staff
14 school-based and school-linked clinics throughout the State.
Other examples of initiatives that we do is we offer--we
conduct six mobile health units that are staffed by the School
of Nursing and faculty. These services are mobile health
services to vulnerable populations in the State.
We also train lay workers to conduct outreach education and
support in high-risk communities throughout the State of
Maryland. Hundreds of individuals thought of as hard to reach
are touched by these services. Lives are being saved through
these primary health care initiatives.
For years, my colleagues at the University of Maryland have
researched the problems facing African Americans in this
country. We have worked to better understand African American
males, their cultural beliefs and practices and how they are
impacted by public health.
The result of clinical studies show that lack of accurate
knowledge about cancer and cultural misconceptions are major
barriers to increasing the number of African American men who
participate in early screening and treatments.
Our research has also shown that encouragement by loved
ones and friends can encourage healthy life-styles. More
research is needed, however, to better understand these factors
and their impact on behavior and to design more culturally
specific innovations that can motivate African American men to
seek early cancer screening and care.
Through funding from the National Cancer Institute, the
Maryland Special Populations Cancer Network partnered with
community-based organizations to address Black male cancer
disparities in Baltimore City, MD's Eastern Shore and southern
Maryland.
In July, the University held a cancer prevention workshop
within the State; and we reached hundreds of people who spoke
candidly about the cancer prevention needs of minorities and
lack of educational resources that are available to meet their
needs.
At the University of Maryland-Baltimore, researchers are
looking at ways to reduce costs as we continue to try to
provide quality health care service. We believe that prevention
is the moral and cost-effective course to take.
We are convinced that effective reduction in cancer
incidence and mortality among African American men requires
community-based education and public health efforts
specifically tailored for them.
We know from data from the World Health Organization that
availability, accessibility and acceptability of resources
determine access to preventive health care interventions.
Lack of any health insurance remains a critical problem to
trying to serve high-risk communities.
Preventive cancer screening is critical, and we need to
develop workable strategies in order to reach people throughout
the country.
I have seen in my practice many men who come in for care
who work every day and are unable to get the services they need
until they're disabled. We do need to try to reduce this
disparity because it increases the burden of health care costs.
I am convinced that with increased Federal funding we would
be able to provide targeted primary health care services to the
community. The strategies we seek in order to reduce the
disparity--to provide more direct primary health care services
to high-risk minority communities, nurse practitioner clinics
and accessible mobile vans--are strategies we have seen that
could be used to reach high-risk communities. The use of lay
workers is also an effective way to out reach to communities.
If we are to successfully eliminate minority health disparities
we must make every opportunity to reach African American men.
Thank you.
Mrs. Biggert. Thank you very much, Dr. Thompson.
[The prepared statement of Ms. Thompson follows:]
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Mrs. Biggert. Now Dr. Huerta.
Dr. Huerta. Buenas tardes. Good afternoon. My name is Elmer
Huerta. I'm the founder and director of the Cancer Risk
Assessment and Screening Center of the Washington Cancer
Institute at the Washington Hospital Center here in Washington,
DC.
I am the founder of a clinic that has a theme. It says, if
you are sick, this is not a place for you. This is for healthy
people only. Over 7,500 people crossed our doors in 5 years.
You can't imagine how much I shiver every time I have an
uninsured person come in for cancer screening. I wonder to
myself how this wonderful and powerful country can allow its
citizens to have this bad time.
I'm pleased to appear before you today as a member of the
National Board of Directors of the American Cancer Society. As
you might know, the American Cancer Society is the Nationwide,
community-based, voluntary health organization dedicated to
eliminating cancer by preventing cancer, saving lives and
diminishing suffering from cancer through research, education,
advocacy and services.
Most of my work as a physician has focused on providing
care to those in greatest need. My dedication has been to my
community, which primarily represent Latinos and African
Americans in the greater Washington, DC, area. Allow me to
share a little bit about them.
Many of my Latino patients have origins outside of these
borders, our borders. They are Americans nonetheless who are
exploding in numbers and make up an increasing number of the
U.S. work force.
As for my African American patients, some of them are
native Washingtonians whose ancestors helped build this
wonderful city known as the Capitol where decisions are made
daily that effect the lives of all Americans. Despite the
history and the many contributions made by these populations,
they are not pictures of health. Too many of them are
uninsured, unemployed and at an increased risk for cancer and
other chronic diseases.
