[House Hearing, 111 Congress]
[From the U.S. Government Publishing Office]
H.R. 1740, THE BREAST CANCER EDUCATION AND AWARENESS REQUIRES LEARNING
YOUNG ACT OF 2009; H.R. 1691, THE BREAST CANCER PATIENT PROTECTION ACT
OF 2009; H.R. 2279, THE ELIMINATING DISPARITIES IN BREAST CANCER
TREATMENT ACT OF 2009; AND H.R. 995, THE MAMMOGRAM AND MRI AVAILABILITY
ACT OF 2009
=======================================================================
HEARING
BEFORE THE
SUBCOMMITTEE ON HEALTH
OF THE
COMMITTEE ON ENERGY AND COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED ELEVENTH CONGRESS
FIRST SESSION
__________
OCTOBER 7, 2009
__________
Serial No. 111-69
Printed for the use of the Committee on Energy and Commerce
energycommerce.house.gov
_____
U.S. GOVERNMENT PRINTING OFFICE
74-102 PDF WASHINGTON : 2012
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COMMITTEE ON ENERGY AND COMMERCE
HENRY A. WAXMAN, California, Chairman
JOHN D. DINGELL, Michigan JOE BARTON, Texas
Chairman Emeritus Ranking Member
EDWARD J. MARKEY, Massachusetts RALPH M. HALL, Texas
RICK BOUCHER, Virginia FRED UPTON, Michigan
FRANK PALLONE, Jr., New Jersey CLIFF STEARNS, Florida
BART GORDON, Tennessee NATHAN DEAL, Georgia
BOBBY L. RUSH, Illinois ED WHITFIELD, Kentucky
ANNA G. ESHOO, California JOHN SHIMKUS, Illinois
BART STUPAK, Michigan JOHN B. SHADEGG, Arizona
ELIOT L. ENGEL, New York ROY BLUNT, Missouri
GENE GREEN, Texas STEVE BUYER, Indiana
DIANA DeGETTE, Colorado GEORGE RADANOVICH, California
Vice Chairman JOSEPH R. PITTS, Pennsylvania
LOIS CAPPS, California MARY BONO MACK, California
MICHAEL F. DOYLE, Pennsylvania GREG WALDEN, Oregon
JANE HARMAN, California LEE TERRY, Nebraska
TOM ALLEN, Maine MIKE ROGERS, Michigan
JANICE D. SCHAKOWSKY, Illinois SUE WILKINS MYRICK, North Carolina
CHARLES A. GONZALEZ, Texas JOHN SULLIVAN, Oklahoma
JAY INSLEE, Washington TIM MURPHY, Pennsylvania
TAMMY BALDWIN, Wisconsin MICHAEL C. BURGESS, Texas
MIKE ROSS, Arkansas MARSHA BLACKBURN, Tennessee
ANTHONY D. WEINER, New York PHIL GINGREY, Georgia
JIM MATHESON, Utah STEVE SCALISE, Louisiana
G.K. BUTTERFIELD, North Carolina
CHARLIE MELANCON, Louisiana
JOHN BARROW, Georgia
BARON P. HILL, Indiana
DORIS O. MATSUI, California
DONNA M. CHRISTENSEN, Virgin
Islands
KATHY CASTOR, Florida
JOHN P. SARBANES, Maryland
CHRISTOPHER S. MURPHY, Connecticut
ZACHARY T. SPACE, Ohio
JERRY McNERNEY, California
BETTY SUTTON, Ohio
BRUCE BRALEY, Iowa
PETER WELCH, Vermont
(ii)
Subcommittee on Health
FRANK PALLONE, Jr., New Jersey, Chairman
JOHN D. DINGELL, Michigan NATHAN DEAL, Georgia,
BART GORDON, Tennessee Ranking Member
ANNA G. ESHOO, California RALPH M. HALL, Texas
ELIOT L. ENGEL, New York BARBARA CUBIN, Wyoming
GENE GREEN, Texas JOHN B. SHADEGG, Arizona
DIANA DeGETTE, Colorado STEVE BUYER, Indiana
LOIS CAPPS, California JOSEPH R. PITTS, Pennsylvania
JANICE D. SCHAKOWSKY, Illinois MARY BONO MACK, California
TAMMY BALDWIN, Wisconsin MIKE FERGUSON, New Jersey
MIKE ROSS, Arkansas MIKE ROGERS, Michigan
ANTHONY D. WEINER, New York SUE WILKINS MYRICK, North Carolina
JIM MATHESON, Utah JOHN SULLIVAN, Oklahoma
JANE HARMAN, California TIM MURPHY, Pennsylvania
CHARLES A. GONZALEZ, Texas MICHAEL C. BURGESS, Texas
JOHN BARROW, Georgia
DONNA M. CHRISTENSEN, Virgin
Islands
KATHY CASTOR, Florida
JOHN P. SARBANES, Maryland
CHRISTOPHER S. MURPHY, Connecticut
ZACHARY T. SPACE, Ohio
BETTY SUTTON, Ohio
BRUCE L. BRALEY, Iowa
C O N T E N T S
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Page
Hon. Frank Pallone, Jr., a Representative in Congress from the
State of New Jersey, opening statement......................... 1
Prepared statement........................................... 4
Hon. Nathan Deal, a Representative in Congress from the State of
Georgia, opening statement..................................... 10
Hon. Roy Blunt, a Senator in Congress from the State of Missouri,
prepared statement............................................. 11
Hon. Jane Harman, a Representative in Congress from the State of
California, opening statement.................................. 12
Hon. Phil Gingrey, a Representative in Congress from the State of
Georgia, opening statement..................................... 35
Prepared statement...........................................
Hon. John D. Dingell, a Representative in Congress from the State
of Michigan, opening statement................................. 36
Hon. Michael C. Burgess, a Representative in Congress from the
State of Texas, opening statement.............................. 38
.................................................................
Hon. Kathy Castor, a Representative in Congress from the State of
Florida, opening statement..................................... 41
Hon. Donna M. Christensen, a Representative in Congress from the
Virgin Islands, opening statement.............................. 44
Hon. Joe Barton, a Representative in Congress from the State of
Texas, prepared statement...................................... 157
Hon. Bruce L. Braley, a Representative in Congress from the State
of Iowa, prepared statement.................................... 160
Hon. Joseph R. Pitts, a Representative in Congress from the
Commonwealth of Pennsylvania, prepared statement............... 163
Witnesses
Hon. Jerrold Nadler, Member of Congress.......................... 45
Prepared statement........................................... 48
Hon. Rosa L. DeLauro, Member of Congress......................... 51
Prepared statement........................................... 53
Hon. Debbie Wasserman Schultz, Member of Congress................ 56
Prepared statement........................................... 59
Stephen Taplin, M.D., M.P.H., Chief of the Applied Cancer
Screening Research Branch, Division of Cancer Control and
Population Science, National Cancer Institute, National
Institutes Of Health........................................... 62
Prepared statement........................................... 65
Otis Webb Brawley, M.D., Chief Medical Officer, American Cancer
Society........................................................ 79
Prepared statement........................................... 82
Jennifer Luray, President, Susan G. Komen for the Cure Advocacy
Alliance....................................................... 91
Prepared statement........................................... 94
Debra L. Ness, President, National Partnership For Women And
Families....................................................... 107
Prepared statement........................................... 109
George W. Sledge, Jr., M.D., Ballve Professor of Oncology,
Indiana University Medical Center, Cancer Pavilion............. 112
Prepared statement........................................... 114
Fran Visco, J.D., President, National Breast Cancer Coalition.... 119
Prepared statement........................................... 121
Marisa C. Weiss, M.D., President and Founder, Breastcancer.org... 135
Prepared statement........................................... 138
Submitted material
Statement of United Jewish Communities........................... 13
Statement of Lifetime Networks, submitted by Ms. Sutton.......... 164
H.R. 1740, THE BREAST CANCER EDUCATION AND AWARENESS REQUIRES LEARNING
YOUNG ACT OF 2009; H.R. 1691, THE BREAST CANCER PATIENT PROTECTION ACT
OF 2009; H.R. 2279, THE ELIMINATING DISPARITIES IN BREAST CANCER
TREATMENT ACT OF 2009; AND H.R. 995, THE MAMMOGRAM AND MRI AVAILABILITY
ACT OF 2009
----------
WEDNESDAY, OCTOBER 7, 2009
House of Representatives,
Subcommittee on Health,
Committee on Energy and Commerce,
Washington, DC.
The Subcommittee met, pursuant to call, at 11:47 a.m., in
Room 2123 of the Rayburn House Office Building, Hon. Frank
Pallone, Jr. [Chairman of the Subcommittee] presiding.
Members present: Representatives Pallone, Dingell, DeGette,
Schakowsky, Baldwin, Matheson, Harman, Barrow, Christensen,
Castor, Sarbanes, Space, Sutton, Braley, Deal, Whitfield,
Shimkus, Blunt, Pitts, Wilkins Myrick, Burgess, Blackburn,
Gingrey and Barton (ex officio).
Staff present: Sarah Despres, Counsel; Anne Morris,
Professional Staff; Elana Leventhal, Policy Advisor; Alvin
Banks, Special Assistant; Allison Corr, Special Assistant;
Aarti Shah, Counsel; and Chad Grant, Legislative Analyst.
OPENING STATEMENT OF HON. FRANK PALLONE, JR., A REPRESENTATIVE
IN CONGRESS FROM THE STATE OF NEW JERSEY
Mr. Pallone. We will start the hearing, and I do apologize
for the delay.
Today the Subcommittee is meeting to review four bills
relating to breast cancer: H.R. 995, the Mammogram and MRI
Availability Act of 2009, sponsored by Congressman Nadler of
New York; H.R. 1691, the Breast Cancer Patient Protection Act
of 2009, sponsored by Ms. DeLauro of Connecticut; H.R. 1740,
the Breast Cancer Education and Awareness Requires Learning
Young Act of 2009 by Congresswoman Wasserman Schultz from
Florida; and H.R. 2279, the Eliminating Disparities in Breast
Cancer Treatment Act of 2009 sponsored by our own Member,
Congresswoman Castor also from Florida. And I want to thank all
the sponsors of these bills for the hard work on raising
awareness about these very important issues, and I should also
point out that they have been spending some time over the last
6 months trying to have this Subcommittee have this hearing and
the reason for the delay was of course we were dealing with
health care reform.
Now, aside from the non-melanoma skin cancer, breast cancer
is the most commonly diagnosed cancer in women. The NIH
estimates that over 190,000 new cases of breast cancer will be
diagnosed in women in 2009, and though we have seen breast
cancer death rates decline since 1990, still approximately
40,000 women will succumb to the disease this year. And that is
the work of advocacy groups and the key sponsors of the bills
today is so crucially important. We have made great strides in
detecting and treating breast cancer but there is still much
more to be done and much more to learn.
Although all of these bills address concerns related to
breast cancer, they all focus on different aspects of the
disease from screening and early detection to treatment and
quality improvement, and all they all raise very important
issues with respect to how breast cancer patients or any other
patients for that matter are being treated in the medical
environment we live in today. Not every American has access to
good preventive services. Not every American has the good
fortune to have an insurance plan that covers the medical care
they need, and that is why we are working hard trying to pass
health reform legislation that will improve access to quality
and affordable health care for every American. If enacted,
health care reform legislation will dramatically improve our
efforts in the battle against breast cancer.
Particularly important are the insurance reforms. In
drafting America's Affordable Health Choices Act, we took the
same tack as Ms. DeLauro did in taking decision-making
authority out of the hands of health insurers and putting it
back in the hands of patients and their doctors where it
belongs. In addition, the subsidies offered in the exchange and
expansion of the Medicaid program under health care reform will
cover childless adults and mean that many low- and middle-
income women who might not have access to health insurance
today will be covered in the future for the first time, and
that means they will be able to access a doctor and receive
treatment when they need it.
A key component to winning the battle against breast cancer
is effective and appropriate screening, which both Ms.
Wasserman Schultz and Mr. Nadler's bill seek to address. Early
detection of breast cancer has long been acknowledged as an
effective way to improve outcomes. In fact, studies have shown
that the 5-year survival rate in women who have received timely
treatment due to early detection is at 98 percent, and that is
why the U.S. Preventative Services Taskforce has recommended
that all women over the age of 40 have a mammography screening
every 1 or 2 years. Now, I agree with my colleagues that early
detection and prevention is key to survival, and that is why in
health reform we bolster the very important work that the U.S.
Preventative Services Taskforce does by providing increased
funding so that they can analyze more studies and make more
prevention recommendations. The evidence-based recommendations
that receive the highest ratings from the taskforce such as
mammography screenings will be covered by all insurance
carriers participating in the health insurance exchange and by
Medicaid, and while Medicare already covers these services
under health reform, beneficiaries would no longer face cost-
sharing requirements to receive them.
In addition in health reform, we must also improve the
quality of care that is provided in this country as Ms. Castor
is seeking to do with her bill. Tens of thousands of Americans
die to preventable medical errors every year. Billions of
dollars are wasted on low-quality care. We as a Nation must do
better. Improving quality is a concept we picked up in health
reform as well. We require the Secretary to establish national
priorities for quality improvement and we also create a center
for quality improvement. This center will develop and encourage
the use of best practices for quality assurance and will
provide implementation grants to those who are already doing
innovative work to improve the quality of care. Using breast
cancer as an example, we can and must do better to ensure that
all Americans receive the highest quality care and that we
collect data that will help us continuously improve as more
information becomes known about the medical system and specific
diseases.
I want to thank all of our witnesses. I know we are going
to start after opening statements with the Members' panel. I
would say I guess it is clear from my opening statement that in
many cases some of the things in these bills hopefully will be
addressed in the larger health care reform bill but I don't
mean to suggest that that takes away from the need for us to
have this hearing today or to move forward with these bills. It
may very well be that some things are included and some are
not, and so this is a legislative hearing and the intention
would be to move these bills, but we also have to see what is
included in the health care reform as well.
[The prepared statement of Mr. Pallone follows:]
Mr. Pallone. So thank you, and with that I would yield to
our ranking member, Mr. Deal.
OPENING STATEMENT OF HON. NATHAN DEAL, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF GEORGIA
Mr. Deal. Thank you, Chairman Pallone. Thank you for
holding the hearing and thanks to our colleagues for appearing
before us today and all the other distinguished witnesses whose
testimony we will certainly look forward to hearing.
