[House Hearing, 110 Congress]
[From the U.S. Government Publishing Office]




 ADDRESSING THE SCREENING GAP: THE NATIONAL BREAST AND CERVICAL CANCER 
                        EARLY DETECTION PROGRAM

=======================================================================

                                HEARING

                               before the

                         COMMITTEE ON OVERSIGHT
                         AND GOVERNMENT REFORM

                        HOUSE OF REPRESENTATIVES

                       ONE HUNDRED TENTH CONGRESS

                             SECOND SESSION

                               __________

                            JANUARY 29, 2008

                               __________

                           Serial No. 110-52

                               __________

Printed for the use of the Committee on Oversight and Government Reform


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                               index.html
                      http://www.house.gov/reform


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             COMMITTEE ON OVERSISGHT AND GOVERNMENT REFORM

                 HENRY A. WAXMAN, California, Chairman
TOM LANTOS, California               TOM DAVIS, Virginia
EDOLPHUS TOWNS, New York             DAN BURTON, Indiana
PAUL E. KANJORSKI, Pennsylvania      CHRISTOPHER SHAYS, Connecticut
CAROLYN B. MALONEY, New York         JOHN M. McHUGH, New York
ELIJAH E. CUMMINGS, Maryland         JOHN L. MICA, Florida
DENNIS J. KUCINICH, Ohio             MARK E. SOUDER, Indiana
DANNY K. DAVIS, Illinois             TODD RUSSELL PLATTS, Pennsylvania
JOHN F. TIERNEY, Massachusetts       CHRIS CANNON, Utah
WM. LACY CLAY, Missouri              JOHN J. DUNCAN, Jr., Tennessee
DIANE E. WATSON, California          MICHAEL R. TURNER, Ohio
STEPHEN F. LYNCH, Massachusetts      DARRELL E. ISSA, California
BRIAN HIGGINS, New York              KENNY MARCHANT, Texas
JOHN A. YARMUTH, Kentucky            LYNN A. WESTMORELAND, Georgia
BRUCE L. BRALEY, Iowa                PATRICK T. McHENRY, North Carolina
ELEANOR HOLMES NORTON, District of   VIRGINIA FOXX, North Carolina
    Columbia                         BRIAN P. BILBRAY, California
BETTY McCOLLUM, Minnesota            BILL SALI, Idaho
JIM COOPER, Tennessee                JIM JORDAN, Ohio
CHRIS VAN HOLLEN, Maryland
PAUL W. HODES, New Hampshire
CHRISTOPHER S. MURPHY, Connecticut
JOHN P. SARBANES, Maryland
PETER WELCH, Vermont

                     Phil Schiliro, Chief of Staff
                      Phil Barnett, Staff Director
                       Earley Green, Chief Clerk

                  David Marin, Minority Staff Director























                            C O N T E N T S

                              ----------                              
                                                                   Page
Hearing held on January 29, 2008.................................     1
Statement of:
    Carey, Gail, recipient of breast and cervical cancer early 
      detection program benefits and volunteer, American Cancer 
      Society; Otis Brawley, medical director, American Cancer 
      Society; Shelley Fuld Nasso, director, public policy, Susan 
      G. Komen for the Cure Advocacy Alliance; Pama Joyner, 
      Ph.D., director, Breast and Cervical Health Program, 
      Washington State Department of Health; and Thomas Hoerger, 
      director, RTI-UNC Center for Excellence in Health Promotion 
      Economics and RTI Health Economics and Financing Program...    56
        Brawley, Otis............................................    63
        Carey, Gail..............................................    56
        Fuld Nasso, Shelley......................................    76
        Hoerger, Thomas..........................................   105
        Joyner, Pama.............................................    92
    Henson, Rosemarie, Deputy Director, National Center for 
      Chronic Disease Prevention and Health Promotion, U.S. 
      Centers for Disease Control and Prevention, accompanied by 
      Lisa Mariani, Assistant Branch Chief, Program Services 
      Branch, Division of Cancer Prevention and Control, National 
      Center for Chronic Disease Prevention and Health Promotion, 
      U.S. Centers for Disease Control and Prevention............    23
Letters, statements, etc., submitted for the record by:
    Brawley, Otis, medical director, American Cancer Society, 
      prepared statement of......................................    65
    Carey, Gail, recipient of breast and cervical cancer early 
      detection program benefits and volunteer, American Cancer 
      Society, prepared statement of.............................    60
    Cummings, Hon. Elijah E., a Representative in Congress from 
      the State of Maryland, prepared statement of...............    14
    Davis, Hon. Tom, a Representative in Congress from the State 
      of Virginia, prepared statement of.........................    11
    Fuld Nasso, Shelley, director, public policy, Susan G. Komen 
      for the Cure Advocacy Alliance, prepared statement of......    79
    Henson, Rosemarie, Deputy Director, National Center for 
      Chronic Disease Prevention and Health Promotion, U.S. 
      Centers for Disease Control and Prevention, prepared 
      statement of...............................................    26
    Hoerger, Thomas, director, RTI-UNC Center for Excellence in 
      Health Promotion Economics and RTI Health Economics and 
      Financing Program, prepared statement of...................   107
    Issa, Hon. Darrell E., a Representative in Congress from the 
      State of California, prepared statement of.................    20
    Joyner, Pama, Ph.D., director, Breast and Cervical Health 
      Program, Washington State Department of Health, prepared 
      statement of...............................................    94
    Waxman, Chairman Henry A., a Representative in Congress from 
      the State of California, prepared statement of.............     4






