We all know people--friends, neighbors and beloved ones--
who are surviving cancer today in greater number than before.
The evidence of decreasing cancer mortality is encouraging and
presents a compelling argument for prevention, early detection
and scientific research. However, the higher cancer incidence
and death rates among minorities suggest that not all Americans
are equally benefiting from scientific breakthroughs and cancer
prevention and control efforts.
So we ask ourselves, why do these disparities exist and how
can we address this problem?
For starters, let me give you a snapshot of this crisis. As
a Nation, we have spent $1 trillion each year on health care,
yet only 1 percent of that goes to population-based prevention
efforts. That translates into less than a penny a day per
person. Sergeant General David Satcher emphasized this fact at
the launching of Healthy People 2010. Primary prevention
strategies such as tobacco control, nutrition and physical
activity do save lives and do reduce the social and economic
costs of cancer and other diseases.
It seems to me that most of our medical establishment is
very interested in Mrs. Smith's tumor. What I request from you
is that we must focus on Mrs. Smith herself.
The American Cancer Society has identified several areas of
promise that will help us tackle these challenges, some of
which are captured in the Institute of Medicine Report on the
Unequal Burden of Cancer. I respectfully urge the committee to
consider the following recommendations. I can assure you that
the American Cancer Society stands ready to assist you in any
way.
First, we must sustain and expand the proven research
programs that have enabled us to pursue a path of scientific
excellence and discovery in cancer research, while also seizing
extraordinary opportunities to further the progress made by our
previous research success.
Second, we must focus on strategies that involve
communities in creating and delivering the programs that will
reduce and eliminate that unequal burden of cancer, with
government providing the support and resources critical for
success.
Next, we must place a greater focus on prevention and early
detection efforts. That means bringing cancer screenings to the
people, instead of waiting for them to come to us. We must
continue our efforts to build awareness through creative
approaches utilizing channels such as the media, radio, our
schools and churches. Resources need to be directed toward
development of programs that will better reach and serve
medically underserved populations.
We must continue to fund research. We must certainly apply
what we know about cancer prevention, early detection and
treatment equally to all communities to ensure that all
Americans benefit from the progress we have made in the 20th
century. Eliminating disparities is critical to the success of
our national cancer program and to improving the lives of all
American families.
Thank you.
Mrs. Biggert. Thank you very much, Doctor.
[The prepared statement of Dr. Huerta follows:]
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Mrs. Biggert. We'll now turn to the questioning, and at 5
minutes--the other two witnesses are going to answer questions
that we might have.
In fact, I will--we'll begin by asking Dr. Ruffin, I think
that, as you know, the National Institutes of Health has
traditionally opposed the creation of any new centers. So what
is the NIH position on the two bills that have been introduced
by Congressman Jackson and Congressman Thompson to elevate the
Office of Research on Minority Health to a center?
Dr. Ruffin. Madam Chairman, if you would permit me to make
one sentence before I get to the answer of your question.
But I wanted to say, in light of much of the testimony that
has been provided here, that my office, the Office of Research
on Minority Health, was created 10 years ago during the tenure
of then Secretary Louis Sullivan; and I must say to you that
over that 10 year period of time I have had the opportunity to
go to various parts of this country and listen to testimony,
much the way you are listening to it here today. We've held
hearings around the country where more than 1,000 people have
testified; and individuals who are survivors of various chronic
diseases, not just cancer but heart disease and diabetes,
scientists as well as politicians and others have come before
the committee.
I think today you've heard a number of concepts and terms
that have been mentioned to you, that when we look at outcome,
much of this may be due to biology, some of it may be due to
socioeconomics, some of it may be due to legal and political
poverty and racism, all in terms of what the health outcome is
going to be eventually.
I think in a nutshell I must say to you that much of what
we've learned from many of the hearings around the country is
in fact that these outcomes are due to all of the above. They
have all played a special role in some form or fashion.
The point is, we must get to the point in this country
where we stop passing the buck. With those who are in the box
that has to do with biology, say that, no, it's not mine, it's
really about the socioeconomic, it's about--all about poverty.
It's about all of the above, and until partnerships are built
between the boxes then we will be here talking about this for a
long, long time.