All of us, I think, understand the importance of the topic
that is before us today. Many of us have cosponsored many of
the legislative agenda items that are before the Committee. I
for one have cosponsored H.R. 1740 because I think it is
important for early diagnosis and treatment of breast cancer as
well as the continued effort to educate young women about this
particular disease. Now, we have dealt with a variety of issues
over the years and most recently highlighted by testimony from
Ranking Member Barton about a constituent who in the midst of
dealing with breast cancer had her policy canceled. The House
has dealt with that when we passed H.R. 758 by an overwhelming
vote of 421 to 2, so we have begun the process, I think, of
dealing with many of the issues surrounding the treatment and
diagnosis of breast cancer.
But as we continue to deal with how we can best combat this
disease, I believe that as stewards of the taxpayers' dollars
that we must make sure that these dollars are being most in the
most appropriate way, particularly those that are with the NIH
and CDC. We must assure that these limited resources are
appropriately expended to fight all diseases including breast
cancer, and I have particular concerns about some of the
expenditures in both NIH and CDC that would appear to be far
beyond the normal pale of what people regard as important
research for those two agencies to be supervising.
So I look forward to the testimony and I welcome our
colleagues on the first panel. I yield back.
Mr. Pallone. Thank you, Mr. Deal.
Let me mention to everybody, that is just a recess. We are
not voting, just so you know.
I recognize the gentlewoman from Colorado, Ms. DeGette.
Ms. DeGette. Thank you very much, Mr. Chairman, and out of
respect for our intrepid and courageous witnesses in our first
panel, I will waive my opening statement and submit my very
excellent statement that everyone will be able to read in the
record. Thank you.
Mr. Pallone. Thank you.
Next is the gentleman from Missouri, Mr. Blunt.
Mr. Blunt. Thank you, Mr. Chairman. I do have a statement.
I will submit it for the record as well. I am pleased we are
having this hearing. I am pleased to be a cosponsor of H.R.
1740, the EARLY Act, with my good friend, Ms. Wasserman
Schultz, and look forward to the hearing.
[The prepared statement of Mr. Blunt follows:]
Mr. Pallone. Thank you.
The gentlewoman from California, Ms. Harman.
OPENING STATEMENT OF HON. JANE HARMAN, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF CALIFORNIA
Ms. Harman. Thank you, Mr. Chairman. I will be brief but I
want to salute our colleagues but especially our colleague,
Debbie Wasserman Schultz, for her courage, her passion and her
example. Many of us wore pink today in solidarity with her. We
are strong supporters of her bill. Hopefully we will find a way
now that it is in acceptable form to Committee staff to include
it in the health care bill with the robust public option that
we are going to pass on the House Floor one of these days.
Just briefly, I have a brother who is an oncologist. I
couldn't have been prouder when he was given the Healer of the
Year award by Marin County, California, for his work on breast
cancer. Breast cancer attacks oldies, grandmas like me, but it
also attacks beautiful young women like Debbie Wasserman
Schultz and hopefully not my daughters, who are a bit younger
than she is, and hopefully not my granddaughter, who is a lot
younger then she is. So this is something we all have
experience with. All of us know people who have breast cancer.
Hopefully they all will be survivors and most of us are very
responsive to the Susan G. Komen and other efforts to raise
awareness.
I just want to say that these bills are all good. I am
rousingly enthusiastic about Debbie Wasserman Schultz's bill
and in that context I would like to ask unanimous consent to
insert in the record a statement by the United Jewish
Communities in support of that bill.
[The information follows:]
Mr. Pallone. Without objection, so ordered. I guess I
didn't get the memo to wear the pink. I see Jerry did. But I
was given a pink bat in lieu of a gavel today, so maybe we will
use that.
Ms. Harman. Well, Jerry Nadler represents two of my kids on
the west side of New York, one of whom is female, so it is a
good thing that he has high awareness of this. I just want to
add a couple of facts. One, advances in cancer research and
treatments have greatly improved survival rates. In the 1960s,
a woman diagnosed with breast cancer had only a 63 percent
chance of living longer than 5 years. Now it is 89 percent.
Hispanic and African-American women have a lower survival rate
than the rest of the population, so clearly we have a lot of
work to do on reducing racial disparities.
And finally, next Friday, October 16, is National
Mammography Day. It is a day when radiologists provide free or
discounted screening mammograms, and hopefully the women in my
district and all those can hear us at this hearing will take
advantage of this. Breast cancer is a terrible opponent but it
is a beatable one. I yield back, Mr. Chairman.
Mr. Pallone. Thank you.
Next is the gentleman from Georgia, Mr. Gingrey.
OPENING STATEMENT OF HON. PHIL GINGREY, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF GEORGIA
Mr. Gingrey. Mr. Chairman, thank you. I did have an opening
statement I would like to give.
Deaths from breast cancer among women have dropped more
than 2 percent each year since 1990 due in large part to the
intervention of improved treatments and early detection of the
disease. A study published in 2008 found the United States has
the highest rate of survival for breast and prostate cancers in
the world. These statistics are just a small example of the
quality that makes our health care system a leader throughout
the world. Unfortunately, being the best is not the entire
story. While our health care system is a benefit to many with
breast cancer, the disease is still the second most common
cancer that women are forced to deal with in the United States.
It is estimated that 192,000 new cases of invasive breast
cancer are expected to be diagnosed this year and roughly
40,000 women are expected to die from the disease in 2009,
40,000. These are sobering statistics that beg our thoughtful
consideration.
Therefore, I would like to commend the efforts of our
panelists and all those who strive each and every year to bring
attention and awareness to a disease that has impacted many of
our friends and colleagues, some of whom are sitting here with
us today as we well know. I applaud their efforts to raise the
awareness and early detection of breast cancer among our
Nation's patients, and I look forward to hearing their
testimony today.
However, we must also take a step back and look at the
legislation before us in the context of the overall reform plan
reported from this Committee at the end of July. From what I
surmise, two of the bills before us today address federal
requirements on insurance plans that would in essence I think,
become moot because of H.R. 3200. If H.R. 3200 were to become
law, this Congress would not be deciding what benefits
insurance companies must contain or what measures should be
used to ensure non-citizens cannot use taxpayer dollars to
purchase health insurance. Those would be the purview of a
political appointee with little regard for the will of the
people.
After the outpouring of concern and constructive criticism
for the President's plan during the August recess, I had hoped
to come back to these hallowed walls and found a new Congress
open and willing to work in a bipartisan fashion for the
benefit of our constituents. Today as we sit here with the
specter of H.R. 3200 hanging over our heads, it is looking more
and more that that hope to be a false one. Mr. Chairman, it
seems the lessons of August have not been learned by some of my
colleagues on the other side of the aisle. I yield back my
time.
Mr. Pallone. Thank you, Mr. Gingrey.
Next is our chairman, Mr. Dingell.
OPENING STATEMENT OF HON. JOHN D. DINGELL, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF MICHIGAN
Mr. Dingell. Mr. Chairman, I thank you. Good morning.
I would first like to thank you for holding this hearing.
It is an important one and it is an opportunity to learn more
about the four breast cancer bills before us today. Breast
cancer is the second most common type of cancer amongst women
in the United States so it is important for us to continue a
vigorous examination of how to best prevent and treat this
disease. In 2009, an estimated 192,370 new cases of invasive
breast cancer will be diagnosed among women, and approximately
40,107 of these women are expected to die from the disease. An
additional 1,920 cases of breast cancer are expected to occur
amongst men. In my home State of Michigan alone, there will be
an estimated 6,480 new cases this year and 1,350 deaths. It is
estimated that about $8.1 billion is spent in this Nation every
year for the treatment of breast cancer. While real strides are
being made against the disease, the 5-year survival rate is 98
percent when detected early but too many women continue to lose
the battle against breast cancer for want of proper treatment
and proper early diagnosis.
H.R. 995 would require a group health plan that provides
diagnostic mammography for women over 40 to also cover an
annual screening mammography and an MRI for high-risk women.
The National Cancer Institute has recommended that women 40 and
over should have a mammogram once every 1 or 2 years. Doctors
and patients should make the decision whether to have a
mammogram based on risk factors, not the cost.
Another bill under consideration is H.R. 1691, the Breast
Cancer Patient Protection Act, of which I am a sponsor. H.R.
1691 would ensure that women undergoing mastectomies would be
guaranteed 48 hours of hospital care unless the provider and
the patient determine a shorter stay is appropriate. This is
again aimed at dealing with the problem of drive-through
mastectomies and other things of that character as provided by
the health insurance providers of this country. The legislation
would also protect physicians who provide quality care for
breast cancer patients from retaliation by health maintenance
organizations and other insurance companies seeking to maximize
profits at the expense of patient care. This bill is of great
importance to me because a member of my staff in Michigan was a
victim of these unscrupulous insurance company practices when
she was sent home after a mastectomy in considerable pain with
no support to manage her condition. She ultimately succumbed to
her cancer but the heartless way in which her insurance company
treated her was an outrage. Guaranteeing that treatment
decisions are made by the provider in consultation with the
patient, taking into account the patient's unique medical
needs, is the cornerstone of good, successful and, believe it
or not, inexpensive or the least expensive medical care.
H.R. 1740 would direct the CDC to develop and implement a
national education campaign about the threat that breast cancer
poses to young women of all ethnic and cultural backgrounds and
the particular heightened risks of certain groups of our women.
It is important that we examine the ways to educate our young
women and medical professionals about breast cancer in young
women.
The final bill considered today, H.R. 2279, would address
the disparities in breast cancer diagnosis and treatment by
requiring providers to report their practices to encourage
doctors to offer adequate care to all irrespective of race,
income, age or health insurance status.
Together these bills will protect women from drive-through
mastectomies as well as advanced breast cancer protection and
treatment amongst high-risk communities, young populations and
minorities. This hearing coincides with National Breast Cancer
Awareness Month and will shine light on issues of great
importance to women and their families. I look forward to the
testimony of today's witnesses and I commend you for the
hearing, and I thank you, Mr. Chairman.
Mr. Pallone. Thank you, Chairman Dingell.
Next is one of the sponsors of the bill--oh, I am sorry.
Next is the gentleman from Texas, Mr. Burgess.
Mr. Burgess. Mr. Chairman, in the interest of time, and I
know we have got votes, I will submit my statement for the
record.
[The prepared statement of Mr. Burgess follows:]
Mr. Pallone. Thank you, Dr. Burgess.
Next is one of our prime sponsors of the legislation, the
gentlewoman from Florida, Ms. Castor.
OPENING STATEMENT OF HON. KATHY CASTOR, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF FLORIDA
Ms. Castor. Chairman Pallone, thank you very much for
convening this timely hearing on breast cancer legislation
during National Breast Cancer Awareness Month.
Breast cancer is still a brutal killer in America but we
are going to continue to fight and we are going to make
progress, and we are going to make progress due in large part
to the leaders who are here today, to my colleagues here on the
Health Subcommittee but to these brave Members of Congress that
represent hundreds of thousands of people and many, many women
who have struggled with breast cancer. Congresswoman Rosa
DeLauro, Congressman Jerry Nadler and my good friend from
Florida, Congresswoman Debbie Wasserman Schultz. Congresswoman
Wasserman Schultz has been a fine example of perseverance and a
great role model for anyone that has been diagnosed with breast
cancer, and I am proud to be a cosponsor of her bill.
I am also eager to hear from the top experts in the field
today on our latest legislation, and Mr. Chairman, our
colleague, Congresswoman Dr. Donna Christensen, is my partner
on my bill, H.R. 2279, the Eliminating Disparities in Breast
Cancer Treatment Act, that we will consider today. I would like
to thank her for all of her attention to disparate diagnosis
and treatment that still plagues health care in America.
It is not secret that quality health care in the United
States is not equally accessible to all of our communities. As
a Committee, we have worked diligently for the better part of
this year to improve health care in America and to make quality
care affordable and accessible for all, and we are closer to
that than ever before but we still have these underlying issues
of disparate diagnosis and treatment that must be addressed
directly, and one of the most disturbing involves breast cancer
in women of color. Overall breast cancer survival rates in the
last two decades have improved with one exception: minority
women. Women of color suffer from significantly higher death
rates after diagnosis than white women. The American Cancer
Society reports that delays in receiving care after breast
cancer diagnosis are greater for African-American women than
for white women. African-American women with breast cancer are
less likely to receive standard therapy than white women.
African-American and Hispanic patients are significantly more
likely than white patients to be diagnosed at a more advanced
stage of breast cancer. And regardless of insurance status,
African-American women are almost two times more likely to be
diagnosed with an advanced stage of breast cancer than white
women and Hispanic women are about one and a half times more
likely to be diagnosed with an advanced stage of breast cancer
than white women. African-American women are 10 percent more
likely not to receive tests to determine if breast cancer has
spread to axillary underarm lymph nodes. This screening is
essential to preventing the spread of cancer to other parts of
the body. Health insurance status, race, income and educational
background are directly linked to irregularity in administering
this vital screening. Substantial disparities remain regarding
cancer diagnosis and treatment.
So in order to eliminate this unacceptable variance in
treatment and quality care, it is necessary that we create real
incentives and requirements for medical professionals to
provide the best care. All patients should receive the most
modern and high-standard treatment for their conditions. So our
bill seeks to put an end to the inequities in treatment for
breast cancer and will help ensure that every patient has
access to the most appropriate care. The legislation will
implement breast cancer treatment performance measures,
requiring the Secretary of HHS to work with a national quality
forum to develop standard best practices for breast cancer
treatment. These measures will address patient outcomes, the
process for delivering medical care related to breast cancer
treatment, patient counseling and engagement in decision-
making, overall patient experience, physician care coordination
and then the Secretary will develop a 6-year breast cancer
treatment quality performance initiative. In years 1 through 3,
physicians will be encouraged to follow the new recommendations
and report their practices on a voluntary basis. In years 3
through 6 reporting will be required and the Secretary will
evaluate the care that is furnished to patients. Low-quality
treatment from providers will result in reduced Medicare
payments for those physicians. Improvements in treatment will
be recognized and payments will be scaled based on the care
provided. The Secretary will be required to report to Congress
so we can keep track of the progress.