 
 ADDRESSING THE SCREENING GAP: THE NATIONAL BREAST AND CERVICAL CANCER 
                        EARLY DETECTION PROGRAM

                              ----------                              


                       TUESDAY, JANUARY 29, 2008

                          House of Representatives,
              Committee on Oversight and Government Reform,
                                                    Washington, DC.
    The committee met, pursuant to notice, at 9:50 a.m., in 
room 2154, Rayburn House Office Building, Hon. Henry A. Waxman 
(chairman of the committee) presiding.
    Present: Representatives Waxman, Davis of Virginia, 
Maloney, Cummings, Kucinich, Watson, Higgins, McCollum, Van 
Hollen, Welch, Shays, Platts, Issa, and Sali.
    Staff present: Karen Nelson, health policy director; Sarah 
Despres, senior health counsel; Naomi Seiler, counsel; Teresa 
Coufal, deputy clerk; Caren Auchman, press assistant; Kerry 
Gutknecht, William Ragland, and Miriam Edelman, staff 
assistants; Tim Westmoreland, consultant; David Marin, minority 
staff director; Jennifer Safavian, minority chief counsel for 
oversight and investigations; Benjamin Chance, minority clerk; 
Jill Schmalz, minority professional staff member; and John 
Ohly, minority staff assistant.
    Chairman Waxman. The meeting of the committee will come to 
order.
    Almost everyone in this room has been touched by cancer 
either directly or by a friend or family member. Great medical 
advances have been made over the last few decades, but cancer 
continues to be a cruel and difficult opponent. We still can't 
prevent most cancers, and there are a number of cancers we 
can't cure.
    But in the case of breast and cervical cancers, we have a 
very effective tool; early detection. For the many women and 
some men who will be diagnosed with breast cancer, the earlier 
the cancer is detected, the better the chance of survival. For 
cervical cancer, tests let doctors find abnormal cells before 
they even become cancerous. In other words, for cervical 
cancer, early detection is prevention.
    The basic tools to give women a fighting chance against 
breast and cervical cancer, the mammogram and the pap smear, 
have been around for many years, but what we have seen over the 
last several decades is that many women were not getting 
screened at the recommended intervals or at all.
    Women who were poor, women who were uninsured and often 
women of color were not getting tested at the same rates as 
other women. These women were left to get cancer diagnoses at 
later stages, often once it was too late to be treated 
effectively. Many women in the United States who have died of 
cervical cancer never had a pap test.
    In 1990, Congress stepped in to give women access to early 
cancer detection. With strong bipartisan support and after 
hearing testimony of the Vice President's wife, Marilyn Quayle, 
the Vice President at that time, Congress passed a law that 
created a program to cover breast and cervical cancer 
screenings to low income, uninsured and underinsured women. By 
passing this law, we sent the message that no woman should have 
to forego lifesaving tests because she couldn't afford them.
    In 2000, we strengthened this program by passing another 
law allowing States to cover these women if a cancer is 
detected within their Medicaid programs. Since that time, all 
States have elected this Medicaid option.
    We are here today to talk about what the National Breast 
and Cervical Cancer Early Detection Program has accomplished 
and what is left to be done. Over the past 16 years, the 
program has served over 3 million women. In 2006 alone, the 
program detected over 4,000 cases of breast cancer and over 
5,000 cervical cancers and precancerous lesions.
    Every single one of those cases represents a woman who 
might otherwise not have known she had cancer and might not 
have had the opportunity to fight it. For these women, the 
program has been successful.
    But, overall, the women served only represent less than 15 
percent of the eligible population. There are so many more 
women whose lives this program could save if only the Federal 
budget provided greater resources.
    It is ironic that we spend money to create cancer awareness 
and urge women to get mammograms and then have clinics with 
long waiting lists for actually getting them. It is tragic that 
this underfunding and these waiting lists undoubtedly mean that 
women whose cancers could have been caught early and treated 
instead find out when their disease has progressed and spread.
    This program has worked hard to address a particularly 
vexing problem, the issue of racial and ethnic disparities. 
This is critical because disparities in screening contribute to 
disparities in survival rates. For example: While screening 
rates for African American women have recently equaled those of 
White women, African American women face a higher mortality 
rate, possibly because their cancer is detected at later 
stages; a Hispanic woman diagnosed at the same age and at the 
same stage of cancer as a non-Hispanic White woman is 20 
percent more likely to die within 5 years; and, for both 
cancers, women without insurance are screened at far lower 
rates than women who are insured.
    These disparities mirror countless disparities in 
healthcare and health outcomes in the United States; 
disparities that we as Congress and as a Nation have to 
continue to investigate and address.
    Today, we have the opportunity to focus on an area where an 
existing Government program is working hard to address these 
disparities, but which faces a serious challenge because of 
limited funding. We have some outstanding witnesses who are 
here to share their expertise about breast and cervical cancer 
and about the national screening program.
    I know that on both sides of the aisle we care deeply about 
this issue, and I look forward to an interesting and 
constructive discussion.
    [The prepared statement of Chairman Henry A. Waxman 
follows:]

[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]