To your specific question, I think yes is the answer.
There's no denying of the fact that in the early going at the
National Institutes of Health there was some skepticism about
what would happen if, in fact, a Center for Research on
Minority Health was created at the NIH. I think there is
absolutely no doubt about it, that we've come a long ways and
that that thought no longer persists. The National Institutes
of Health is convinced that the elevation of the office to
center can play a very, very important role in the solution to
this great problem.
Mrs. Biggert. Thank you very much.
Before I forget to do some housekeeping, it appears that
Chairman Burton's plane has been further delayed by the
weather. If you've looked outside the last couple of hours, you
would know that that has happened. So he has asked that his
statement be included in the record. So, without objection,
that would be so ordered.
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
cancer?
Dr. Ruffin. Not really. I think that one of the things that
concerned me--and to comment to some extent on what Dr.
Thompson just said--is that the solution to much of this also
resides in the relationship--doctor/patient relationship.
There is no question in my mind when I talk to some of my
majority friends who have had to face major decisions about
their health and had to choose in some instances between
radiation and surgery and I have asked them what was the major
factor in your deciding one way or the other and let me tell
you that the major factor was doctor/patient relationship, the
fact that they had a good relationship with their physician.
All of us sometime walk into a doctor's office with
misconceptions. But if we do not feel comfortable and if the
doctor doesn't feel comfortable with us, if we go in there with
misconceptions, we come out with misconceptions.
So there has to be a way--and sometime when we're talking
about health issues and you hear us talking about training,
people talk about these two issues as if there is a major
separation, but there is a close connection between when we
talk about research and when we talk about training. We have to
figure out a better way of training our physicians so that that
cultural competence that is needed will be there.
Mr. Cummings. Just one followup question.
Mr. Horn [presiding]. Please.
Mr. Cummings. A few years ago when we started moving more
and more toward managed care in my district, and I'm sure in
districts throughout the entire country, you can find people
who--particularly elderly or middle-aged people that worked
with doctors just about all their adults lives, and then
suddenly, for various reasons, maybe their doctor wasn't on the
list, and they found themselves with new doctors. And just
following up on what you just said, I imagine that could play a
part too. You move. You have a new doctor. You're unfamiliar
with that person. And that person is telling you something is
one thing, but that person who you've been with for the last 25
years telling you is a whole other thing. So you think the
trust factor is very significant.
Dr. Ruffin. There is no doubt in my mind. Those individuals
sitting at the table who see patients on a regular basis may be
able to comment on that a little more, but from my experience I
would think that would be a factor.
Mr. Cummings. Thank you.
Mr. Horn. Thank the gentleman.
Dr. Freeman, I would like to ask you a few questions. I
gather that you recently accepted a position as the Associate
Director for Reducing Health Disparities for the National
Cancer Institute. Will that position bring you to Bethesda full
time?
Dr. Freeman. No, it will not. It is not a full-time
position.
Mr. Horn. Have you had a chance to look at the proposed
budget for the National Cancer Institute and what about the aid
that they can provide to this very question? What is your
feeling on that?
Dr. Freeman. My job started yesterday.
Mr. Horn. I expect you to have all the problems solved by
tomorrow.
Dr. Freeman. I have a general feeling, in speaking to Rick
Klausner who hired me into this position, that he considers
this a very, very important issue and will give the fullest
support.
It's going to take a while, I think, to determine how money
should be spent. But I'm looking at four different things at
this point.
No. 1, I think we have to have a research division that
will do research related to these issues--not just to special
population research that is going on now but larger than that.
I think, No. 2, we need to have a communications division,
because culturally targeted communication is so critical to
preventing disease and to instructing people how and when they
should come in for a certain test.
Third, I think that, ultimately, a huge effect will come
related to creating health care related policies in our Nation
which are compatible with the problems that we must be facing.
So, for example, if we're discovering things in our discovery
system but we're not delivering them appropriately to all of
our population, this is a policy issue. So we're going to have
a division that is going to be kind of a think tank division to
deal with policy so you can be well instructed about the
substance of the problems that we face.