Mr. Chairman, this legislation will help eliminate
disparities in the treatment of breast cancer. We must continue
to use all of our expertise and modern tools to fight this
brutal killer, improve diagnosis and improve treatment. It will
save lives, it will save money and it will save heartache.
Thank you very much. I look forward to hearing from the
panels.
Mr. Pallone. Thank you.
The gentleman from Illinois, Mr. Shimkus.
Mr. Shimkus. Thank you, Mr. Chairman. I want to welcome my
colleagues here. They are all sincere and respected public
policy experts, and I appreciate their attendance, and I yield
back my time.
Mr. Pallone. Thank you.
The gentlewoman from Illinois, Ms. Schakowsky.
Ms. Schakowsky. Thank you, Mr. Chairman. I will put my full
statement in the record, but I do want to thank all of my
colleagues, Debbie Wasserman Schultz and Rosa DeLauro and Jerry
Nadler and Kathy Castor for the wonderful bills that I am proud
to be a cosponsor of.
I just do want to tell you that Chicago has one of the
largest disparities in death rates as a result of breast
cancer. A report released in 2007 showed that breast cancer
kills minority women at a rate of 68 percent higher than white
women, mostly because of inequities and access to quality and
affordable care. And I want to give a shout-out to an
organization. We are actually going to have a briefing with
them next week. Pin-A-Sister is a Chicago-based organization
started by Access Community Health Center. Every Mothers Day
the organization coordinates an event in black and Latino
churches. The women in the congregation are invited to place a
pin on a sister to empower her to learn more about breast
cancer and to show she is not alone in her experience with
breast cancer. But they need help.
These bills that you have sponsored and that I feel certain
that will pass are really going to help them and all women,
those facing breast cancer and potentially those who may face
it in the future. Thank you very much. I yield back.
Mr. Pallone. Thank you.
The gentlewoman from Tennessee, Ms. Blackburn.
Mrs. Blackburn. Thank you, Mr. Chairman, and I thank our
colleagues for the good work that they have done and the
attention that they have brought to this issue and we are
delighted that you are here. I will place my full statement in
the record.
I do want to highlight some of our volunteers in Tennessee
that have done exceptional work on the issue of breast cancer.
Our Tennessee Breast Cancer Coalition really has taken the lead
in Tennessee. We do know that the work we did last year on the
Breast Cancer Environmental Research Center Act was very
important. This is something the environmental pressures that
come to bear on Tennessee women is something that has gained a
lot of attention in our State and has caused a lot of concern,
and we have several facilities that are doing a great deal of
wonderful research--the UT Cancer Institute, the Vanderbilt
Ingram Cancer Center and the Minnie Pearl, Sarah Cannon Center
and so I highlight the good work that is being done there.
In Tennessee, we have 3,970 new cases of breast cancer that
will be diagnosed this year, and 910 women will probably end up
losing their life to this disease. We note the legislation
before us will help assist the good ongoing research equally in
the manner that the legislation we passed last year did and we
look forward to eradicating the disease and certainly making a
difference in the lives of men and women that are affected by
this, and I thank you for the hearing and yield my time.
Mr. Pallone. Thank you.
The gentleman from Utah, Mr. Matheson.
Mr. Matheson. Thanks, Mr. Chairman. I will submit my full
written statement for the record, but just very briefly, I
would point out that it is appropriate we have four different
bills today. This is a complicated issue and there are a lot of
aspects in terms of addressing and trying to fight this disease
that we should consider as a Committee, and I want to thank the
lead sponsors, Representative Castor, Representative Nadler,
Representative DeLauro and Representative Wasserman Schultz for
championing this issue. Congresswoman DeLauro has been such a
great advocate and I was an original cosponsor. I remember we
passed this in the House last time and hopefully we get it
across the finish line this time.
You know, a lot of people point out different populations
that are affected differently, and I would just highlight one
interesting demographic in my home State where in Utah the
incidence of breast cancer is actually much lower than the
national average and yet the mortality rate is about the same,
and that is because we have a problem where it is usually
diagnosed at later stages. That is why Congresswoman Wasserman
Schultz's bill is of particular interest to me that will help
in my State. And it just points out that you hear these opening
statements from people around the country with different
constituencies and whatnot and there are so many ways we need
to try to attack this issue.
I commend the Committee for holding this hearing and
bringing all these folks together. I look forward to advocating
for all these bills. Mr. Chairman, I want to once again thank
my colleagues for being here and I will yield back my time.
Mr. Pallone. Thank you.
The gentlewoman from the Virgin Islands, Ms. Christensen.
OPENING STATEMENT OF HON. DONNA M. CHRISTENSEN, A
REPRESENTATIVE IN CONGRESS FROM THE VIRGIN ISLANDS
Mrs. Christensen. Thank you, Mr. Chairman, and I thank you
and the ranking member for holding this hearing on such an
important issue and making, we hope, this Breast Cancer
Awareness Month a decisive one in the fight against breast
cancer. I would like to welcome my colleagues as well.
With these bills, we not only expand access to mammography
and other often lifesaving screening technologies but we
protect and ensure the health care coverage for breast cancer
patients, educate women earlier about breast cancer and
eliminate the breast cancer disparities that have a disastrous
impact on far too women of color. I would like to thank
Representatives Nadler, DeLauro, Castor, with whom I worked on
2279, and especially Congresswoman Debbie Wasserman Schultz,
herself a breast cancer survivor, especially for your bill's
emphasis on educating younger women earlier about breast
cancer.
It is unacceptable that today one in every eight women will
have invasive breast cancer at some point in her life and that
breast cancer remains the second leading cause of cancer death
for women in this country, but as grim as these statistics are,
they are even worse when you consider racial and ethnic
disparities in breast cancer incidence and mortality and
prevention. For example, while African-Americans have lower
breast cancer incidence rates than their white counterparts,
they are more likely to die from the disease. Latina, American
Indian and Asian-American women are not only disproportionately
more than likely than their white counterparts to not have a
mammogram in the recent 2 years, but finally, while breast
cancer death rates have been on the decline since 1990 overall,
we find that that the 5-year breast cancer survival rate for
American Indian women is lower than any other population group
of women.
So these statistics suggest that while we have made great
progress in the fight against breast cancer much to the credit
of the witnesses we will hear from today and continuing with
the legislation before us. We have a long way to go and I look
forward to today's testimonies and discussions and anticipate
that this hearing will serve as the impetus needed to take our
collective fight against breast cancer and every cancer really
to the very next level, and I thank you. I yield back.
Mr. Pallone. Thank you.
The gentleman from Maryland, Mr. Sarbanes.
Mr. Sarbanes. Thank you, Mr. Chairman. I will be very
brief.
These are all incredibly important measures, and I just
want to salute our colleagues and my colleague, Kathy Castor,
for their work on this. I am embarrassed, Debbie, that I am not
wearing any pink today, but I am turning pink with
embarrassment at that, so that will have to do.
Anyway, congratulations on your work. We look forward to
your testimony.
Mr. Pallone. Thank you.
The gentleman from Georgia, Mr. Barrow. I will mention to
members that we have three votes, a 15--I am sorry, four votes.
There is a 15 and then three 5s. Mr. Barrow, if you would like
to make an opening, go ahead.
Mr. Barrow. Thank you, Mr. Chairman. I would.
It is estimated that one in eight women will develop breast
cancer over their time and it is the leading cause of death
among women age 45 and older. This disease is far too
preventable and too treatable for these numbers to be so high.
I know because my mother, who turns 89 years of age today, is a
35-year survivor of breast cancer. Curing breast cancer is a
huge challenge and it can only happen with good science,
adequate funding, effective treatments and greater awareness
and education.
These bills we are addressing here today represent small
but important steps along the way. October is National Breast
Cancer Awareness Month. This gives us an excuse to come here
today and work on this legislation but I look forward to the
day when this month will not be a time to raise awareness but a
time to celebrate how our collective efforts actually led to
the eradication of breast cancer. I want to thank Chairman
Pallone and Ranking Member Deal for addressing this important
issue in our Subcommittee as well as Representatives Nadler,
DeLauro and especially my colleagues, Congresswoman Wasserman
Schultz and Congresswoman Castor, for introducing these
critical bills that promote breast cancer prevention, research,
treatment and quality of care. Thank you, and I yield back.
Mr. Pallone. Thank you. I think that concludes our opening.
Now, we could get a couple of you in. I don't think we can get
all three of you. I will dispense with my remarks other than to
say the three of you are wonderful, and two of you are cancer
survivors. All three of you have been champions of this and
other issues so effectively. If anybody can get anything done,
it is the three of you, and I start with Congressman Nadler.
STATEMENTS OF THE HONORABLE JERROLD NADLER, MEMBER OF CONGRESS;
THE HONORABLE ROSA L. DELAURO, MEMBER OF CONGRESS; AND THE
HONORABLE DEBBIE WASSERMAN SCHULTZ, MEMBER OF CONGRESS
STATEMENT OF JERROLD NADLER
Mr. Nadler. Thank you, Chairman Pallone, Ranking Member
Deal and the members of the Subcommittee. Thank you for
convening this hearing and for inviting me to testify today
about H.R. 995, the Mammogram and MRI Availability Act.
I also want to thank the breast cancer advocacy groups for
coming to testify about the work they do, the problems we face
in the fight against breast cancer and the ways in which they
and their organizations are helping to educate, screen, treat
and care for women living with and at risk of developing breast
cancer.
We all know people near and dear to us who have battled
breast cancer, my wife among them for the last 3 years. We all
know the statistics. Breast cancer is the second leading cause
of death of women in the United States, the leading cause of
death of women age 40 to 49. This year alone, more than 40,000
women in the United States will die from breast cancer. More
than 192,000 new cases will be discovered.
We also know that in addition to the need to find a cure,
prevention is the difference between life and death. In 2005,
the National Institute of Cancer Study confirmed that
mammograms contributed to a pronounced drop in the number of
breast cancer deaths. Study after study has found that yearly
mammograms, annual mammograms done from age 40 on help find
tumors at their smallest and most treatable stage. That is why
the American Cancer Society and others recommend that women age
40 and older should have yearly mammograms, and that is why I
introduced H.R. 995, a bipartisan, commonsense bill to ensure
coverage of annual mammograms for this population of women.
While many insurance plans cover diagnostic mammograms,
that is, mammograms used to diagnose whether an already known
mass or tumor is cancerous, many insurance plans do not cover
screening mammograms for the purpose of detecting tumors in the
first place. Based on the research and what we know about
breast cancer, this is simply unacceptable, and women and their
families deserve better. We would save many, many lives if all
plans covered annual screening mammograms for women of age 40
and above.
As we have learned, mammograms on their own do not detect
every malignant tumor. For women at particularly high risk of
breast cancer, women who have a strong family history of breast
cancer where a woman's mother, grandmother, sister or daughter
was diagnosed with breast cancer or those women with a BRCA1 or
2 genes who have a genetic predisposition to developing the
disease, MRIs help detect more tumors at their earliest, most
treatable stages that mammograms cannot detect. For this
population of women who are particularly susceptible and at
high risk of developing breast cancer, the American Cancer
Society recommends an annual mammogram and an annual MRI. As
with coverage for mammograms, insurance companies do not
routinely cover screening MRIs, even for this high-risk
population of women.
H.R. 995 would make these important screening exams
available to the women who need them most. So, in other words,
what this bill would do is to say that any health insurance
plan that provides coverage for diagnostic mammograms must
provide coverage for screening mammograms for women annually
over 40 and for the high-risk population of women over 40 for
MRIs annually as well. While women should consult a doctor
before undergoing a mammography or MRI, nothing in this bill
requires a woman to seek a doctor's referral prior to receiving
one of these lifesaving screening exams nor does the bill
require women to undergo any tests unless she chooses to do so.
As the Subcommittee well knows, Congress is on course to
pass historic health care reform bill this year. That
legislation contains important provisions that would eliminate
copays and deductibles for recommended prevention services.
These recommendations should include screening mammograms.
However, neither House of Congress has passed the legislation.
Furthermore, even if passed, delays upward of 5 years or more
could continue to limit women's access to these exams.
Therefore, passage of major health reform won't necessarily
prevent these women from continuing to fall through the cracks.
Additionally, the prevention measures likely to be included in
the final health care reform package do not currently include
coverage for MRIs for high-risk women. Thus, the women most at
risk, the women with a strong family history of the presence of
breast cancer as well as those who are genetically predisposed
to the disease will continue to be left without access to these
lifesaving exams. Only passage of H.R. 995 either as a
standalone bill or by inclusion of its provisions in the
comprehensive bill that this Committee is helping to shape now
will ensure that these women have the coverage they need on
which their lives may very well depend.
Mr. Chairman, with the passage of this bill or with its
inclusion in the overall bill when that passes, women age 40
and older as well as those women at particularly high risk of
developing breast cancer will no longer continue to fall
through the cracks. With this legislation, these women will be
guaranteed coverage for life-saving screening exams. As we wait
to find a cure, ensuring coverage for screening mammograms for
all women age 40 or older and where indicated for the high-risk
population of women over 40 for MRIs as well could mean
tremendous benefits for many, many women and their families in
the fight against breast cancer.
Mr. Chairman, I thank you again for giving me an
opportunity to discuss this bill, H.R. 995, the Mammogram and
MRI Availability Act, and for holding this important hearing on
women's health. I look forward to working with you as well as
my colleagues on the Subcommittee to pass this legislation in
one or the other form. Thank you very much.
[The prepared statement of Mr. Nadler follows:]
Mr. Pallone. Thank you.
Congresswoman DeLauro.
STATEMENT OF ROSA L. DELAURO
Ms. DeLauro. Thank you very much, Mr. Chairman, and thank
you, Ranking Member Deal, for hosting this effort today. I also
want to say thank you to this Subcommittee and to the full
Committee on a bipartisan basis that have supported the Breast
Cancer Patient Protection Act, and I appreciate that as the
women around the country do. Also, my colleagues, Jerry Nadler,
Debbie Wasserman Schultz, all of whom have--Kathy Castor, Donna
Christensen, try to come to grips with what is a singularly big
health issue for women around the country, and I would just say
to Debbie that her courage and her tenacity in this effort is
well known, and she clearly is a voice for young women. To all
of the advocates who are here today, thank you. We can't do
this without you. It is an honor to work with you and your
efforts again also keep us strong and determined to make sure
we pass good legislation.