    Chairman Waxman. Mr. Davis, I want to recognize you for an 
opening statement.
    Mr. Davis of Virginia. Thank you, Mr. Chairman, for calling 
this hearing on the National Breast and Cervical Cancer Early 
Detection Program administered by the Centers for Disease 
Control and Prevention [CDC].
    Today's discussion gives the committee an important 
opportunity to emphasize the priceless value of screening and 
early detection in the fight against breast and cervical 
cancers. We need to know what works, what we can do to make it 
work better to maximize the reach and effectiveness of Federal 
funding for screening low income, underinsured and uninsured 
women.
    In the United States, one in eight women will be diagnosed 
at some point in their life with breast cancer. Yet, due to 
improvements in screening and treatments, breast cancer 
survival rates have risen steadily.
    Likewise, over the last three decades, the cervical cancer 
incidents and mortality rate have declined by 50 percent. 
Cervical cancer is actually preventable and curable if it is 
detected early through proper screening.
    These are important advances, but not all American women 
are sharing equally in these critical health gains. According 
to the CDC, essential screening tools--mammograms and pap 
tests--are underused by women who have less than a high school 
education, are older, live below the poverty level or are 
members of certain racial or ethnic minority groups.
    Failure to get appropriate screening has, in part, resulted 
in these populations of women being diagnosed later and having 
higher mortality rates than the national average. Timely 
screening can prevent needless deaths.
    Recognizing the value and importance of providing 
preventive services to low income women, in 1990, the Congress 
created the National Breast and Cervical Cancer Early Detection 
Program. Since 1991, the program has served almost 3 million 
women and diagnosed 26,000 breast cancers, 88,000 precursors to 
cervical lesions and 1,700 cervical cancers. The 1990's saw the 
program grow into maturity.
    Every $3 in Federal funding must be matched from State or 
local sources and at least 60 percent of Federal funds must be 
spent on direct clinical services. Today, there are more than 
65 State and tribal grantees who are given substantial 
flexibility to manage individual programs.
    If a woman is diagnosed with cancer through these screening 
measures, a program case manager will assist her in getting the 
appropriate treatment. But because the program serves uninsured 
and underinsured women, finding affordable treatment can pose a 
significant challenge.
    To address the gap between diagnosis and treatment, 
Congress, in 2000, allowed States to amend their Medicaid plans 
to cover treatment needs identified by this early detection 
program. All 50 States have amended their plans to allow these 
women to have access through Medicaid.
    Despite clear success in reaching a vulnerable population, 
the percentage of eligible women reached through the program 
remains low nationwide and varies significantly from State to 
State. The CDC and the U.S. Census Bureau found in 2002-2003 
that only 13 percent of eligible women across the United States 
received a program-funded mammogram. Likewise, only 6 percent 
of eligible women received a pap test through the program.
    Within that number, the study found a staggering variation 
in screening rates from just 2 percent to as high as 63 percent 
among eligible women between the ages of 40 to 64, the highest 
priority population.
    This is an unmistakable indication some States have found 
ways to be far more effective than others at using Federal 
funds to reach eligible women. Is it just a question of money 
or are there important lessons all States can learn about 
increasing the efficiency and effectiveness of this vital 
public health effort?
    Despite the fact that prevention pays for itself many times 
over in avoided costs and improved lives, resources for 
programs like this will always be more limited than anyone 
would like. Today, we need to talk about appropriate funding 
levels and about the innovations in best practices that will 
make sure those funds reach as many women as possible.
    To help us with that important discussion, I want to thank 
our panelists today and I want to welcome Dr. Thomas Hoerger 
with RTI International. He is leading a study of the long term 
cost effectiveness of the CDC's early detection program. The 
first phase of the study will be published next month, and 
those findings should help us understand some of the factors 
causing the wide variability between State program costs for 
screening and diagnostic services.
    He is here at the request of the minority members. We 
appreciate his willingness and that of all of our witnesses 
today to take time to testify today.
    Thank you very much.
    [The prepared statement of Hon. Tom Davis follows:]

[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Chairman Waxman. Thank you very much, Mr. Davis.
    I want to give any Member who wishes an opportunity to make 
an opening statement that chance.
    Mr. Cummings.
    Mr. Cummings. Thank you very much, Mr. Chairman, and I 
thank you for holding this vitally important hearing to examine 
the National Breast and Cervical Cancer Program which is 
administered by the Centers for Disease Control and Prevention.
    As you know, breast and cervical cancers pose a real danger 
to women's health. Nationwide, breast cancer is the leading 
cause of death for women between the ages of 20 and 59. In my 
home State of Maryland, the American Cancer Society estimated 
in 2004 that 4,090 new cases of breast cancer will be diagnosed 
and 760 women will die of breast cancer.
    The statistics for cervical cancer are equally troubling. 
An estimated 11,150 women were diagnosed with cervical cancer 
in the United States last year. Notably, these diseases can be 
treated if caught early, but far too many women never get that 
chance.
    Minority women are more likely to suffer from both diseases 
primarily because of poor access to healthcare. African 
American women develop cervical cancer at rates approximately 
50 percent higher than White, non-Hispanic women. African 
Americans are also less likely than White women to be diagnosed 
at an early stage when the cancer is easier to treat.
    Even more troubling, African American women are less likely 
than Caucasian women to have breast cancer but they are 36 
percent more likely to die from the disease. This higher 
mortality rate has been attributed to late diagnosis, lower 
access to early treatment and biological differences.
    I have had the pleasure of working with Dr. Vanessa 
Sheppard of the Lombardi Cancer Center at Georgetown 
University, an African American woman and cancer survivor 
herself who is conducting research into how to deliver 
lifesaving care to minority women. With grant support from the 
Susan G. Komen Foundation and the National Cancer Institute, 
Dr. Sheppard has developed two programs to help African 
American women and Latino breast cancer patients make informed 
decisions about their treatment. Both programs match patients 
with patient navigators who are often breast cancer survivors 
themselves.
    Individuals like Dr. Sheppard are making a real difference 
for minority women and, as a result, we have begun to close the 
screening and treatment gap that is at the core of the 
unacceptable disparities that exist.
    Further, programs like the CDC's National Breast and 
Cervical Cancer Initiative are vitally important to closing the 
screening gap. We know that we must lower barriers to care for 
lower income, uninsured and underinsured women, and this 
program aims to do just that. I am deeply concerned with recent 
cuts the program suffered and am interested to hear how it has 
affected the CDC's ability to achieve its mission.
    I look forward to the testimony of today's witnesses, and I 
yield back the remainder of my time.
    [The prepared statement of Hon. Elijah E. Cummings 
follows:]

[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]


    Chairman Waxman. Thank you very much, Mr. Cummings.
    I am willing to recognize any Member who wishes to make an 
opening statement on this side of the aisle. We will give you 
another minute if you want.
    OK, Mr. Issa, please.
    Mr. Issa. I will be brief and ask that my entire statement 
be put in the record.
    Mr. Chairman, I just want to thank you for holding this 
bipartisan hearing.
    I believe that it is very clear through the last Congress 
and into this Congress that we have a great opportunity to deal 
with particularly these two most detectable and preventable 
cancers, breast and cervical cancers, and it is that awareness 
and funding that is so critical.
    I am proud that this previous Congress, in 2006, passed the 
Gynecological Cancer Education and Awareness Act known as 
Johanna's Law and has authorized funding for gynecological 
cancer education and awareness programs. It is clear we can do 
more.
    It is clear that in America the difference between life and 
death is not necessarily access to healthcare but an awareness 
that you need care. So it is, in fact, those preventions, the 
early detection that would prevent the loss of at least 82,000 
women who are diagnosed every year with gynecological cancer 
and the 27,000 who die, mostly needlessly, for lack of early 
detection.
    As I said, I will put the rest of my statement in the 
record, and I thank the chairman for holding this hearing.
    [The prepared statement of Hon. Darrell E. Issa follows:]