Mr. Horn. This is a good time for you to get your proposals
in, because September is when all government agencies have
money to reprogram. And in the going out of this fiscal year,
it's a good opportunity to start pilot projects and get that
money so you can use it. And, as I remember, the National
Institutes of Health overall can move money around between some
of the Institutes. Also, within the National Cancer Institute I
would assume they could move money around, also. We shouldn't
have to wait a year for you to have what you bring to the
table. We shouldn't have to do that. So we'll need to get
moving now.
Dr. Freeman. Thank you.
Mr. Horn. What specific programs do you think are needed to
reduce these disparities? When I was on the Civil Rights
Commission, we had studies on this throughout the country; and
that was 30 years ago.
Dr. Freeman. Well, one question that we have is to try to
determine what the precise variables are that cause disparity.
We have groups according to race and culture, but we do not
know enough about what the precise variables are that cause
people not to do as well.
For example, how much of this is related to lack of
knowledge and resources? How much of it is related to the life-
style factors that we all live within that we call culture. How
much of it is related to what we're talking about here today,
the matters of social injustice? How can we separate,
disentangle the meaning of race as we use it in society from
the meaning of class and culture? These are some of the early
questions.
Another question is, what about parts of the country that
we already know how to identify where people are dying at a
higher rate, geographically and culturally delineated areas of
excess mortality.
In 1989, I published a paper in the New England Journal
that showed, for example, that Black Americans, particularly
males in Harlem, have less of a chance of reaching age 65 than
males growing up in Bangladesh, which is a third-world country.
We need to look and learn from the community of America what we
should do for the most distressed communities; and this is one
of the areas, lines of research that I will take.
Mr. Horn. What about the research of minorities in the
military where they move around and they aren't in a ghetto
here in the domestic United States? Is that worthy of research?
Dr. Freeman. It is. There is a recent paper, and there is
more than one recent one, in May, which looked at the veterans
hospital--I mean, the people in the service, women who
developed cervical cancer who were the wives or perhaps they
were soldiers themselves. And when they have looked at the
results they found, as Dr. Brawley has said, that when people
of any race are treated with the same treatment at the same
states of disease the outcome is the same. So our military
model is one perhaps we need to look at very closely because,
apparently, the access is the same for people who are in the
Army or Navy, and so America can learn. So we need to look at
those military models.
Mr. Horn. Obviously, one's socioeconomic status does have
something to do with this.
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
serve.
Dr. Huerta. Thanks for the question, Mr. Cummings. It would
tremendously effect the quality of service we can provide to
our patients.
As an anecdote, I had a patient with pancreatic cancer some
years ago. He used to be from the--he was from the Dominican
Republic. So I diagnosed the cancer. And the next day he came
with 11 members of his family. But the amazing thing is that
when the family came to see me they didn't let him get inside
my room. The family wanted to talk to me before that, and they
pleaded with me not to tell him the truth.
So I'm from Peru. I'm recently arrived to this country. In
Peru, if you tell a patient that the patient has cancer, you
are considered an inhuman doctor. That's culture. That's
incomprehensible for many Americans. But that is culture.
So if a doctor here doesn't know that, subtle changes in
the culture of people, how can we treat with quality an Asian
American person, a Latino person, a middle Eastern person or an
African American person? We all have different qualities.
And medical schools now they lack this kind of training. I
think we have to allow our medical students to open their eyes,
open their minds that this society of ours is becoming
increasingly multi-cultural. Medicine reflects society, in my
opinion. Quality of care is not reflecting those changes in our
demographics.
Mr. Cummings. Now, Dr. Brawley, you know, when you think
about this whole idea, I keep going back to Dr. Bach's study
where you have those 65 people, people 65 and older. Am I
right, Dr. Brawley?
Dr. Brawley. Yes.
Mr. Cummings. And for some of them to get surgery and
others not, and apparently surgery does make a difference, I
mean, what conclusions did you come to, if any, in regard to
that?
Dr. Brawley. One can look at virtually every major cancer.
I personally wrote the literature on prostate cancer and find
the same finding that Dr. Bach had.
Breast cancer, which I've become very interested in, is a
good example of looking at this. In the military, by the way,
Black women have a much lower breast cancer mortality then
Black women in the United States as a whole. Partially because
of cultural differences between Black women who were either
married to a soldier or in service themselves, partially
because they have access to care, they have access to
convenient care, and they have access to good care, which is
the other factor.