It was 13 years ago that Dr. Kristin Zarfos, who is a
Connecticut breast surgeon, told me that HMOs were forcing her
to discharge her patients before they were ready, sometimes
just hours after a mastectomy. She testified before this
Subcommittee last year that insurers suddenly refused to pay
for reasonable hospital stay regardless of any underlying or
complex medical problems that patients might have--diabetes,
heart disease. This is still happening. Patients continue to be
discharged with no consideration for adverse reactions to
anesthesia, postoperative pain or even when they are awake
enough to understand their discharge instructions. At the
Subcommittee hearing last year that was convened, we had a
breast cancer patient, Alva Williams. She testified she had a
mastectomy on March 6, 2006, was sent home several hours after
surgery. The insurance company would not cover an overnight
stay. The family didn't receive proper training on how to care
for her. She developed an infection in the incisions and
recovering from that infection caused Ms. Williams'
chemotherapy treatments to be delayed 6 weeks. Arizona--a
woman's story on Lifetime TV website: ``I had a double
bilateral mastectomy in June of this year. I was discharged
within 2 hours after surgery. I had severe complications that
later resulted in being readmitted to the hospital within the
first week post surgery.'' The stories go on, and my testimony
has been submitted. There is a woman in Kansas City whose
husband was a physician and she found that it was difficult
even with a caregiver who was a physician.
So this is happening across the Nation, which is why in my
view we need to pass the Breast Cancer Patient Protection Act.
It says that simply, very simply, adequate recovery time in the
hospital should not be negotiable. The last thing that any
woman should be doing at this time is fighting with their
insurance company. The bill does not mandate, it does not
mandate a 48-hour hospital stay. If a patient chooses to go
home sooner, fine. Nor does it set 48 hours as a maximum amount
of time a woman can stay in the hospital. It says that any
decision in favor of shorter, longer hospital stay would be
made by a patient and her doctor and not by an insurance
company.
I have been in the hospital many months, and let me just
tell you, it is not for everyone. It is not where you want to
spend your time. But it is important to know that successful
outpatient mastectomy programs have been extremely careful to
empower their patients through education, monitoring outcomes
and working intensely to minimize complications.
Last year, 421 Members of Congress voted to enact this
legislation, bipartisan support. We introduced it this year, my
colleague, your colleague, Joe Barton. Mr. Dingell has spoken
out on it. Lifetime Television has a petition calling for the
Breast Cancer Patient Protection Act's passage. Nearly 24
million people have signed on to this petition. We have 236
cosponsors. Senator Snowe, Senator Landrieu, 17 cosponsors in
the Senate. We are ready to do this. We need to move forward.
We have a number of supportive advocacy groups out there.
I will just conclude by saying to you that let us do this.
Let us do this for the women of this Nation. What happened on
the Senate side to us last year was the insurance companies. We
passed it 421 votes. That tells you something about the need.
It tells you something about the support. Let us do it again in
the House and let us make sure that our Senate colleagues do
the same thing. Thank you so much for letting me speak to you.
[The prepared statement of Ms. DeLauro follows:]
Mr. Pallone. Thank you, and thank you for your passion,
really.
We only have about a minute left. I was going to suggest we
come back, if that is okay. All right. We will reconvene after
those votes with Congresswoman Wasserman Schultz. The Committee
is in recess.
[Recess.]
Mr. Pallone. The Subcommittee will reconvene, and we had
our Members' panel, and you ended up last, I guess. I apologize
for that, Congresswoman Wasserman Schultz. But let me say,
since we have a little time, thank you so much. You are like a
hero. You really are. Or heroine, I guess, is the word. I mean,
I don't know all the details but I remember the speech when you
came to the Floor that one day and it was just amazing. All
that you do, I don't know how you find the time, but thank you.
STATEMENT OF DEBBIE WASSERMAN SCHULTZ
Ms. Wasserman Schultz. Thank you so much, Mr. Chairman. I
am happy to bat cleanup today for the Member panel, and
Chairman Pallone and Ranking Member Deal when he comes back and
the distinguished members of the Subcommittee that are here
with us, it really is an honor to be here and to testify in
front of the Health Subcommittee of Energy and Commerce, and
Mr. Chairman, thank you very much for holding this hearing
during Breast Cancer Awareness Month. I think that is a
particularly important symbol. It is fitting that we review
what is needed in the fight against breast cancer during this
special month when, although we pay special attention to breast
cancer awareness during the month of October, it is important
that we focus on that awareness and help women pay attention to
their breast health throughout the year.
Before I go further, I really want to give my deepest
gratitude and thanks to the efforts of three of my colleagues,
Sue Myrick, Rosa DeLauro and Donna Christensen, who embraced
this legislation months ago before I publicly shared my own
battle with breast cancer, and it was an honor to testify by
the side of my friend and colleague, Rosa DeLauro, and Sue, you
are just superhuman. I think there was one day when you got 45
cosponsors for this bill in one small series of votes. It is
hard for me to express how much I appreciate your support for
me and the fact that I was able to share my story and talk to
you about our mutual experience before I shared it with
everyone else. Thank you very, very much. You have been there
for me every step of the way.
Breast cancer strikes women from all backgrounds, all
races, all ages and all ethnicities. It strikes black and
white, rich and poor, those with access to quality health care
and those without. But many women, too many women do not know
their specific risk factors or their family history, and this
is especially true with young women who see breast cancer as an
older woman's disease. Many young women think breast cancer
will never happen before they turn 40 but we know that young
women can and do get breast cancer. In fact, each year nearly
24,000 women under 45 are diagnosed with breast cancer in the
United States. While incidence rates of breast cancer are much
lower in young women than older women, young women's breast
cancers are generally more aggressive, they are diagnosed at a
later stage and they result in higher mortality rates. After
talking with many health care professionals, advocates in the
breast cancer community and the Centers for Disease Control and
Prevention, it became clear that there was an urgent need to
help build awareness among this often overlooked group. These
conversations led to H.R. 1740, the Breast Health Education and
Awareness Requires Learning Young Act, or the EARLY Act. This
bill will empower young women to learn the facts, know their
bodies, speak up for their health and embrace support. The
truth is, we all need to be better informed about our own
health. We must empower each other to know and reduce our
risks.
Recently I learned I had more personal risks than I was
aware of. Almost 2 years ago, as most of you know now, only 6
weeks after a clean mammogram, I found a lump in my breast
while doing a routine self-exam. My doctor diagnosed me with
breast cancer when I was only 41. As a legislator, I have been
in the fight against breast cancer for a long time. In Florida,
I was the lead sponsor of the drive-through mastectomy law, the
focus of Rosa's bill. I never dreamed I would need its
protection myself. I thought I knew all of my risk factors.
That is why I chose to perform self-exams and saw my doctor
regularly. But after I was diagnosed, I learned I had more risk
factors than I was aware of. I had no idea, for example, that
as an Ashkenazi Jewish woman, I was five times more likely than
the general population to have a BRCA1 or BRCA2 gene mutation.
I didn't know that that mutation gave me as much as an 85
percent chance of developing breast cancer during my lifetime.
Too many young women are unaware of their risk.
The EARLY Act will give all young women the tools and
information they need to take more control of their health. It
will raise awareness of their personal risks and the importance
of paying attention to their breast health. It will encourage
young women to be familiar with the look and feel of their
breasts. By knowing what feels normal, a young woman has a
better chance of knowing when something feels different, and I
can tell you that that is how it was for me. Because I did
self-exams on a fairly regular basis, I was familiar enough
with what my breasts normally felt like so that when I felt
that lump, I knew it didn't belong there. The EARLY Act will
teach young women and medical professionals about the
importance of family history, warning signs of breast cancer
and predictive tools such as genetic testing that can help some
high-risk women make informed decisions about their health. It
will also provide grants to organizations dedicated to
supporting young women diagnosed with breast cancer. These
grants will help young women tackle the unique challenges that
they face like fertility preservation, body image and self-
esteem as well as help them manage and understand their risks.
And again, when a young woman is diagnosed with breast cancer,
I mean, at 28 years old, for example, if they don't even have a
boyfriend and they are faced with breast cancer and having a
double mastectomy and dealing with chemotherapy and facing
their own mortality, on top of that having to think about how
to preserve their fertility, that is a unique challenge that
young women who are diagnosed with breast cancer face that
older women simply do not, and younger women have to face many
more years as survivors which presents in and of itself unique
challenges.
So we have 371 cosponsors in the House including nearly all
members of this Subcommittee and 34 cosponsors in the Senate.
The EARLY Act has garnered broad public support from more than
40 advocacy and health organizations, many of whose
representatives are behind me here today, and I just cannot
thank these groups enough for their support, for their
expertise and their guidance in helping to craft this
legislation, but also for their personal support of me because
it has just been very moving and special for me.
Some say that we shouldn't be talking to young women about
breast cancer at all because it might scare them. Well, I find
this quite simply patronizing. Young women and providers can
handle the truth. They can and should be empowered with the
knowledge that while only 15 percent of breast cancer cases are
in women under 45, eight of these women die every here in
America. Having no information when you are 35 about breast
cancer and finding a lump in your breast, that is what is
really scary.
Over the past year I have met with oncologists and other
health care professionals that work with breast cancer
patients, whether at MD Anderson Cancer Center in Houston, the
Dana Farber Cancer Institute at Harvard or the Cancer Center at
Memorial Regional Hospital in my district in Florida, the
message is clear: too often a diagnosis of breast cancer is
delayed or missed in young women. A Harvard study of young
women with breast cancer found 26 percent delayed seeking
medical attention and 27 percent experienced a delay in
diagnosis after seeking medical attention. This means that more
than half of young women are not receiving the timely treatment
that they need. We must do better. By encouraging young women
to know their bodies and their family history and by teaching
young women how to effectively talk with their doctors and
their doctors with them, we can transform how we approach the
fight against breast cancer.
Every young woman that I know has the goal of becoming an
old woman. With the passage of the EARLY Act, we can help more
young women in America reach their goal and give them powerful
tools to take control of their own health for a lifetime. Thank
you very much.
[The prepared statement of Ms. Wasserman Schultz follows:]
Mr. Pallone. Thank you so much. Really, you know, even now
you have given me a lot more insight into what needs to be done
and what we need to do, and I just want to stress again, I know
that there has been some discussion today about what is in the
health care reform bill and how some of these bills relate and
some parts of them actually are included, but as I said
earlier, this is a legislation hearing and so we do intend to
move the bills, and we will look and see what is in the health
reform and what isn't and take that all into account.
Ms. Wasserman Schultz. Mr. Chairman, I have been a
legislator for a long time. Any which way this bill becomes law
is fine with me. Thank you very much, and thank you to the
Committee staff because they have been an incredible source of
support and guidance as we move through the process too. Thank
you.
Mr. Pallone. Take care.
Now, what we are going to do with our second and third
panel is that the panelists have agreed, actually on their own
initiative, to put the two panels together, so we are just
going to have one panel. This way we can save time and have a
series of questions that way. So I would ask the second and
third panel members to come forward, if you would. Welcome. Let
me say that the normal practice is that Administration
witnesses have a separate panel, which is why Dr. Taplin from
NIH would normally have had the second panel, so I want to
thank you for suggesting that you be with the other panel, but
I don't want anyone to think that that prejudices what we do in
the future. We understand that the Administration is normally
not part of another panel.
So let me introduce everyone. Starting on my left is Dr.
Stephen Taplin, who is chief of the Applied Cancer Screening
Research Branch, Division of Cancer Control and Population
Science for the National Cancer Institute, which is part of the
National Institutes of Health. Then we have Dr. Otis Webb
Brawley, who is chief medical officer for the American Cancer
Society; Ms. Jenny Luray, who is president of the Susan G.
Komen for the Cure Advocacy Alliance; Debra L. Ness, who is
president of the National Partnership for Women and Families;
Dr. George W. Sledge, Jr., who is Ballve Professor of Oncology
at Indiana University Medical Center in the Cancer Pavilion;
Ms. Fran Visco, who is president of the National Breast Cancer
Coalition, and finally, Dr. Marisa C. Weis, who is president
and founder of Breastcancer.org. So thank you all for being
here, and I think you know we have 5-minute opening statements
that become part of the record. I would like you to try to keep
your comments to the 5 minutes if you could. You may get
questions from the panel that you have to get back to later in
writing too, but we would like you to try to answer the
questions today.
So we will start with Dr. Taplin from NIH. Thank you.
STATEMENTS OF STEPHEN TAPLIN, M.D., M.P.H., CHIEF OF THE
APPLIED CANCER SCREENING RESEARCH BRANCH, DIVISION OF CANCER
CONTROL AND POPULATION SCIENCE, NATIONAL CANCER INSTITUTE,
NATIONAL INSTITUTES OF HEALTH; OTIS WEBB BRAWLEY, M.D., CHIEF
MEDICAL OFFICER, AMERICAN CANCER SOCIETY; JENNIFER LURAY,
PRESIDENT, SUSAN G. KOMEN FOR THE CURE ADVOCACY ALLIANCE; DEBRA
L. NESS, PRESIDENT, NATIONAL PARTNERSHIP FOR WOMEN AND
FAMILIES; GEORGE W. SLEDGE, JR., M.D., BALLVE PROFESSOR OF
ONCOLOGY, INDIANA UNIVERSITY MEDICAL CENTER, CANCER PAVILION;
FRAN VISCO, J.D., PRESIDENT, NATIONAL BREAST CANCER COALITION;
AND MARISA C. WEISS, M.D., PRESIDENT AND FOUNDER,
BREASTCANCER.ORG
STATEMENT OF STEPHEN TAPLIN
Dr. Taplin. Thank you, Mr. Chairman Pallone, and Committee
members. Thank you for the opportunity to speak today. I have
also provided a written document that elaborates on my
testimony with greater detail. As you have heard, I am Dr.
Stephen Taplin, the chief of the Applied Cancer Research Branch
at the National Cancer Institute. Before coming to NCI, I spent
20 years as a practicing family physician while also managing
an organized breast cancer screening program and conducting
screening research at Group Health Cooperative, an integrated
health plan in Seattle, Washington.