[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Chairman Waxman. Thank you, Mr. Issa.
    Ms. Watson.
    Ms. Watson. Thank you so much, Mr. Chairman. I join my 
colleagues in thanking you for having this hearing.
    Breast cancer has a disproportionate impact on the 
different racial and ethnic groups. African American women are 
less likely than Caucasian women to have breast cancer. 
However, African American women are 36 percent more likely to 
die from breast cancer disparity.
    That began in the 1980's and continues over time. The 
higher mortality rate is due to late diagnosis and lower access 
to early treatment.
    Breast cancer is the most common cause of cancer death in 
Hispanic women. Hispanic women remain less likely than 
Caucasian women to have had a mammogram in the past 2 years. 
Screening access varies significantly by insurance status.
    The diagnosis of 90 percent of women with breast cancer 
will survive their disease at least 5 years. Breast-conserving 
surgery or lumpectomy followed by local radiation therapy has 
replaced mastectomy as a preferred surgical approach for 
treating women with early breast cancer. Routine mammographic 
screening is an accepted standard for the early detection of 
breast cancer.
    Cervical cancer is considered a preventable disease. It 
usually takes a very long time for precancerous lesions to 
progress to invasive cancers, and we have effective methods 
that can detect precancerous that can generally be cured 
without serious side effects.
    Screening programs that are most effective in the United 
States have led to the drastic decline in the numbers of 
cervical cancer deaths in the last 50 years. Almost all cases 
of cervical cancer can be prevented through screening. For 
women who end up with cervical cancer in developed nations, 60 
percent of them either have never been screened or haven't been 
screened in the last 5 years.
    The importance of regular cervical cancer screening cannot 
be overstated. The importance of early screening and for low 
income women who would otherwise lack access to services are 
most needed.
    So I thank you for bringing an experts panel and look 
forward to hearing from you. Thank you very much, Mr. Chairman.
    Chairman Waxman. Thank you very much, Ms. Watson.
    Ms. McCollum, do you wish to make an opening statement?
    Ms. McCollum. Thank you, Mr. Chair.
    I agree with all the comments that my colleagues have made 
before in generalities, if I may take a second and just talk 
about some specifics.
    Minnesota has better health indicators and better rates of 
insurance than many States, and traditionally we are considered 
a homogeneous, high income, high insurance rate State.
    However, the diversity of Minnesota is growing and is 
changing. We have populations of Hmong, Somali, Oromo, Tibetan, 
Latino, resulting in high translation and high outreach costs, 
and many of these people are the folks that are underinsured or 
sometimes not insured at all.
    Many States are facing economic problems. Minnesota is one 
of them and, as our State moves forward with its budget 
process, it is my fear that once again the State will look to 
this program in cutting back.
    There has been much focus on minority women, but I would 
like to speak for the Native American women just to say that 
they are often looked at as having access to wonderful 
healthcare through the Bureau of Indian Affairs. That is not 
the case. So I hope our testimony illuminates what Native 
American women could expect in outreach.
    Mr. Chair, it is also understanding, because Minnesota has 
made some important investments in the health of our population 
and we have done fairly well, as I said earlier, in providing 
some access to insurance, this in fact may harm Minnesota in 
the long run. Minnesota has been very efficient in delivering 
its healthcare.
    All too often then when the Federal Government looks at 
programs, we don't look at the ways Minnesota could continue to 
improve, to do better, to reach out to more women. Instead, 
they say, Minnesota, you have done a good job. We are not going 
to be involved in aggressively helping you do that next phase.
    So, Mr. Chair, I thank you for this important hearing. 
There is much work to do, and I look forward for us all working 
together on this very important issue facing families.
    Chairman Waxman. Thank you very much.
    Mr. Welch, do you have an opening statement?
    Mr. Welch. I don't.
    Chairman Waxman. Mrs. Maloney.
    Mrs. Maloney. Well, first of all, I truly and deeply want 
to thank the chairman for focusing on health, and this builds 
on his long commitment. His hearings and focus on the dangers 
of cigarettes really revolutionized and saved lives in our 
country.
    Democrats are very committed to screening and prevention in 
healthcare. As he mentioned, we passed legislation to have 
Medicaid cover screenings. One of my first bills that passed 
Congress actually had Medicare cover the screening for breast 
cancer, and I have a bill in now that would have private 
insurance companies, require them to include screenings for 
cervical, breast and prostrate.
    So this legislation and this hearing before us today will 
help save lives. We can screen. We need every tool we can get 
to get out there and screen better so that we are helping to 
save lives in our country.
    I thank the chairman for his leadership on this issue.
    Chairman Waxman. Thank you very much.
    Mr. Shays.
    Mr. Shays. Thank you, Mr. Chairman. I just want to thank 
our witnesses and thank you and the ranking member for holding 
this hearing. It is a very important hearing, and it is nice to 
have some hearings that we both can focus on together.
    Thank you.
    Chairman Waxman. Thank you.
    For our first witnesses, we have Rosemary Henson who is the 
Deputy Director for the National Center for Chronic Disease 
Prevention and Health Promotion for the Centers for Disease 
Control. Ms. Henson is responsible for providing leadership and 
guidance on activities addressing the leading cause of 
premature death and disability including cancer as well as 
heart disease, stroke, diabetes, arthritis and obesity.
    She is accompanied by Lisa Mariani, the Assistant Branch 
Chief of the National Breast and Cervical Cancer Early 
Detection Program.
    Ms. Henson will testify about the program's history, 
operations and challenges. Both she and Ms. Mariani are here to 
answer questions, and accordingly both witnesses are going to 
be sworn in which is the practice of our committee. So, if you 
would, please rise and raise your right hands.
    [Witnesses sworn.]
    Chairman Waxman. The record will indicate the witnesses 
answered in the affirmative.
    We are pleased to have you here. Your prepared statements 
will be made part of the record in full.
    We would like to ask you, if you would, to try to keep 
within a 5-minute timeframe for the oral presentation. We will 
have a clock. That little part there will be green when it is 
running, yellow when you have a minute to sum up, and then when 
it is red the time is expired.
    Ms. Henson.