There are also some hospitals like Henry Ford Hospital or
the University of Chicago that published their series over the
last 20 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
day.
But in your study you're dealing with 65 years and older.
Would it change for that population, say the 35 to 55, and
would they make perhaps different decisions? Because one of the
factors I guess that comes into play is, if somebody is going
to get surgery, they have to look at the shape of their body,
what kind of health--whether they're healthy and whether they
can withstand surgery. Because I'm not a doctor, but I
understand surgery can have an impact on your body. So I'm just
wondering if that would change these figures a bit, you think?
Dr. Bach. As I mentioned, we didn't look directly at the
younger populations. We did that for a special reason, which is
that we wanted to control--what we use in the epidemiologic
lingo--control for insurance status. In other words, we wanted
to be sure if you weren't having the surgery it wasn't because
you were uninsured.
In terms of the comment of the risk of surgery and what it
can have on your body, we were able, because of the structure
of this data base that's maintained by the NCI, able to
ascertain whether or not people were too sick to have surgery.
We used the term ``comorbidity'' to describe that.
What I can tell you is when we looked at Black and White
patients who had very low level, medium levels and high levels
of comorbidity comparing within those different groups in every
case Black patients were less likely to have surgery than
Whites.
To address the question you began this with, as I said, we
have examined this data, but there was a study published
approximately 6 months before ours which examined the rate of
surgery for Black patients of all ages using the same data base
but without the benefit of the insurance information we had;
and in that study also it was shown that the younger Black
Americans were less likely than the younger White Americans to
have surgery.
Mr. Cummings. Thank you very much, Mr. Chairman.
Mr. Horn. We thank you for all your good questions.
We now yield 5 minutes to the gentlewoman from the District
of Columbia, Ms. Norton.
Ms. Norton. I thank you, Mr. Chairman.
I regret very much that I was not able to attend the entire
hearing as this is a very special interest of mine.
I am very hopeful, I must say, about cancer. Only a few
years ago I only--literally, I don't think people were talking
about people living with cancer. It's almost like AIDS. People
now live with AIDS. People live with cancer.
The elevation of the NIH Office of Research on Minority
Concerns to an NIH center is, it seems to me, minimally
necessary if we're serious about tackling these disparities. I
am told that if this is not done by Congress it may be done
administratively, that there may be the authority to do so. I
certainly hope that does not become necessary. I think it would
send a very bad message if somehow, given these disparities, we
were not able to get this done through the Congress. And I'm
certain that everyone in the Congress understands and is
sympathetic with the need here.
I would just like to say a word, since I did not hear the
testimony, about my major concern, which is prevention. We know
in some instances there is more cancer; we know in some
instances there is less cancer. We are convinced that some of
these are not human differences but ethnic differences. Until
we find out, we will not have a good way to get at these
disparities. There will be a lot of continuing good guesswork
on the part of physician and health care professionals. I think
we owe the minority community better than that.
I am particularly interested that there is less breast
cancer among African American women, for example, but more
cancer death; and now everyone goes to the obvious, that is--of
course, that there is less access to health care. But I would
say to you I think we have an equal obligation to go to
prevention here if there are fewer cases of breast cancer or if
they occur less often. Then it seems to me we have a better
chance of preventing breast cancer among African Americans than
among Whites.
One of the reasons we don't do so is because they don't
have access to preventative care. But another reason is that
the preventatives that are now becoming known to middle-class
people and 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
premises.
No. 1, the message needs to be consistent. Consistent in my
opinion means every single day. Can you imagine your 11 o'clock
news without sports? Probably not. But there are many 11
o'clock news without health.
No. 2, the education needs to be comprehensive. There is no
point in talking only about breast cancer or only about
prostate cancer. It needs to be about obesity, cigarette
smoking, seat belts, maternity health--the whole comprehensive
health education.
No. 3, we have to use the channels that the community uses.
Some people love radio; others like television. People are on
the internet already. Some people like to read. We have to
produce materials for all of them every day.
No. 4, messages needs to be delivered by someone the
community trusts and identifies with. So with this moral that
we have been able to attract all of these thousands of people
for preventive care.
The other side of the coin, in my hospital I do ask--and
this is new data that I will publish. I asked my cancer control
person in the hospital to please get me a list of all the
advanced cancers that went to the hospital over the last 5
years. I was interested in breast cancer, prostate cancer,
cervical cancer, and colorectal cancer--preventable,
detectable. As you know, she came up with a list of 200 people.