There is more than 50 years of research in breast cancer
screening and treatment that is now having a positive impact on
the lives of women. Research shows that the breast cancer
incidence increases markedly. Each year among 100,000 women,
1.4 cancers are diagnosed in the age group 20 to 24, but as you
can see here in figure 1, the rate rises to a peak of 454 in
women ages 75 to 79. The benefit of research for these women is
that breast cancer death has fallen across all age groups since
1975. Since 1990, the rate of decline has accelerated and the
annual percent reduction in mortality has been a fairly
consistent 2 to 3 percent per year over the last 10 years.
However, let me be clear that I understand it is not the
research that changed the lives, it is the choices women are
making and the changes in therapy that physicians that are
implementing that have had the impact. The key is those changes
are guided by evidence from research.
The mortality reduction we are seeing is due to both
improvements in treatment and improvements in screening. An
elegant set of modeling studies demonstrated approximately half
the reduction in mortality among women ages greater than 40 is
due to screening, that in fact screening has become a large
part of health in the United States since evidence from
randomized trials showed that mortality reductions were
possible. However, the integration of screening into care has
not been simple because the evidence was sometimes ambiguous.
The results from breast cancer screening trials show less
benefit for women ages 40 to 49. Furthermore, the benefit
appears much later in the lives of these women. Ultimately,
however, the results of randomized trials led to national
recommendations and increases in breast cancer screening among
average-risk women in the United States beginning at age 40.
The U.S. Preventative Services Taskforce, as you have heard,
suggests considering screening every 1 to 2 years starting at
age 40. Screening rates are at about 66 percent within the last
2 years in the United States today.
It is clear that not everyone is at average risk. As our
knowledge of the genetic determinates of cancer has grown,
there has been increased concerning regarding the high-risk
populations. The ACS has provided recommendations that women at
greater than 25 percent lifetime risk for breast cancer should
consider magnetic resonance imaging. This is about 1 to 2
percent of women. These recommendations are based on
observational studies showing that technology has a higher
sensitivity in dense breast tissue. Unfortunately, it also
shows more false positive tests than occur with mammography. We
need national work to show that use of MRI in high-risk women
actually affects mortality. NCI is sponsoring studies on how to
reduce the false-positive testing with MRI but it continues to
be a limitation. One approach around the problem is to examine
biomarkers and biomarker profiles that may identify the lethal
cancers or become a screening test.
Access across most races and ethnicities including whites,
women in lower socioeconomic groups are less likely to be
screened, in large part because they do not have access to
preventive care. People with less than 12 years of education
are one of the groups in the United States who have not seen a
significant drop in breast cancer mortality. The Centers for
Disease Control and Prevention has managed a program to
encourage access to screening among low-income populations.
That is a step towards addressing access. Access to medical
care is critical to screening because it is a process, not a
test. The screening process has multiple steps as shown in
figure 2, and these steps are managed in clinical trials but
not necessarily in usual practice in the United States.
To achieve the full potential of screening in the United
States, we must consider how to improve the entire process. We
must also consider the effects of the process on all the women,
even those who will not get cancer. Some have argued that
healthy people should be very skeptical of screening because
most people will not have cancer even with a positive test.
Improving the screening process means finding better tests and
better diagnostic procedures. NCI is supporting research in key
areas relevant to optimizing the screening process for breast
cancer including risk estimation using biomarkers as a genetic
profile, comparative effectiveness studies to evaluate MRI, 3D
ultrasound and emerging technologies and the comparison of
alternative screening and diagnostic strategies.
In closing, I want to emphasize three points, that fewer
women have died of breast cancer because research has led to
progress in breast cancer screening and treatment, that the
research provides evidence for women and their physicians to
choose wisely among options they face but it is their behavior
that changes care and improves outcomes, and three, that we
have much more research to do to understand the screening
process, how to affect behavior, to identify biomarkers of
risk, cancer progression and treatment response and to use all
of this information to begin to personalize screening.
Thank you for the opportunity to testify.
[The prepared statement of Dr. Taplin follows:]
Mr. Pallone. Thank you, Dr. Taplin.
Dr. Brawley. I see your nametag says ``Brawler'' but it is
Brawley, right? It is Brawley.
Dr. Brawley. It is correct on this.
Mr. Pallone. Thank you.
STATEMENT OF OTIS WEBB BRAWLEY
Dr. Brawley. Thank you, Mr. Chairman, and good afternoon,
distinguished members of the Committee. I am Dr. Otis Brawley,
the chief medical officer of the American Cancer Society. I am
a medical oncologist by training and a practicing physician,
and I am professor of hematology, medical oncology, medicine
and epidemiology at Emory University. On behalf of the 11
million cancer patients and survivors in America today, the
American Cancer Society thanks you for your continued
leadership in the fight against cancer and commitment to
enacting comprehensive health care reform this year.
I greatly appreciate the opportunity to testify today on
federal initiatives to help fight breast cancer in the United
States. Dr. Taplin's comments were quite wise, by the way.
Breast cancer is an amazingly devastating disease. It is also a
very complicated disease. Too often we do a disservice to women
who we want to help by simplifying the concepts of this disease
with very simple messages. Sometimes simple messages actually
end up doing harm. This year, breast cancer will take the lives
of approximately 40,000 women in the United States. This is
particularly disheartening because we know that if every woman
had access to accurate information about the disease, good
science-driven early detection and quality and timely
treatment, more of them would survive this disease.
Members of the Committee today quoted a lot of American
Cancer Society-generated statistics. One statistic generated by
the same ACS epidemiologist that I would like to quote is the
fact that with halfhearted approaches to breast cancer from
1991 to 2005, 55,000 to 60,000 women's lives or deaths were
averted. We averted 55,000 to 60,000 breast cancer deaths by
really in essence halfheartedly approaching this disease and
not getting serious about it. At a time when at least a third
and indeed in the 1990s perhaps 50 percent of women who should
have been getting screened were not getting screened, and even
today a substantial number of women who were screened and found
with an abnormality get less than good treatment for the
disease. Unfortunately, not all women have access to adequate
health coverage with the public health programs that have been
proven to help save lives. The consequences can be devastating
in terms of prognosis.
My testimony today will highlight four priority areas that
are essential to improved breast cancer outcomes in the United
States. Priority one: You must ensure access to quality health
care for all Americans. Our current health care system fails to
meet the needs of far too many people. Research has made clear
that lack of health insurance can be deadly. Studies have
documented that uninsured breast cancer patients are more
likely to be diagnosed at a later stage of disease and have
lower survival rates than women who are privately insured. That
is a polite way of saying the uninsured are more likely to die.
Continued progress against breast cancer requires that we give
all cancer patients an equal opportunity to battle this disease
by making sure they have access to quality and timely medical
care.
Priority two: We need to ensure that we apply what we know
about evidence-based prevention and early detection and make
these services available to all Americans. Breast cancer is one
of the few cancers early through evidence-based screening
tests. Absent these screenings, women are at risk of being
diagnosed at later stages of the disease when it has spread and
become more difficult and more expensive to treat and chances
of survival drop precipitously. Now is the time to transform
our current sick care system into one that also focuses on
prevention and wellness. This requires making evidence-based
and early detection services affordable and accessible to all
populations. Ironically, not doing so increases our Nation's
overall health care costs.
Priority three: Clinical decisions must be patient-centered
and made through strict rational and orthodox interpretation of
the most current scientific evidence. This is particularly
important in the context of a serious illness like breast
cancer or any cancer. As practitioners, we need to strive to
consistently do a better job of explaining the evidence and the
options for screening treatment and care as understandably as
possible to help patients make informed decisions together with
their health care teams.
Priority four: Finally, we must do a better job of
addressing the health disparities that exist in our Nation.
Recent studies have shown differences in quality of care
provided among certain populations that are of particular
concern. For example, Congresswoman Castor actually quoted a
study that I published together with colleagues last year that
showed that black women were five times more likely to
experience huge delays in starting breast cancer treatment
compared to white women. We also found that black women were
significantly less likely to receive appropriate surgery. Seven
and a half percent of black women and 1\1/2\ percent of white
women with a locally staged potentially curable breast cancer
did not get breast surgery, research completed by Halstead in
1903 that was not practiced in the year 2006. It is well
documented that insurance status and poverty are principal
determinates in cancer disparities. We simply must do a better
job in providing access to appropriate early diagnosis and
cancer treatment services for all women.
In closing, it is gratifying that since 1990 we have been
seeing a rise in the number of women surviving breast cancer
each year, and as I said, 55,000 to 60,000 deaths averted. But
that success is not enough. All women must have access to
accurate information, existing and future early detection
methods and quality treatment and care. The number of deaths
averted if all women who should have gotten screening and
should have gotten accurate diagnosis and should have gotten
accurate treatment, the number of deaths averted would have
easily doubled over that 55,000 to 60,000.
The Society appreciates the leadership and commitment of
the Energy and Commerce Committee in helping eliminate
suffering from breast cancer through the work that will be
described today and through health care reform. My colleagues
at the American Cancer Society Cancer Action Network, ACS CAN,
and I look forward to working with you as we look ahead to help
create a world with less cancer.
Thank you again for inviting me here today. I would be
happy to answer your questions, sir.
[The prepared statement of Dr. Brawley follows:]
Mr. Pallone. Thank you, Dr. Brawley.
Ms. Luray.
STATEMENT OF JENNIFER LURAY
Ms. Luray. Mr. Chairman and members of the Committee, thank
you for the opportunity to testify today about the four breast
cancer bills before your Committee. My name is Jennifer Luray
and I am president of the Susan G. Komen for the Cure Advocacy
Alliance and vice president of Government Affairs and Public
Policy for Susan G. Komen for the Cure.
This year marks the 25th anniversary of National Breast
Cancer Awareness Month. It is an opportunity to reflect on what
we have accomplished and to work even harder to fight the war
on breast cancer. Before the Nation celebrated breast cancer
awareness, we practiced denial. We didn't talk about breast
cancer, didn't understand it, did little to find out how to
prevent and treat it. This was the world that Susan Komen lived
in when she heard those dreaded words at age 33: ``You have
breast cancer.'' Her sister, Nancy Brinker, founded Susan G.
Komen for the Cure, and a promise made between two sisters to
end breast cancer forever has become the promise of millions.
Thanks to events like the Race for the Cure, we have invested
almost $1.5 billion in cutting-edge research and community
programs and have pledged another $2 billion over the next
decade. The Komen Advocacy Alliance, the sister organization
that I am proud to lead, mobilizes a network of 250,000
advocates, men and women, at the State and national level to
promote important policy change. Our promise is to leave few
scientific opportunities or community needs untouched.
Yet, to make the most of these investments, we need to
first empower women to be advocates for their own health,
second, to expand access to health care, and third, to improve
the quality of care that women receive, and we need the help of
Congress to do that. That is why I am so pleased to be here
today, because of these bills before the Committee helps us to
move closer to these goals.
I will first discuss the Breast Cancer EARLY Act, H.R.
1740. The Komen motto is that information empowers women to be
their own best advocates yet too many don't receive information
about breast cancer until their doctor recommends their first
mammogram at age 40, and that is just too late for information.
Each year, 25,000 women in this country under age 45 are
diagnosed with breast cancer, and sadly, almost 3,000 under age
45 will die. That is approximately 10 percent of all breast
cancer diagnoses this year, certainly not a trivial number. A
carefully targeted, evidence-based public health effort will
inform young women and importantly their providers that
unfortunately breast cancer does occur in young women. It will
help women to establish good lifelong breast health habits like
regular exercise and to be empowered to seek care when they
suspect that something is wrong. It will also prevent fewer
young women with breast cancer from being overlooked by the
medical system and left undiagnosed until their disease is
tragically advanced. We have had an outpouring of support from
young women around the country for this bill. We are working
with the bill's sponsor to ensure that funding for the EARLY
Act won't come from existing funds for the CDC's breast and
cervical cancer program.
Let us now turn to the Breast Cancer Patient Protection
Act, H.R. 1691. To be truly empowered, women also need to the
ability to impact decisions. That is why the Komen Advocacy
Alliance has consistently supported this bill by
Representatives DeLauro and Barton. Decisions concerning a
women's care after a complicated medical procedure should be
made between the woman and her doctor and not dictated by an
insurance company.
H.R. 995, the Mammogram and MRI Availability Act,
introduced by Representative Nadler, brings us closer to the
second goal I mentioned, which is expanding access to health
care. At Komen, we believe that all women should have access to
recommended screenings including cancer survivors who need
follow-up testing and surveillance. Guidelines recommended by
the American Cancer Society and the National Comprehensive
Cancer Network state that women at high risk should receive
annual screening mammograms and an MRI every year. Importantly,
women undergoing screening tests should do so in conjunction
with their doctor. When we talk about improving access to care,
we mean quality care for all women, our third goal. So we
commend Congresswoman Castor and Congresswoman Christensen for
their attention to the issue of disparities in breast cancer.
Low-income women should have access to the same quality care as
higher-income women so that they can benefit from the same
positive outcomes. Improving the quality of cancer care across
income, race and ethnicity has long been a focus of Komen. We
recently joined with the American Society of Clinical
Oncologists to collect data that can be used for quality
improvement. This type of data collection is needed for any
performance or quality-based payment system.
In addition to these bills specific to breast cancer, we
want to thank Congresswoman Capps for her leadership on two
comprehensive cancer bills, one to revamp research and the
other to improve care. The Komen Advocacy Alliance also
strongly supports the insurance reforms in H.R. 3200 that would
prevent patients from being denied coverage due to preexisting
conditions, protect patients from high out-of-pocket costs and
dramatically improve access to mammograms. Before Congress
reconvened this fall, we asked our advocates to share their
personal experiences. Nearly 60,000 women and men from around
the country contacted their representatives. Their heart-
wrenching stories call out the need for health care reform.
Breast cancer patients turned down for insurance turn destitute
after paying for their care and turn sicker because they
couldn't afford screening or treatment.
In conclusion, I want to thank you again for the
opportunity to testify before your Committee. As we mark the
25th anniversary of National Breast Cancer Awareness Month, we
take a hard look at what we have accomplished and where we need
to be. The stigma surrounding breast cancer in our country is
largely gone, a fact that makes us the envy of women the world
over. In the United States, more women are being screened and
living longer as a result, and we have made progress on key
scientific fronts. Yet, if we are one day to end the suffering
and death from breast cancer, we must continue to make
investments across the entire cancer spectrum to prevent and
better detect and treat the disease, and we must always trust
the women to be our partners in this fight. Information
empowers women to be their best advocates.
