[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








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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

                              ----------                              
                                                                   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:]





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