STATEMENT OF ROSEMARIE HENSON, DEPUTY DIRECTOR, NATIONAL CENTER 
   FOR CHRONIC DISEASE PREVENTION AND HEALTH PROMOTION, U.S. 
CENTERS FOR DISEASE CONTROL AND PREVENTION, ACCOMPANIED BY LISA 
   MARIANI, ASSISTANT BRANCH CHIEF, PROGRAM SERVICES BRANCH, 
DIVISION OF CANCER PREVENTION AND CONTROL, NATIONAL CENTER FOR 
 CHRONIC DISEASE PREVENTION AND HEALTH PROMOTION, U.S. CENTERS 
               FOR DISEASE CONTROL AND PREVENTION

    Ms. Henson. Thank you. Good morning. I am Rosemarie Henson. 
I am the Deputy Director of the National Center for Chronic 
Disease Prevention and Health Promotion at the Centers for 
Disease Control and Prevention and allow me to express my 
gratitude to Chairman Waxman and the distinguished members of 
the committee for giving CDC this unique opportunity to discuss 
the National Breast and Cervical Cancer Early Detection 
Program.
    In my brief remarks today, I will refer to the program as 
the B&C Program.
    I would like to begin with a survivor story. Nancy is a 60 
plus Hispanic artist who lives in San Diego, CA. While 
listening to the radio in her studio on an October day, she 
heard a commercial promoting mammograms as part of Breast 
Cancer Awareness Month.
    Guess what? She hadn't had a mammogram for over 10 years 
mainly because she didn't have health insurance. But she called 
the number that the radio displayed in its ad, and she was 
referred to the B&C Program at the Scripps Mercy Hospital.
    The mammogram revealed a lump in her left breast which, 
after a sonogram and biopsy, was found to be an early stage 
breast cancer. Because the cancer had not spread, she received 
surgery through the referral to the California Cancer 
Collaborative followed by chemotherapy and radiation, and today 
she is cancer-free.
    Nancy's story can be retold by hundreds of women across the 
country who have been in touch with the B&C Program in their 
successful battles against breast cancer, the second most 
common cause of cancer death in women. Many other women have 
been spared of early deaths from cervical cancer due to the 
detection through pap tests provided by the B&C Program.
    The history of all of these success stories goes back to 
1990. That year, to help improve access to mammograms and pap 
tests among low income, uninsured and underinsured women, 
Congress passed the Breast and Cervical Cancer Mortality 
Prevention Act.
    It authorized CDC to create the B&C Program which Congress 
began by funding five States at a total $30 million in fiscal 
year 1991. It has grown to be a nationwide program with a 
funding level of $182 million in fiscal year 2008.
    The B&C Program provides a full range of screening services 
from screening tests to diagnostic tests to referrals to 
treatment in all 50 States, the District of Columbia, five U.S. 
territories and 12 tribes or tribal organizations. Today, the 
B&C Program has in place a vast national network of more 17,000 
screening sites.
    Critical to the success of the B&C Program, its 
comprehensive and its coordinated approach is key. First, 
medically underserved women now have access to systematic 
screening services through the existing healthcare delivery 
system.
    Second, the public awareness and outreach efforts inform 
women of the need for screening and help them get to services.
    Third, public education addresses the risks for breast 
cancer and cervical cancer, recommended screening intervals and 
the fears that women may have about the screening process.
    And, fourth, professional education and quality assurance 
ensure top quality screening and followup.
    And, finally, tracking systems and case management ensure 
that women receive timely and complete followup for diagnostic 
care and referrals to treatment when needed.
    Also critical to the B&C Program's continued success are 
active partnerships with national and private sector 
organizations like the American Cancer Society, Susan G. Komen 
for the Cure and the Avon Foundation. These partnerships are 
critical because they expand the reach, the capacity and 
resources of the B&C Program.
    CDC places a very high priority on tightly managing the 
program. We continuously monitor the performance of funded 
programs to assess the completeness of followup for women 
screened for breast and cervical cancers, the timeliness of 
followup and the timeliness of the start of treatment.
    In recent years, Congress has strengthened the B&C Program 
by amending Title XIX of the Social Security Act to give States 
and tribes the option to offer women screened through the B&C 
Program, treatment through Medicaid.
    Of course, the most important measure of success of the B&C 
Program is its effectiveness in reaching medically underserved 
women. Let me now review those data with you and the key 
outcomes. Through 2006, the program served more than 3 million 
women and provided 7 million screening exams. These are women 
who, without the B&C Program, would have not had the means to 
access screening services.
    Another important issue that I would like to highlight is 
that, in fact, we are focused on reaching those women who are 
rarely or never screened and women from racial and ethnic 
minority communities. CDC data show that 60 percent of all 
women screened in the B&C Program are racial and ethnic 
minorities, higher than the estimated 56 percent of all women 
who are eligible for the program and members of minority 
groups.
    I will stop there and be pleased to answer any questions 
that the chairman or other members of the committee would like 
to ask. Thank you very much.
    [The prepared statement of Ms. Henson follows:]