All of them, 95 percent of them, lived in the zip code 20010
and 20011 which all cross my hospital. Stages three and four
advanced, incurable cancers.
Guess what? Ninety-eight percent of these people are fully
insured--Medicare, Medicaid, commercial health insurance.
That's the other side of the coin. Why are these people waiting
at their homes letting their tumors grow?
So this is the kind of thing that I meant when I said that
our medical establishment is much more interested in finding
the molecules, the genes, about the lady's tumor. I think we
should be interested also in the lady herself. Why is this lady
waiting so long?
Ms. Norton. Thank you very much. I must say that was itself
a lesson in prevention.
Thank you, Mr. Chairman.
Mr. Horn. Well, thank you for asking the question.
I have seen various academic relationships with working
hospitals where sometimes the person is simply a case number
when the students come in, instead of saying, good morning,
Joe, or good morning, Susie, how are you doing today? So I
think we have that breakdown that is needed in medical school
that was mentioned. What else would you have the--we don't have
interns anymore, we have residents. But while they're in
medical school, what do you think they should be taught to be
sensitive to patients especially of different races and
ethnicity? Yes.
Dr. Huerta. Thank you for your question, Mr. Horn.
I think they should be sent to--obligatory to inner-cities,
to community clinics that serve multicultural populations. They
should not graduate from medical school if they don't have that
kind of training. I would do that.
I have students in my little clinic, they are 2nd year and
1st year medical students, so they haven't really gone through
the whole medical studies; and they, when they have my Latino
patients, when they have my poor African American patients,
they really--at the beginning, I can see their eyes. They are
kind of seeing different people, different cultures. But at the
end of the rotation, which is 3 months, they can talk to them.
I can see their eyes. They were lighting because they have
learned something, how to see different kind of cultures.
I would be very tough. No graduation if you do not have
training in treating multicultural people.
Mr. Horn. I think that is an excellent suggestion. As a
former university president, that's what I had the School of
Education do. Don't put them out in the suburbs. Put them out
where you will meet real people in the inner-cities.
Dr. Bach, this essentially goes to you. Do individuals in
different backgrounds or races react differently to
chemotherapy and radiation treatment? And do some fare better
under those chemotherapy and radiation treatments?
Dr. Bach. I--actually, I may have to pass this question to
one of the oncologists sitting to our right.
Our study looked at a large population of people using
administrative claims data. I can tell you that my impression
as a clinician--I'm a practicing pulmonologist at a cancer
center--is that people of all ethnicities tend to withstand or
benefit from treatment to an equal extent, regardless of their
ethnicity.
It may be that some of the oncologists on my right can
further fill this in.
Dr. Brawley. If I may, sir, as a medical oncologist,
discuss this sort of thing, there is really no difference among
the races in terms of chemotherapy or radiation. There are
differences in terms of older people versus younger people, but
not between Blacks and Whites or Hispanics.
There will sometimes, however, be cultural differences in
people complaining. Certain cultures, for example, are much
more accepting of pain and not voicing it, for example.
Mr. Horn. Dr. Bach, in your article on early stage cancer
you note about African-American patients not receiving the more
effective treatment of surgical resection.
As part of this study, did you talk to the doctors? If not,
have there been any physician interviews to determine if racial
bias is a problem in medicine?
Dr. Bach. In response to your first question, our study was
based, as you mentioned, on administrative claims data, so we
were not able to either interview the patients involved or the
physicians.
The primary goal of the study was to get a population-based
estimate of the extent to which both disparities in treatment
existed and their impact on survival.
By taking that approach, we had a tradeoff. We believed
that our estimates are accurate, but we lost the ability to get
a good sense of why it was that there were treatment
differences.
I should tell you, there is a great deal of research into
the 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
men.
Would you explain why this is so vital to catch it early,
and if so, well, a lot of people don't take annual physicals
seriously until maybe they are about 30 or 35 and they sense
that they are aging rapidly. So what would your advice be?
Dr. Thompson. One of the things we know from the literature
is prostate cancer, based on what we know, is a little bit more
lethal in African-American males.