We look forward to working with you and our partners in the
cancer community as we continue this important race forward.
Thank you, Mr. Chairman.
[The prepared statement of Ms. Luray follows:]
Mr. Pallone. Thank you.
Ms. Ness.
STATEMENT OF DEBRA L. NESS
Ms. Ness. Good afternoon, Chairman Pallone, members of the
Subcommittee. Thank you for this opportunity to testify.
The National Partnership for Women and Families is a
nonprofit, nonpartisan organization with more than three and a
half decades of experience working on issues important to women
and families. Over the years we have brought together a wide
range of consumer voices to push for health reform that would
expand affordable coverage, help us get costs under control,
improve quality and reduce disparities. We are very pleased to
support the efforts of this Subcommittee to enact comprehensive
health reform this year. This is truly a historic moment. For
the first time in decades, Congress is poised to enact
comprehensive reform that would vastly improve the lives and
well-being of America's women and families.
We are pleased to endorse H.R. 3200 for many reasons. It
provides meaningful financial assistance to help low- and
moderate-income families purchase insurance. It ensures
adequate coverage and scope of benefits. It creates a health
insurance exchange with strong patient protections. It prevents
insurers from denying or dropping people from coverage because
of their health status or raising rates based on gender. Very
importantly, it charts a pathway for real delivery system
reform. This pathway is key to ensuring that the reforms we
enact today are meaningful and sustainable for the long haul. I
believe H.R. 3200 lays the groundwork for a system that over
time will deliver better care to patients and enable us to get
more value for our health care dollars. It does this by shoring
up primary care and encouraging better coordination through new
payment models and it creates the necessary foundation for
those models through things like comparative effectiveness
research, workforce development, better data collection and
quality measures and improvements.
It is the development and use of quality measures that I
want to particularly focus on today, not just for breast cancer
care but for our system as whole. The use of measures to
generate performance information about provider performance is
critical to getting us to a system that at some point delivers
on the promise of the right care to the right patients at the
right time for the right reasons. Without measurements, we
can't know if the new models we are putting in place are
actually resulting in better patient care. We can't assess
whether we are really eliminating disparities. Without
measurement, we can't tell if we are using our health care
dollars effectively. We can't transition to a system that is
based on value rather than volume. Without good measures and
good measurement and the quality improvement that they enable,
we simply cannot achieve the high-quality, effective and
equitable care that patients need and deserve.
Congresswoman Castor, you have clearly recognized the
importance of measurement in your bill, H.R. 2279, and we
applaud your commitment and leadership on women's health
issues. We share your goals of rewarding value over volume, of
incentivizing quality, of improving the patient's experience of
care and eliminating disparities, and we particularly
appreciate the provisions of your bill that move us toward
quality measurement and public reporting at the individual
provider level and that help us begin to align our payment
system so that we have incentives that encourage better quality
and practice that lives up to the best standards of care. These
elements are essential to building a more effective delivery
system and they should be integral not just to care for breast
cancer but to the broader reforms that we all seek. We stand
ready to work with you and your colleagues to implement a
pathway for these reforms but we also urge that we do this in a
way that benefits all patients no matter what their condition
or diagnosis and in ways that are going to generate
accountability for all providers across all settings. It is
this vision that led the national partnership to work with the
Stand For Quality Coalition, which is a broad group of about
200 health care stakeholders that include consumers, purchasers
and providers to issue a set of recommendations that are now
largely embodied in H.R. 3200. These recommendations call for a
national comprehensive strategy that includes setting
priorities for quality improvement and measurement, developing
good measures and then endorsing and maintaining those measures
as national standards, collecting and analyzing measurement
data and then using that data for quality improvement, for
public reporting and for payment. This broad coalition of
stakeholders also called for a multi-stakeholder consultative
process to provide input and make recommendations so that the
implementation of this strategy would engage in reflective
perspectives of all of us who have a stake in health care.
So in closing, I want to say how pleased we are that H.R.
3200 has incorporated these recommendations and I thank the
members of this Subcommittee for their leadership in
recognizing that a comprehensive quality strategy is the
critical foundation for health reform that is meaningful,
equitable and sustainable over the long term. Thank you.
[The prepared statement of Ms. Ness follows:]
Mr. Pallone. Thank you.
Dr. Sledge.
STATEMENT OF GEORGE W. SLEDGE, JR.
Dr. Sledge. Mr. Chairman Pallone, members of the
Subcommittee, thank you for the opportunity to submit testimony
today. My name is Dr. George Sledge. I am a medical oncologist
from Indianapolis who specializes in the treatment of breast
cancer. I also serve as professor of medicine at Indiana
University's Simon Cancer Center, and I am president-elect of
the American Society of Clinical Oncology. ASCO's mission is to
ensure that the highest quality, evidence-based care is
delivered to all people with cancer during all stages of their
disease. We are especially pleased to speak at today's hearing
as it focuses on the cornerstones of ASCO's mission: cancer
prevention, quality, access to care and education.
Many of us have been touched by breast cancer either
personally or through family members' or friends' experiences.
ASCO supports the underlying goals of all four bills being
discussed today and we urge this Committee to ensure the
resulting legislation is grounded in sound scientific evidence.
In today's testimony, I will focus on three areas that span the
continuum of cancer care: patient access to appropriate
screening, patient education and public awareness, and quality
measurement in cancer care.
The first is patient access to appropriate screening.
Studies have shown the value of cancer screening, particularly
mammography in women over the age of 40. ASCO supports
provisions that prohibit health plans from establishing
policies or barriers to medically appropriate testing. While
MRI is a highly sensitive test, we should not overlook the
potential risk of overdiagnosis that lead to additional
diagnostic tests including biopsy. Tests and procedures cause
anxiety and can lead to harms so we should be very clear about
the associated costs, risks and benefits. The greatest utility
for MRI appears to be for women who are at high risk for breast
cancer such as individuals who have a strong family history.
For women at high risk, detection of abnormalities is less
likely to result in false positive findings. However, all women
undergoing screening MRI should be informed about the odds of
false positive findings and the potential adverse consequences
of those findings.
The second issue I will discuss is patient education and
public awareness. With respect to educating young women on the
causes and risks of breast cancer, such an endeavor must be
evidence based. An informed patient has a critical advantage in
cancer care treatment and the American Society of Clinical
Oncology has directed considerable resources and expertise to
informing patients through our cancer.net website.
Finally, I would like to address quality measurement and
reporting, which is at the very core of ASCO's mission. More
than 500 oncology practices throughout the country participate
in ASCO's Quality Oncology Practice Initiative, or QOPI, a
system for practicing oncologists to submit clinical data where
practice-specific comparative data reports are generated. QOPI
allows oncologists to systematically assess the quality of care
they provide and engage in data-driven practice improvement
activities. The majority of the 80 quality measurements in QOPI
are applicable to breast cancer patients and 14 are specific to
breast cancer treatment. QOPI together with the breast cancer
registry pilot made possible by generous support from the Susan
G. Komen For the Cure will provide tremendous insight into how
breast cancer patients receive care, where improvements are
needed and strategies for breast cancer care. A project that
tests well-designed quality measures in breast cancer would
move the field forward. However, such a project must remain
flexible, especially with respect to public reporting of
quality information. Studies of quality performance suggest
that the most important element is the very active measuring
and sharing outcomes with physicians. Value-based purchasing
that reduces payment for low-quality providers rather than
rewarding high-quality providers may have the unintended
consequence of further stressing systems that are already
struggling. The development and testing of quality measures
would benefit from ASCO's long history of work in this area.
Some measures developed by ASCO have already been endorsed by
the National Quality Forum but the number of NQF-endorsed
measures for cancer is quite limited. Significant work will be
required to expand this portfolio so that it includes the full
range of measures required in H.R. 2279. ASCO would be
delighted to provide its expertise in this area.
In closing, ASCO appreciates the tremendous thought and
attention the Subcommittee and sponsors of the four bills have
devoted to the care of women with breast cancer. We look
forward to working with you and our partners throughout the
cancer community to achieve the important goals set out in
these bills. Thank you very much.
[The prepared statement of Dr. Sledge follows:]
Mr. Pallone. Thank you, Dr. Sledge.
Ms. Visco.
STATEMENT OF FRAN VISCO
Ms. Visco. Thank you. Thank you, Chairman Pallone, members
of the Subcommittee. I appreciate very much the opportunity to
testify today on behalf of the National Breast Cancer
Coalition.
I am a 22-year breast cancer survivor. I was diagnosed when
I was 39 years old. My son, David, was 14 months old. I was a
partner in a law firm in Philadelphia and I was fortunate that
I became involved with a group of women who launched the
National Breast Cancer Coalition and I soon left my law
practice to devote my life to our mission to eradiate breast
cancer.
We are a coalition of organizations from across the
country. Our board of directors is a board of 25 of these
organizations representing the diversity that is breast cancer
from the Women of Color Support Group, to Nueva Vida, to the
Alamo Breast Cancer Coalition, to the California Alliance of
Breast Cancer Organizations. Our national grassroots network
consists of representatives of many different organizations. We
set priorities. We educate our members to understand the
language and the concepts of science. We know that women are
quite capable of understanding these issues, of accepting the
truth no matter how difficult that may be, and of speaking up
for themselves. We critically analyze information. We
critically analyze public policies before we set our priorities
and before we take positions, and we have but one agenda and
that is to eradicate breast cancer.
I know the Committee today is focusing on a number of bills
specific to breast cancer and we have submitted analyzes of
some of those bills to members, and I will submit them for the
record. But what I want to focus my remarks on today is our
number one priority, and that is the bill that we believe will
have the largest impact for all women at risk of and all women
who have received a diagnosis of breast cancer and that is
guaranteed access to quality health care for all. We followed
our process of research of critical analysis. We spent several
years educating our grass roots, looking at various health care
systems, reading the literature, researching the system, and we
developed our framework which was submitted with our written
testimony to support guaranteed access for all, educated
patient participation at all levels of the system, shared
responsibility and benefits based on evidence. We strongly
support comparative effectiveness research because we believe
that it is necessary to help ensure quality and affordable
health care for all. We need a high level of evidence for
doctors and patients to choose which care is appropriate, for
whom and under what circumstances. In addition, our framework
calls for a significant number, and that is 25 percent of
educated patient and consumer member on all committees,
commissions and boards involved in health care including those
established to review and assess the best evidence-based
treatment options.
We commend the Committee for its work on H.R. 3200, which
achieves many of the benchmarks set forth in our framework, and
we are pleased to endorse that bill and we look forward to
working with you to ensure that all individuals have access to
the comprehensive quality care they deserve, quality care they
need. Everyone should have access and it must be affordable,
not just for the federal budget but to people. It must be
affordable to individuals. We very much appreciate your
interest and support of our shared goal to save lives and to
end breast cancer. You have the power to make a real difference
for all of us, and we know how complicated these issues are,
how difficult your task is. We know how complex breast cancer
is and how careful we all have to be to make certain that what
we are doing is the right thing in terms of women's lives.
There are too many unfortunate examples of policy messaging
and beliefs that have taken hold when there was in fact no real
evidence behind it, and these actions resulted in harm to
women. My written testimony describes them from bone marrow
transplants to breast self-exams and hormone replacement
therapy to the misuse of statistics by opponents to health care
reform that are looking inappropriately at survival statistics
that are outdated from different countries. All of that has
been submitted with my written testimony.
I know firsthand the horror of breast cancer and I see that
horror over and over again for too many women of all ages, all
races, all walks of life. That is why we are so firmly
committed to the evidence-based approaches, to our passionate
commitment to eradicating breast cancer.
I want to take a moment to talk about Carolina Hinestrosa,
a strong, passionate, unbelievable activist. She was the
executive vice president of the National Breast Cancer
Coalition. She founded Nueva Vida, a national support group for
Hispanic women with breast cancer. She was diagnosed 15 years
ago at the age of 35 and then again 6 years ago. She died in
June of a soft-tissue sarcoma, a result of her treatment for
breast cancer, not breast cancer, her treatment for breast
cancer, just one more story of how complex this disease is, how
complicated the issues are. I dedicate my testimony and my work
to her memory, and I thank you again.
[The prepared statement of Ms. Visco follows:]
Mr. Pallone. Thank you, Ms. Visco.
Dr. Weiss.
STATEMENT OF MARISA C. WEISS
Dr. Weiss. Thank you, Chairman Pallone, Subcommittee
members and other panelists. It is a true privilege for me to
be here today to talk about breast health and breast cancer
issues that have been my core professional focus and driving
mission for over 20 years, but more importantly, these issues
directly affect about half the United States population and the
rest of us who care for them.
My name is Dr. Marisa Weiss. I am a breast oncologist and
founder and president of the nonprofit Breastcancer.org. We are
the world's most utilized online resource for breast health and
breast cancer information, reaching 8 million people annually.
As a doctor, I have had the honor taking care of thousands of
women with breast cancer and have seen up close its devastating
effects, and our laws govern how I can best care for the unique
needs of each individual that comes to me.
Everyone here knows how much is at stake. The breasts are
the favorite place for cancer to occur in women, often in their
prime of their lives and when these women are most
indispensable to so many. The bills before the Committee today
represent critical ongoing efforts to improve diagnosis and
patient care. I would like to start with the EARLY Act. I
believe this legislation will do much to advance public health
efforts and combat the threat of breast cancer, and I commend
Congresswoman Wasserman Schultz for her leadership. There are
concerns that outreach to young women will produce more harm
than good by creating the fear of breast cancer, but what we
have found is that fear already widely exists. Information
about breast cancer is pervasive. Young women like the rest of
us are bombarded by breast cancer messaging aimed at adult
women. To better understand the impact, Breastcancer.org
conducted a research project with 3,000 girls ages 8 to 18
across the country. Consistently, nearly 30 percent of girls
feared that they may have had breast cancer. It was triggered
by breast pain, a diagnosis in someone close to them, or
mistaking the changes of normal breast development for signs of
breast cancer. Over 70 percent of girls have someone close to
them who has been diagnosed, a mother, grandmother, best
friend's mom, teacher or neighbor, and when breast cancer
diagnosis strikes this close to home, their fears were
magnified. Many young women think breast cancer messages in the
media targeted to mature women directly apply to them as well,
but they simply don't have the resources to understand the
meaning and relevance of these critical issues nor do they have
the dialog skills or opportunities to discuss their fears or
clarify breast cancer misinformation. Only 47 percent of the
girls had talked to a parent, 40 percent to a doctor.