[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Chairman Waxman. Thank you very much. I appreciate your 
testimony.
    I want to ask you about the program's ability to reach its 
target population. What percentage of women eligible for breast 
and cervical cancer screenings does the program serve?
    Ms. Henson. Well, the States have done a wonderful job in 
terms of reaching women, but the reality is that we are able to 
reach about 15 percent of the need at this point in time.
    Chairman Waxman. How many women in total did the programs 
serve in 2006?
    Ms. Henson. That is about 600,000 women.
    Chairman Waxman. How many were served in 2007? Do you have 
an estimate of that?
    Ms. Henson. We have an estimate of that. We are actually 
forecasting about the same at this point, about 600,000 women.
    Obviously, the current funding level certainly can impact 
the number of women screened, but there are other factors that 
we have to take into account in terms of emerging new 
technology such as digital mammography, outreach challenges 
particularly in rural areas, that type of thing. But we are 
confident that we are able to keep the numbers fairly high in 
terms of screening women because of the extensive network of 
providers and infrastructure that we have in place.
    Chairman Waxman. Well, I don't think it is very high if you 
are only reaching 14 percent of the eligible women that would 
come in for these screenings.
    You did get a little bit more money, but even I would guess 
it is predictable if you don't have increasing funds to do the 
job, while there may be other factors, you are just not going 
to be able to reach more women.
    What are the other factors you say that are keeping you 
from increasing the number of women to be screened for breast 
and cervical cancers?
    Ms. Henson. Of course, we have spoken about the funding 
level, but I think the other factors are clearly we are seeing 
many changes in technology, for example, digital mammography 
which is going to cost more, the cost around diagnostic tests.
    Chairman Waxman. So, if it is increased costs, that really 
goes back to the amount of money that you are getting. If you 
are not getting increased money and the costs are increasing, 
you are not going to be able to serve a greater number of 
people.
    The program was authorized, I think, until 2012. Is the 
program receiving the full authorized amount for fiscal year 
2008?
    Ms. Henson. No, the program isn't. The authorization amount 
for fiscal year 2008 was $225 million. We are receiving $182 
million for the B&C Program at this point.
    Chairman Waxman. How many women do you estimate you would 
have been able to screen in 2008 if you had the full funding 
that your authorization provides?
    Ms. Henson. I think we would be able to probably reach 
740,000 women if we had the 225 available to us.
    Chairman Waxman. So, for $40 million or thereabouts, we 
could have reached 740,000 more women, maybe saved their lives.
    How many do you think you will screen, given the actual 
funding amount?
    Ms. Henson. I think at this point we are doing those 
estimates, but I think, given the funding amount, it is going 
to be in the area of about 600,000 women.
    Chairman Waxman. Well, I am pleased that CDC has been able 
to serve as many women as it does, but I am concerned that you 
won't be able to keep making much progress without more 
resources and if the expenses keep increasing, you may well go 
downhill rather than uphill in reaching what, on a bipartisan 
basis, Congress wanted you to be able to do. That is to provide 
the screening and for those that have this early detection to 
be able to get the medical care they need, if nowhere else, 
through the Medicaid program.
    Thank you for your testimony. We very much appreciate it.
    Ms. Henson. Thank you very much.
    Chairman Waxman. Mr. Davis.
    Mr. Davis of Virginia. Thank you.
    Let me ask, what does it cost for a test?
    Ms. Henson. What does it cost for a test? That is a very 
good question.
    For clinical services per women served, the number is about 
$248. Now, when we look at the entire program, that is to 
include the public health components of the program, the median 
cost per woman served is $550--$555, excuse me.
    Mr. Davis of Virginia. Per patient.
    Ms. Henson. Yes, per woman.
    Mr. Davis of Virginia. If you were to get a cervical cancer 
which has a very high incidence of mortality if it metastasizes 
or breast cancer, what are the costs of treatment for that once 
a cancer like that has metastasized?
    Ms. Henson. Let me make it very clear that this doesn't 
include data around treatment costs, and we are going to have 
to get back to you.
    Mr. Davis of Virginia. I am just asking you, the treatment 
costs are very high, are they not?
    Ms. Henson. They certainly are.
    Mr. Davis of Virginia. Can it run into the hundreds of 
thousands of dollars?
    Ms. Henson. It could, depending on the stage of the cancer 
and the kinds of needs that a woman would need.
    Mr. Davis of Virginia. Correct. So, obviously, if you can 
catch it early, you save the whole system. You save hundreds of 
thousands, in some cases, tens of thousands, whatever.
    Ms. Henson. Absolutely.
    Mr. Davis of Virginia. As well as the lives.
    Ms. Henson. Clearly, the program, and I didn't have an 
opportunity to say but we have been very good. The performance 
of the program is outstanding in terms of identifying early 
stage cancers both on the breast side and the cervical cancer 
side.
    Mr. Davis of Virginia. Really, the old saying, a stitch in 
time saves nine, this is just living proof of that.
    Ms. Henson. Absolutely, yes.
    Mr. Davis of Virginia. Now your written testimony notes 
that cervical cancer incidents and mortality rates are 
considerably higher among Hispanic and African American women 
than the general population. Is that correct?
    Ms. Henson. That is correct.
    Mr. Davis of Virginia. Now, are these differences 
attributable to screening levels or could it be attributable to 
diet or some other cultural factors that maybe we haven't 
factored in?
    Ms. Henson. I think there are a number of factors there and 
certainly awareness in terms of the need to get screened for 
cervical cancer. Cervical cancer is really a disease of older 
women. Clearly, women that haven't been in this country very 
long are unaware that they need to get screened. It is really, 
again, access to the medical care system.
    Mr. Davis of Virginia. So screening is really the major 
problem. If everybody got screened, then you could detect it 
much earlier and save them.
    Ms. Henson. That would certainly be our goal.
    Mr. Davis of Virginia. With those two populations, your 
penetration in terms of getting the word out and getting them 
screened is much lower than with other populations.
    Ms. Henson. Clearly, what we do need to have in place and 
what we have in place is very strong and effective outreach 
strategies. And so, for those populations that normally don't 
come in for routine medical care, you know we have to do a fair 
amount of outreach to reach them and get them into service, and 
so that is critical.
    Mr. Davis of Virginia. Now, if someone were in the country 
and were not here legally, for example.
    Ms. Henson. Excuse me?
    Mr. Davis of Virginia. If someone were here illegally, if 
they were undocumented and were afraid to come forward and they 
developed a cancer, then the costs are still very high. Are 
there any prohibitions on them getting treatment in a case like 
that or does that go State by State in terms of eligibility?
    Ms. Henson. Certainly, the eligibility around people in the 
country that are not here legally, those decisions are made by 
the States. OK. In terms of offering screening services, 
Medicaid does not allow us.
    Mr. Davis of Virginia. But let's just take this a step 