I know when I talk with people about the problem of
prostate cancer, many men are not aware of the issue. They
don't get PSA testing, they don't get rectal exams.
So we really do need to figure out a way to get the message
out as early as possible and really teach early screening and
treatment at an earlier age for all men dealing with issues of
testicular cancer, prostate cancer, all of those, just to make
them aware of the problem like we do with women with breast
self-exams, and the whole idea of getting early treatment for
breast cancer; educating the public, making them aware of the
problem, telling them what to do, and encouraging them to talk
with their doctor about getting the testing and getting the
screening.
Mr. Horn. Well, thank you.
Dr. Huerta, I believe earlier in this month I know now
thousands of people looked at the PBS series on end-of-life
care.
Is there difference in the preferences and access to
hospice care based on ethnicity?
Dr. Huerta. The question is if there is a difference
between people that choose different hospitals based on their
ethnicity?
Mr. Horn. On hospice care based on ethnicity.
Dr. Huerta. Yes, there are some differences. There are some
cultures, for example, the Latino or Hispanic culture, they do
not like to put their elders in hospices or nursing homes. They
believe that they are ``dumping their families'' and they are
not taking care of them. The same thing happens with Asian-
Americans.
There are definitely differences in cultures regarding the
use of these kinds of health facilities.
Mr. Horn. Thank you. I am going to close this out and thank
the staff, but before doing that, is there something that has
come to your mind that a colleague has said that you would like
to comment on?
We will start with you, Dr. Ruffin. Do you have anything to
add to the record?
Dr. Ruffin. Most of the questions have centered around, to
some extent, the elevation of the Office of Research on
Minority Health to center status. Much of Mr. Jackson's
testimony also had much to do with that same subject.
I think the only thing that I would say for the record is
that it be clearly understood that this is not something new
for the National Institutes of Health. In many instances where
issues have come to the forefront and where compelling data
warrant it, we have responded in a similar manner.
We need only look to the Genome Institute now as guidance
to that. We will see that a few years ago we were talking about
a genome center which was elevated to institute status.
Just last year, alternative medicine became of interest to
us in this country. Alternative Medicine, which was an office
just like the office that I now run, is now a center. Nursing
was a center, which is now an institute.
So in most instances at the National Institutes of Health
when we recognize the importance of an issue, we have elevated
that issue in many instances by elevating the status of that
unit.
So I just wanted to make it clear that this is not
groundbreaking. This is not a new idea for us, but a model we
have followed with many of the other entities in the National
Institutes of Health.
Mr. Horn. Thank you.
Dr. Freeman, anything to add?
Dr. Freeman. Yes, Congressman, three points related to the
discussion on prevention raised by Congresswoman Norton.
Primary prevention is believed to be able to prevent at
least 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
prevention.
If everyone at a certain age, perhaps 50 years old, had a
total colonoscopy, we could make a big dent into colon cancer
deaths, this is an important application of secondary
prevention.
No woman should die of cervical cancer. We still have 5,000
deaths a year. We can diagnose and treat that cancer before it
becomes invasive.
Breast cancer is now frequently being surgically removed on
at the point before it becomes invasive.
So this is one set of things. Prevention is critical. I
appreciate your comments.
The second thing is that not only are Dr. Bach's findings
important in the lung, but over the last 7 years since 1993 we
have had about a dozen peer-reviewed papers that show racial
differences in the treatment of cancer and other diseases, and
in the treatment of pain.
There are two studies that show that Hispanic and 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
nursing.
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
component.
So when I diagnose these cancers, I am between a sword and
the wall, because on one side my patient is telling me, ``Why
did you call me here?'' And on the other side, my hospital is
saying, ``Dr. Huerta, we have to pay for this? Are you doing
this kind of business to us?''
In other words, I am being punished for being a good
citizen.
Mr. Horn. That is a sad situation, to say the least.
I want to thank each of you. It has been a very good
hearing in terms of getting things on the record.
Let me thank the staff for both the majority and the
minority. On my left, your right, is Beth Clay, the majority
counsel. Back of her is T.J. Lightle, the legislative aide.
Our clerks for the majority are Bob Briggs and Mike Canty,
and then for the minority counsel it is Sarah Despres, the
minority legislative aide is Tania Shand, and the minority
clerk is Jean Gosa, 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.]