To resolve unrealistic fears, young women in this era need
accurate information and reassurance that age-appropriate and
scientifically grounded education can arm them with the facts
of what is normal and what is not, empower them to take charge
of their breast health. It is these girls during the ages of 8
to 18 and into their 20s that are using what they eat, what
they drink, what they breathe in, medicines they take, personal
products that they use to build their breast tissue, laying
down the foundation of their future breast health. It is at
this early point also that young women are establishing their
lifelong behavioral patterns.
Concerns have been raised about the value of education
outreach to low-risk populations in the absence of modifiable
risk factors, and we know how complex a disease breast cancer
is with multiple causes, but most of these risks for breast
cancer don't begin at age 45. Rather, they accumulate over a
lifetime beginning at conception. There are periods when breast
cells are hypersensitive to internal and external environmental
insults: the first trimester of pregnancy, the 4 to 10 main
years of breast organogenesis between adolescence and the 20s,
as well as the stretch of time leading up to a woman's first
full-time pregnancy when breast cells are highly active and
immature. So the behaviors of women under age 45 impact not
only their own breast health but the future breast health of
their daughters through pregnancy and modeled behaviors. Some
risks are modifiable and some are not but even the tiny risks
can combine and really add up, particularly during these
sensitive times. An example of a modifiable risk factor is the
obesity epidemic across the United States associated with an
increase in risk of breast cancer in adult women. Extra fat
makes extra hormones that could stimulate extra breast cell
growth. In addition, fat stores hormonally active pollutants
that are lipophilic such as bisphenol A, atrazine, dioxins,
nonylphenols, which could potentially stimulate unhealthy
breast cell growth. And moreover, obesity in childhood predicts
for obesity in adults and obese mothers are more likely to
raise obese daughters. And contrary to the claim that proven
breast cancer risks can't be modified, our obesity epidemic is
doing just that, by accelerating the age of menarche. Early
education and behavioral modification that increases athletic
activity and health weight management early enough could
postpone the onset of puberty, and lessons learned from the
EARLY Act programs will benefit current and future generations
since it is the women under the age of 45 who are in their
prime childbearing and parenting years.
Another example is the opportunity to provide breast cancer
risk reduction strategies to high-risk women. In the EARLY Act,
the 5 to 10 percent of breast cancers due to an inherited
breast cancer genetic abnormality, over 13,000 per year, would
more likely be identified, giving these women a greater chance
to reduce the risk of breast cancer by as much as 90 percent
with prophylactic mastectomies or 50 percent with anti-estrogen
therapies.
It is important that we impart this knowledge along with
what we, the scientific and medical community, know are not
risk factors for breast cancer. Fear certainly breeds myths,
and in our survey many young women believe that only their
mother's family history is important and that breast cancer
skips generations. They also were fearful that they could have
caught breast cancer from their mothers during pregnancy and
breastfeeding. Education can change attitudes, knowledge and
behaviors. We do a disservice to this and future generations by
neglecting to provide this information and facilitate this
dialog.
I am also here today in full support of the Breast Cancer
Patient Protection Act, the Mammogram and MRI Availability Act,
and Eliminating Disparities in Breast Cancer Treatment. I am
prepared to answer any questions about the medical content.
And in conclusion, I thank the chairman, the Subcommittee
and the panel for giving me the opportunity to speak to you
today. Thank you.
[The prepared statement of Dr. Weiss follows:]
Mr. Pallone. Thank you, Dr. Weiss.
Now we will have questions from the members, and I will
start myself, and I wanted to ask Dr. Taplin some questions
initially.
In fiscal year 2007, the National Cancer Institute invested
nearly $600 million in breast cancer research. I understand the
Institute devoted roughly the same amount of resources towards
research on this topic in 2008. Can you describe, Dr. Taplin,
the activities that NIH is supporting, understand how women can
actually prevent breast cancer in the first place and how is
NIH investing in research into improved breast cancer screening
as well as into treatment of breast cancer once it has been
diagnosed, in less than 2 minutes? Whatever you can do.
Dr. Taplin. There are many studies related to breast cancer
at NCI. As you have already noted, we had $572.6 million and
2,146 studies at NCI in fiscal year 2008. Those are
concentrated in several areas but the ones relevant to your
question are prevention, early detection and treatment. We
spent approximately $27 million on prevention, $54 million on
early detection and $169 million on treatment studies, so all
of those are relevant to your question. I think probably the
most interesting piece, and there are several, and many places
we can go among the 2,146 studies we did. The most important, I
think, is the Breast Cancer and Environmental Research Act,
which came from you folks and resulted in a center, a set of
centers to look at basic--the relationship between environment
and biology of young women's breast development, and so there
are biologic studies in women, there is epidemiology study in
young women and there is also a group of people looking,
academicians and educators, looking at how you communicate
these issues to women and to young women especially so that we
can begin to adapt those message to the population that we are
targeting. Those are some of the areas we are working on.
Mr. Pallone. All right. Thank you.
Dr. Brawley, I wanted to ask you, the U.S. Preventative
Taskforce recommends that women over 40 have annual or biannual
mammograms. Your organization recommends annual mammograms for
women over 40 and clinical breast examinations for women in
their 20s or 30s. So unless a woman under 40 has an identified
risk factor, there is no recommendation that she get a
mammogram. Obviously, you know, this relates to Congresswoman
Wasserman Schultz's legislation. Would you elaborate on the
challenges for women under 40 and what can we do for these
women to detect their cancers as early as feasible?
Dr. Brawley. Yes, sir. Thank you for the question. Part of
the answer to your question is mammography is a terrible test
for women who have younger breasts and denser breasts. It is a
terrible test for two reasons. Number one, it is very difficult
for the radiologist to actually make an interpretation of that
X-ray because of the breast density, and number two, radiation
does cause some cancers and causes cancers in young breasts
that are more active in terms of biology. So if you actually
were to give radiation to the breasts of, say, 10,000 women who
are under the age of 20 and do it on an annual rate, there are
some people here--I am not one of them--but they can calculate
how many breast cancers we will ultimately manufacture. Now, in
randomized clinical trials of women who are older, in their
40s, 50s and 60s, we have evidence that mammography clearly
saves lives in screening, so what we like to do is, if a woman
has a mass and she is in her 20s or 30s, if she finds the mass
or if someone finds it on clinical exam, a clinician, be it a
nurse practitioner or a physician, then perhaps doing a
mammogram is appropriate in that one particular individual. If
you have someone who is at very high risk, perhaps the
mammogram is appropriate or perhaps an MRI is, but to do
mammography, mass mammography in the United States in younger
women, it would be literally public health malpractice because
we would actually manufacturing some breast cancers.
Mr. Pallone. Okay. I was going to ask a third question but
I don't have that much time left, so I will move to other
members. The gentleman from Georgia, Mr. Gingrey.
Mr. Gingrey. Mr. Chairman, thank you, and I will ask all of
the panelists, and I thank you for being here, the same
question, and I will start with Dr. Taplin. Some have said that
this bill will spread fear of breast cancer among women who
shouldn't be concerned at such a young stage of their life. As
physician, I believe that arming patients with medical
information is a good practice as long as the message is, of
course, well crafted and well delivered. Do you have any
concerns that keeping this demographic well informed will cause
more harm than good?
Dr. Taplin. That is an excellent question. I think the
problem is that we don't have the evidence to give you the
answer. The problem is that there is some evidence out there
that there is a U-shaped curve, that there is a perfect amount
of fear. A little bit of fear may be helpful. A little bit too
much fear may be harmful, and we don't really know where the
balance is between those things and we don't know enough about
messaging from my standpoint to know what the answer is to the
question you are posing, so that is part of why we are
sponsoring the study that I have already mentioned.
Mr. Gingrey. Dr. Brawley.
Dr. Brawley. Dr. Gingrey, part of the American Cancer
Society's early concern about this bill was that it wasn't
clear who was going to create the messages that were going to
be conveyed to the population. Now that it is very clear that a
committee of scientists appointed by the director of the CDC
will be those that craft the messages that should be conveyed,
we feel very comfortable with educating the population because
we have some assurances that the messages will be created by
experts. So yes, I am agreeing with you and I think that the
messages that would be conveyed through the EARLY Act would be
message that would be scientifically valid. Now, you are
correct that the messaging to individuals, be they youth or be
they people in their 50s, is sort of like a T1 line. The more
health messages that you put forth, you diminish all the other
health messages. Currently, the EARLY Act, as I see it, allows
for messages about diet, messages about exercise and nutrition,
and it actually may be more than a breast health act, much more
a health act because it is going to--if the messages are
received appropriately, it is going to prevent diabetes and
heart disease which actually, by the way, kill more people in
their 30s and 40s, females in their 30s and 40s, than breast
cancer.
Mr. Gingrey. Ms. Luray.
Ms. Luray. Congressman, we agree with Dr. Brawley. We are
pleased how the bill has evolved over time. One study of young
survivors found that 40 percent didn't believe that young women
could even get breast cancer, so part of what we are looking
for is a very targeted campaign that lets women know that while
it is a very small risk, it is possible so that if they feel
that lump, they don't ignore it, or if they go into their
doctor's office and they say I feel like I have a lump and the
doctor says oh, it is just dense breast tissue, don't worry
about it, they can't pursue their concern, and again, based on
factual information pulled together by the appropriate sources.
Mr. Gingrey. Ms. Ness.
Ms. Ness. I will just reinforce what my colleagues here
have said. I think we can't underscore enough the importance of
basing what we do on evidence, and we need the research to tell
us what makes us both in terms of medical practice but also in
terms of how we educate and increase awareness.
Mr. Gingrey. And Dr. Sledge.
Dr. Sledge. Well, I think we all agree that knowledge is
power, but it is only powerful to the degree to which it is
accurate and we can act on it, and I think careful evidence-
based data is actionable. The problem in younger women, to be
honest, is that a lot of what we don't know exceeds what we do
in terms of prevention for young women in terms of early
diagnosis, in terms of the health habits for these women. So I
think physicians and all of us need to be very careful about
pretending more than we currently know.
Mr. Gingrey. Ms. Visco.
Ms. Visco. Well, I couldn't have said it better than Dr.
Sledge did. I think it is very important that message that we
give out are based on evidence, that are factually correct and
that there is something you can actually do about that
information, but I want to make clear that the evidence of
harms that some people are concerned about and we are concerned
about certainly with giving messages about breast cancer to
millions and millions of healthy women, the vast, vast majority
of whom will never get breast cancer, is also the distinct and
clear possibility that has been shown in clinical trials of
unnecessary biopsies, that young women are going to feel things
in their breasts, they are going to have biopsies. Those
biopsies can result in infections and in further harm. So it is
not just the issue of anxiety. That is why it is so incredibly
complex.
Mr. Gingrey. Dr. Weiss, before you respond, and as a breast
cancer surgeon and having treated many, many patients, how
young do you think we really should give this information to
young women? At what age do you start doing that?
Dr. Weiss. Well, this information becomes--it is important
to deliver it when it is most relevant, and we find that girls
are going through puberty earlier and earlier these days and
their breasts are very much on their minds. I think the power
of education is not just delivering education along the way but
correcting this massive misinformation that is out there. Our
surveys have shown that over 20 percent of girls think that
antiperspirant use, getting bumped in the breast, infection,
drug use, drinking coffee, wearing a bra, an underwire bra,
increase the risk of breast cancer, and without the correct
information that is well established today. So I do think that
when you replace myths with facts that you do free these girls
of some of the anxiety they have about growing up and going
from a big girl to a young woman and a young woman to a mature
woman, and I think that that is going to make them more engaged
in proactive healthy behaviors through their life, and while
they are in high school and college, they are in educational
institutions, they are within a system where knowledge delivery
is----
Mr. Gingrey. So educating them as teenagers but not
necessarily preteens?
Dr. Weiss. Well, we have found that a lot of
misinformation, fears and questions present themselves upon
adolescence, and whether or not you want to go back that early
is a question that has to be studied, but those questions
certainly exist, and they are inadequately addressed right now
in current health classes within middle schools and high
schools.
Mr. Gingrey. Mr. Chairman, thank you very much, and thank
all the panelists. I appreciate your response.
Mr. Pallone. Thank you.
Ms. Castor.
Ms. Castor. Thank you, Mr. Chairman, and thank you all.
Your testimony was very insightful, everyone.
Ms. Luray, I would like to thank you and the Susan G. Komen
for the Cure Advocacy Alliance for extending your support to my
Eliminating Disparities in Breast Cancer Act since it was first
introduced last Congress, and I would like to return the thanks
and commend you all for everything that you have done to raise
awareness about disparities in access, access to screening,
access to quality care and treatment. The work you have done
both with the American Society of Clinical Oncologists and the
Metropolitan Chicago Breast Cancer Taskforce to reduce
disparities is very commendable. Could you discuss what you
believe we can do further to educate women about the types of
treatment that they should look to receive after diagnosis so
that women are not in the dark and are empowered to take
control of their health and diagnosis? And please explain how
moving forwards towards rewarding providers for quality care
and ensuring that providers are not rewarded for inadequate
care will help to reduce disparities in treatment.
Ms. Luray. Thank you, Congresswoman, and we appreciate your
leadership as well. I would like to take a minute just to talk
briefly about our partnership with the Metropolitan Chicago
Breast Cancer Taskforce because I think it is partnerships like
this that will give us the data that then can be modeled by
other community-based programs to promote the type of quality
breast cancer care you are talking about across common and
racial ethnic lines. In Chicago, the breast cancer mortality
rate for African-Americans is even worse than in the rest of
the country. African-American women in Chicago have a 68
percent higher mortality rate than white women do, and the
taskforce that we are involved in and are supporting developed
an action plan for three main causes of the disparity, and it
is almost like a tragic Rube Goldberg image because first of
all, they have to get access to mammography, and that is either
physical, where it is, how do you get there, and economic, can
they afford it. But then they have to make sure that is of high
quality, and we as providers and advocates need to make sure
that that mammography is of high quality. And then they have
inadequate access to treatment, and then you have to ask the
same questions about their treatment, is the treatment that
they are getting at the same level of evidence and the same
level of quality that higher-income women are getting. So
again, there are so many barriers that need to be addressed in
terms of ensuring that this disparity in care does not continue
in communities. But we are very hopeful that what we are doing
in Chicago and what we are funding in communities across the
country can help to promote a very high-quality breast cancer
treatment program.