further. Let's say you worked here, that you weren't 
documented, that you entered illegally or maybe you came as a 
young kid and your parents entered illegally. You didn't have 
any say in it, but you came in.
    You developed this. You developed cancer because you 
couldn't come forward and get treatment or you weren't aware of 
it or were afraid to come forward or whatever, but then you 
developed it. Our hospitals would still have to take you when 
you present yourself at the emergency room stage. Isn't that 
correct?
    So the costs still get borne across it.
    There are no prohibitions on language component or anything 
else in terms of getting the word out, are there, in terms of 
advertising?
    Ms. Henson. No.
    Mr. Davis of Virginia. Are different States using different 
tactics to try to reach a minority?
    Ms. Henson. States use a whole variety of outreach 
strategies and tactics.
    Mr. Davis of Virginia. What has been the best model as you 
look at States?
    Ms. Henson. Well, I think particularly with racial and 
ethnic minority women and women that are hard to reach, the 
actual community health workers, particularly in Virginia, that 
has been a very, very nice model in terms of lay health 
workers.
    Clearly, getting into senior centers and getting into the 
community to have an opportunity to recruit women directly is 
very effective.
    Mr. Davis of Virginia. But is there any State that can be a 
model for this that you can see, that you look for to say we 
think they have done this right versus States that maybe 
haven't done it right?
    Ms. Henson. I think that certainly we do have models out 
there, and we certainly would be willing to provide that for 
the committee.
    Mr. Davis of Virginia. I think it would be helpful. I mean 
the whole idea of federalism is that these State and local 
governments are laboratories of democracy. They all try 
different things, and the ones that work can be replicated. The 
ones that don't, then you learn from their mistakes and you 
don't have to make them yourself.
    Thank you.
    Ms. Henson. Thank you very much.
    Mr. Cummings [presiding]. Thank you very much.
    Ms. Henson, does the CDC develop specific strategies at the 
national level in order to reach out to underserved groups?
    Ms. Henson. Certainly, the CDC is knowledgeable and works 
very closely with States in terms of developing education and 
outreach strategies to reach out to women that are hard to 
reach and racial and ethnic minorities. So that is a piece of 
work that we have done very closely in collaboration with 
States.
    Mr. Cummings. In my opening statement, I mentioned Dr. 
Sheppard at the Lombardi Center. Are you familiar with her 
work?
    Ms. Henson. No, sir, I am not.
    Mr. Cummings. All right. Well, apparently, they use a 
navigator type system where they get people, women who are 
survivors to work with other women.
    It seems to me. I mean I have seen that work and that kind 
of system work in various areas such as Healthy Start. When you 
have mothers who have gone through the pregnancy process to be 
able to talk to first-time women who are pregnant. There s a 
relationship that is established, and a lot of those people are 
from the very neighborhoods.
    I was just wondering had you all done any? Do you have any 
information on that?
    Ms. Henson. Sir, we certainly do have information on 
navigator programs, and we certainly can provide that to the 
committee. It is a very effective strategy in terms of helping 
women manage through our complicated healthcare delivery 
system.
    Mr. Cummings. A little earlier, the chairman, Mr. Waxman, 
asked you about if you had additional money, how many people we 
might be able to help.
    I take it that here in the United States there are women 
who are suffering and possibly dying because we don't put the 
resources to the problem in a sufficient amount. Is that right?
    Ms. Henson. That is correct.
    Mr. Cummings. If you had to estimate how many women come 
under the category of could be diagnosed and get treatment but 
because they don't will likely perish in a year, what would you 
estimate that figure to be, if you can?
    Ms. Henson. That is a figure that we need to get back to 
you. I think that one point I want to make here is that we have 
estimated that there are 4 million women that would be eligible 
for this program.
    Mr. Cummings. Can you say that again?
    Ms. Henson. We have estimated that there are 4 million 
women in this country that are potentially eligible for this 
program.
    Mr. Cummings. And how many are reaching?
    Ms. Henson. We are actually, as was said earlier, we are 
actually reaching about 15 percent of that need.
    Mr. Cummings. That is sad.
    Ms. Henson. Yes, it is.
    Mr. Cummings. One of the things that is very interesting in 
my district in Baltimore, when I visit senior centers and I 
have an opportunity to bring medical people to the town hall 
meetings, one of the complaints that I get from my seniors is 
that mammograms hurt. I am just telling you what they say. I 
don't know.
    But I mean is that something you all hear from women?
    Ms. Henson. Yes, certainly, we do hear that.
    Mr. Cummings. I can't hear you. I am sorry.
    Ms. Henson. I am sorry. Certainly, we have heard that from 
women. I mean they, women do have a variety of fears related to 
the screening process.
    Mr. Cummings. Have we looked at those fears and tried to 
address them?
    It seems like let's say the services are available, the 
screening is available and if they are not taking advantage of 
it, it seems like we would want to try to get to the bottom 
line to try to alleviate their fears or concerns.
    Ms. Henson. Certainly, we do that through our public 
education and our direct outreach efforts to address those 
fears so that women certainly are more likely to take advantage 
of breast and cervical cancer screenings. We try to deal with 
that barrier in an effective way.
    Mr. Cummings. Now, last but not least, let me ask you this. 
Existing law has a requirement that out of the 
nonadministrative funds, 60 percent has to go to direct 
clinical services. Is that right?
    Ms. Henson. That is correct.
    Mr. Cummings. I understand that the new reauthorization 
creates a limited waiver that will give some States flexibility 
on this ratio. What is the purpose of that waiver?
    Ms. Henson. The purpose of that waiver, first of all, is to 
help strengthen the other public health components of the 
program: professional education, public education, quality 
assurance, our tracking systems. But the other requirement is 
that, in fact, as we are doing that, that we maintain an 
expanded number of women to be screened.
    So we can't forego screening women, but we also need to be 
able to leverage other non-Federal dollars to ensure that women 
are getting the services.
    Mr. Cummings. Has the CDC informed the States of the 
option?
    Ms. Henson. Yes. Yes, sir.
    Mr. Cummings. How many States have shown an interest in 
applying for it?
    Ms. Henson. We have about four States that have shown an 
interest at this point in time.
    Mr. Cummings. When will these waivers come into effect?
    Ms. Henson. June 30th of this year.
    Mr. Cummings. All right. Thank you very much.
    Mr. Shays.
    Mr. Shays. Thank you, Mr. Chairman, and thank you to our 
witnesses. To the second panel, I am the ranking member of a 
subcommittee that will be meeting, and I will probably miss a 
good part of that presentation.
    We are dealing with an issue of flat funded over a number 
of years, and some States do a better job than other States is 
what I am hearing from the testimony.
    Is there any documentation that shows that the States that 
don't do as good a job, that there are more cases of cancer 
that isn't detected soon enough and therefore dealt with and 
that you have the resulting higher deaths or are we doing it 