Ms. Castor. Have you targeted other communities besides
Chicago?
Ms. Luray. Yes, we have, and I would be happy to share that
information with your staff.
Ms. Castor. Terrific.
The American Cancer Society found in 2007 that certain
additional screenings after diagnosis and initial treatment are
not equally administered among patients, particularly tests to
ensure that cancer has not spread to nearby lymph nodes. Maybe
Dr. Brawley, can you share with us, have you found that
additional screenings after treatment that are considered
essential are not always accessible? I think you testified to
that account.
Dr. Brawley. Yes, ma'am.
Ms. Castor. To what do you think that we can attribute the
fact that some providers simply are not universally screening
patients for potential spread of their cancer to other areas of
the body?
Dr. Brawley. I think the likelihood--I don't have a study
that I can quote for you but I can tell you as someone who has
practiced medicine, the likelihood is that there can be a
couple different reasons, and what we are talking about there
is follow-up exams after treatment to see if the disease has
come back. Sometimes the physicians simply forget, which is
unfortunate on the part of the physicians. Sometimes the
patients are advised to get the test or it is prescribed and
they don't go and get the test. Sometimes, and this is the more
common problem, there is an affordability problem, copays and
other things that people are just unable to come up with, even
if insured, and I am actually much more concerned very
frequently about the insured individual who doesn't have very
good insurance than even the uninsured individual because quite
a few people today--I just saw a figure, more than 60 percent
of personal bankruptcies are due to health care costs. Quite a
few individuals with breast cancer who need to get a chest X-
ray or even just a simple liver function test that might cost
$80 simply can't afford the continued copays over time so they
don't get those therapies.
Ms. Castor. Thank you, Mr. Chairman.
Mr. Pallone. Thank you.
The gentlewoman from Ohio, Ms. Sutton.
Ms. Sutton. Thank you, Mr. Chairman. Before I begin, I
could ask unanimous consent to enter into the record testimony
from Lifetime Networks.
Mr. Pallone. Without objection, so ordered.
Ms. Sutton. Thank you. And before I turn to the panel, Mr.
Chairman, if I could, I would also just like to recognize Kathy
and Lee Giller, who are here from Akron, Ohio, my district, and
they are town for the 3-day Susan G. Komen Walk, and Kathy was
the number one fundraiser from Cleveland this year, and we are
proud to have her here with us.
As for the panel, thank you very, very much for your
testimony, and it is hard to sit here without thinking about
the people that we have known in our lives who have suffered
from breast cancer, some who have been lost, some who are
fighting the fight now, and of course, wondering about those
who may encounter this battle in the future. Several of you in
your remarks and in your testimony, you stress the need for the
access to quality, affordable health care. Ms. Visco, you talk
about quality, affordable health care for all. I appreciate
that, and I concur. Dr. Brawley, you also talked a lot about
the need to get health care for women. And Dr. Weiss, one of
the things that you said that was striking to me and I think it
is important is, you talked about the unique needs of patients
because not always does one size fit all on this issue. And as
I sit here, one of the people who comes to mind was a woman who
I knew 10 years ago when I was working on these issues in the
State legislature, and her name was Linda. She had breast
cancer. Her mother had had breast cancer, her aunt. It was very
pervasive in her family. Her doctor wanted to treat her
aggressively because of the family history, a doctor attached
to an institution that is of high renown when it comes to
treatment, and the insurance company said no, we are not going
to pay for coverage of that treatment. Her treatment was
delayed because she had to raise money for the treatment. She
ultimately succumbed to cancer. I went to her funeral and I
listened to her young daughter get up and give a report about
an essay that she wrote in school about how her mom was her
hero because not only did she fight against breast cancer, she
fought against the insurance company to try and make things
better for other people in the future.
So my question, I guess, is, that was a decade ago, is it
better now? Are the treatments that the doctor is asking for,
are they covered? Dr. Brawley, would you like to respond?
Dr. Brawley. Yes, and I get in trouble for just saying the
flat-out truth. There have been instances where the insurance
companies have been wrong and there have been instances where
the patients have been wrong and there have been instances
where physicians have been wrong. Ms. Visco talked about bone
marrow transplant for breast cancer. Very quickly, the
thumbnail history of that, in the early 1990s many people
thought high-does chemotherapy with bone marrow transplant
would be beneficial for women at high risk for relapse of
breast cancer. Many hospitals started these bone marrow
transplant programs as a way of making money. Ten State
legislatures passed laws saying that insurance companies had to
pay for them. Many women sued their insurance companies because
they didn't want to pay for it. There was no scientific
evidence to support it. Ultimately, this delayed the NCI
studies that ultimately showed that bone marrow transplant in
breast cancer was more harmful than helpful. This is when
people stop being scientific and start practicing--you know,
earlier I said in my statement that one of the problems with
this disease is, it is a complex disease and we all want to
make it very simple and we all want to have very simple
messages. That is a darn good example of how the simple
message, more chemotherapy must be better, actually killed
women. It wasn't that it was just a waste of money. It actually
killed women.
Ms. Sutton. I appreciate your answer, and I think that
again goes back to the point of, it isn't simple. It is all
very multi-faceted and there are unique considerations in every
story right, so it is very difficult to--
Dr. Brawley. But Congresswoman Sutton, the answer to your
question is what you described does happen where people want to
get the right therapy and someone in an insurance company or
others somehow decides that they should not get the right
therapy. That does happen.
Ms. Sutton. It is one thing to make a determination based
on health needs and it is another thing to make a determination
based on money.
Ms. Luray. And Congresswoman, if I may add, there is the
issue of access to experimental treatment and how that access
is granted and whether or not it is based on scientific
evidence but there is also access to ongoing treatment that
many of our patients experience. There was a young woman here,
Anna van Lear, who had to fight her insurer after being
diagnosed with breast cancer, had to fight to get her MRI
because of her age, and that occurs again an again, so the
experimental treatments are one issue but it is the ongoing
need for surveillance care, side effects, et cetera and having
to battle the insurer every day, and of course the economic
loss that they experience too because of the high out-of-pocket
expenses.
Ms. Sutton. Thank you.
Dr. Weiss.
Dr. Weiss. The cost of negotiating with the insurance
companies throughout each clinical day has lengthened my day by
2 hours and it has slowed down the urgent feeling a patient--
you know, her ability to get what she needs when she needs it,
and we have doubled our office staff just to get enough people
on the phones to get the authorizations for tests or for
treatment or see a new doctor or to get a second opinion and
maybe even a third opinion in a complex case. So in terms of
the cost of health care, I don't think that these barriers are
saving us money, I think that we need these laws today to give
the physicians the ability to deliver the optimal care in terms
of early detection, treatment and surveillance of women beyond
their initial treatment.
Ms. Sutton. Thank you.
Mr. Pallone. Thank you.
The gentleman from Iowa, Mr. Braley.
Mr. Braley. Thank you, Mr. Chairman.
Dr. Brawley, I want to follow up with your observation
because you might find it interesting to note that I used the
exact example that you were describing in an earlier markup we
were having on health care in this same conference room, and
one of the things we can't ignore is sometimes the political
implications of important public policy decisions we are making
that involve academic research, scientific research, medical
research and most importantly people. Because the story I used
was from a book by Shannon Brownley. It was given to me by a
family practice doctor, ``Overtreatment'' and this exact
scenario that you were describing is mentioned at length in
that book, and this very conference room was filled with women
who were getting high-does chemotherapy with bone marrow
transplants and the person who developed that treatment
methodology was sitting in these witness chairs and turned with
his back to members of Congress and had all those women stand
up and then said to the members sitting in this hearing room,
``Fifty percent of these women will be dead if you don't
approve funding for this treatment.'' So we are really talking
about a high-stakes poker game here, and I think what all of us
want to get to is a health care delivery system that is based
upon evidence-based decision making that makes sense for the
greatest portion of the population.
I had the opportunity before I came to Congress to
represent a retired swimming coach who was diagnosed with
prostate cancer, and the treatment of choice that he decided
upon was not covered by Blue Cross/Blue Shield through an
employer-sponsored health care plan, and after a lot of
research and investigation, we determined that Blue Cross/Blue
Shield was also the administrator for Medicare in the State of
Iowa and covered that form of treatment as non-experimental. So
when we are talking about making health care available to women
who have been diagnosed with breast cancer, we all need to know
the best evidence available and we also need to eliminate these
bizarre distinctions between coverage options so that no woman
who has been diagnosed with breast cancer is faced with the
difficult decision of deciding how she is going to pay for
treatment under one program that she could get if she was old
enough to be covered under Medicare or something else.
And so one of the things I would like to ask the panel
about is why this particular class of women, younger women who
do not fit traditional theories of who is most likely to be
diagnosed with breast cancer, why are they more vulnerable than
other segments of the population, if they are, and what types
of attitudes do they bring to their treatment that make them
more challenging as a group, if they are, than other groups of
women?
Dr. Brawley. If I could start first, sir, and thank you. I
truly do believe that adequate health care reform includes
reforming how we consume health care. We have to all learn to
be more scientific and appreciate the science and the evidence.
One aspect of the EARLY bill which I think is important is, it
actually puts aside some money to address the very questions
that you just addressed: what is different about younger women,
how can we help younger women who have this disease. That is
actually some of the most important parts of the EARLY bill.
The ACS had some difficulty with the bill early on because some
of the messages that were in it were not messages that we
thought we could support. We wanted evidence-based good
messages. Now we have scientists and survivors in a committee
coming up with what the evidence-based messages should be, but
one thing this bill always had was research to look at the
quality of life needs of women with breast cancer, women who
have been diagnosed who are in their 20s, 30s and 40s. That has
always been a very good part of this bill.
Mr. Braley. Yes?
Ms. Visco. I would say that we don't know very much about
breast cancer in any age group. There are some data that
younger women are more likely to be diagnosed with triple
negative breast cancer, a specific type of breast cancer, for
which we have treatments for estrogen receptor-positive breast
cancer that work well. We have treatments for HER2
overexpressing breast cancer that works well. For triple
negative, we don't yet have targeted therapies that work well.
So more research into looking at that type of breast cancer,
although there are a number of new possibilities in clinical
trials now.
There is also the issue of fertility. I was 39 when I was
diagnosed. I had chemotherapy. I did go into premature
menopause. I didn't have the opportunity to have more children.
There are side effects with treatment no matter how old you
are. That is a side effect of treatment for younger women. It
is something we need to do more research on. But we just don't
have the information. We just don't know enough about breast
cancer and certainly not enough about breast cancer in younger
women.
Dr. Sledge. I can only add a little, but these women are
vulnerable in many ways. One is, as Fran has just mentioned,
they are biologically vulnerable. They tend to have much more
aggressive cancers than do older women, cancers that grow
rapidly, cancers that are more likely to spread to other parts
of the body at an earlier point in time, cancers that are less
targetable in terms of hormonal therapy or HER2-targeted
therapy, so they are biologically vulnerable. They are
economically vulnerable. These are women who by and large are
less likely to have insurance just because they are at an
earlier point in their life and they are not as far along up
the chain that would allow them to have a good health care
ability to cushion any blows. Economically, they can't cushion
the blows because they don't have any money in the bank.
Socially, they are vulnerable because they perhaps just started
their family or just got married. They have to worry about
these fertility issues that a woman who is 20 or 30 years older
would not have to worry about. So across the board,
Congressman, they are far more vulnerable than our older
patients.
Mr. Braley. Are the criteria that the AJCC staging manual
is using for breast cancer adequate to try to delineate any of
these specific concerns that you have mentioned here today or
are they using broad groupings of women that don't allow us to
have the ability to drill down and define criteria that would
be more age-appropriate for different segments of the
population?
Dr. Brawley. Sir, I can only give my opinion as a physician
who treats breast cancer patients. I think the AJCC which does
the stating manual has done a good job although it actually
being reevaluated right now as we speak. I think one of the
great problems we have in breast cancer is, our definition of
what cancer is actually comes from some German pathologist in
the 1840s, and we have not actually brought the definition into
a molecular or genetic age. We are still using the same
science, looking at it under a microscope with a glass to say
this is cancer that we used 160 years ago, and one of the
challenges to us in science is to find a genetic way to look at
a tissue and say that this particular tissue in this woman's
breast is going to behave in this particular way over the next
20, 30, 40 years and that is how we ought to treat it. This
particular tissue is going to be very aggressive so we need to
treat it aggressively. This other woman's breast cancer is
going to be less aggressive so we will treat it or maybe even
watch it and be less aggressive. We have not gotten there but
that is where hopefully the science is going to take us. That
is hopefully where the sequencing of the human genome is going
to take us, and maybe 20 years from now we will be talking
about those tests.
Mr. Braley. Thank you.
Dr. Weiss. I would just also add that in the care of any
woman who has been diagnosed with breast cancer who is also a
mother, one of her biggest concerns is, what does my diagnosis
mean for the women in my family, and that question comes up all
the time and so that is an area of research that I know we are
all involved in that deserves much better answers because if
you don't deal with that profound fear and concern for her, you
haven't really taken care of the whole woman or her whole
family.
Mr. Braley. Thank you very much.
Mr. Pallone. Thank you all. I know it has been a long day.
We had a delay and had votes and all that, but I thank you for
bearing with us, and this was very enlightening in terms of the
whole issue. As I said earlier, this was a legislation hearing
so we are going to have to sift through all this and figure out
what is in the health care reform and what isn't, but we do
intend to try to move the bills that were considered today. And
let me just mention that members can still submit written
questions to you. They are supposed to submit them within 10
days and then the clerk notifies you, so we may ask you to
respond in writing to some additional questions. But thanks
again, and without objection, this meeting of the Subcommittee
is adjourned.
[Whereupon, at 4:00 p.m., the Subcommittee was adjourned.]
[Material submitted for inclusion in the record follows:]