basically intuitive but not documented by statistics?
    Ms. Henson. Sir, we would definitely have to get back to 
you on that particular issue.
    But I would like to add that CDC has a very, very nice 
performance-based funding system in place, and we do a lot of 
monitoring in terms of the ability of States to spend their 
dollars, the ability of the State to make realistic screening 
projections and to really monitor the quality of services.
    Mr. Shays. Right. I am looking at this room and what I like 
about this hearing is there is nothing that comes between a 
Republican and Democrat on this issue, and it is a healthy 
thing to see. I mean I look at my colleagues on the other side, 
and they are champions on this issue, and I know that 
Republicans as well feel this is a very important effort.
    But it is important, I think, for the things that we 
support most, to continue to continue to document. For 
instance, wouldn't it be stunning if you found out that in the 
States that didn't do as good a job, that the rates were even 
much higher and that you would have real life, not just 
anecdotal, but story after story of if only this person had 
known sooner and they would have been more likely to know 
sooner in another State that provided more?
    I think that would be tremendously helpful.
    Let me ask you about the cost, film versus digital.
    Ms. Henson. Cost.
    Mr. Shays. First, what is the cost of the program per test? 
I have no sense of the cost per test.
    Ms. Henson. Let me give you the cost in terms of providing 
direct clinical services per woman.
    Mr. Shays. No. Just a test, what does the test cost?
    Ms. Henson. OK, $79.
    Mr. Shays. $79.
    Ms. Henson. $79 and $120 for digital.
    Mr. Shays. OK, but the digital, I make an assumption, is 
far more accurate because it is a more clarified picture. Is 
that true?
    I mean it has to be. Otherwise, why would we want to go to 
digital? What would be the advantage of digital over film?
    Ms. Henson. I think that clearly there are data to suggest 
that there are benefits to digital mammography, that it 
certainly would be more accurate in terms of women that have 
dense breasts.
    Mr. Shays. Then let me ask you, is there any other type of 
test that is coming in that, rather than being more expensive, 
will be less expensive?
    I mean if your testimony touched on it, I am sorry. I 
didn't catch it.
    Ms. Henson. No, sir, not another test that I am aware of.
    Mr. Shays. OK, thank you.
    Thank you very much, Madam Chairwoman.
    Mrs. Maloney [presiding]. Well, I want to thank my 
colleague for really supporting this initiative on women's 
health as you have so many others, and it is good to have 
something we both agree on, although we agree on a lot of 
things together, on 9/11 and so forth.
    I would like to thank the witnesses and ask you, as you 
have noted, you are reaching fewer than 15 percent of the 
eligible women. When a clinic runs out of money, what happens 
to a woman seeking a mammogram?
    Ms. Henson. Well, certainly, that is a challenge for the 
program, and you are going to hear from the other witness 
around that. But I think that States really do try to get the 
women connected to a service, so they can receive mammography 
services or cervical cancer screening services, but it is a 
challenge that the program faces.
    Mrs. Maloney. I would agree with my colleague that getting 
and keeping good data will help build your case for the needed 
funds to go forward.
    Since I have been in Congress, really, we have doubled, 
more than doubled the amount of money going into mammograms and 
cervical cancers and other cancers for women.
    I recall when I came, one in seven women died of breast 
cancer. What is the number now? How many women die of breast 
cancer a year now?
    That was the number that was always used, one in seven. It 
could be your sister, your mother.
    Ms. Henson. OK. It is one in seven women are diagnosed, and 
we have at this point, that we have about 40,000 women per year 
that die of breast cancer.
    Mrs. Maloney. Excuse me. He was talking to me. You say one 
in seven is diagnosed and how many?
    Ms. Henson. We have had about 40,000 women that actually 
die from breast cancer.
    Mrs. Maloney. 40,000 a year, that is still astronomical. 
One in seven is diagnosed and 40,000 die. Oh, my goodness.
    What about the cervical cancer? What is the number on that?
    Ms. Henson. In this country, we have, unfortunately, about 
4,000 women in this country that are dying of invasive cervical 
cancer.
    Mrs. Maloney. 4,000?
    Ms. Henson. Yes.
    Mrs. Maloney. But you said 40,000 died of breast cancer.
    Ms. Henson. Yes.
    Mrs. Maloney. So many, many more die of breast cancer than 
cervical cancer.
    Ms. Henson. Yes, and we have done a very nice job in this 
country in terms of getting cervical cancer services out to 
women. We have really made some very nice progress, but it is 
very hard.
    Mrs. Maloney. Is that because the pap smear as a screening 
device is more effective than the mammograms?
    We have tremendous outreach on mammograms too now through 
the Medicaid program, Medicare and just advertisements. I know 
that in my home State there are literally billboards up, 
telling people to go get their mammograms. Why do you think 
that so many more die from breast cancer than cervical cancer? 
Do you think it is the screening?
    What do you think is the reason?
    Ms. Henson. I don't think it is the screening tool. I think 
it is that women, clearly for many years, during their 
adolescent years, their younger years, certainly got accustomed 
to going for pap testing and screening, and I think that 
mammography is still a screening tool that women are aware of 
but at times fear.
    I don't think there is a difference in terms of the 
screening tools, but I think that there is an issue in terms of 
attitude and----
    Mrs. Maloney. Use.
    Ms. Henson. Use, yes.
    Mrs. Maloney. Well, the chairman is very committed to 
helping this program. So could I ask you to supply for the 
record, if you don't have it with you today, your professional 
judgment of how much funding would be required to meet the 
needs of all eligible women?
    Ms. Henson. We certainly will provide that to you.
    Mrs. Maloney. I would like to talk a little bit about the 
tools and technology.
    Both the mammogram and the pap test have been around for 
literally decades, and they are literally the primary screening 
tools used because they are both effective in detecting signs 
of cancer. But the law creating the program, which we are 
discussing today, stated that if newer technologies are 
developed and recommended, they can be covered as well.
    Can you please explain how such coverage decisions are made 
and can you tell me about the two tests that we are reading 
about a lot, the digital mammograms and the HPV test, and does 
the screening program now cover these new technologies?
    Ms. Henson. Certainly. When the program is faced with this 
type of decision, what we do is we usually bring together 
experts to make those decisions, and basically they do look at 
the effectiveness of the screening tool as well as looking at 
the priorities of the program.
    Currently, the program is providing a limited amount of 
resources for HPV as well as for digital mammography. We 
currently reimburse at the Medicare rate for these types of 
procedures, and that has become an issue for the States because 
the rates are low.
    Mrs. Maloney. Thank you.
    Congresswoman McCollum.
    Ms. McCollum. Thank you.
    I would like to go back. When you were asked the cost of 
the screening, you came up with $500. Is that what you said for 
the cost of screening?
    Ms. Henson. $555 is the median cost per woman screened.
    Ms. McCollum. I would like you to break that down because I 
served on the Health and Human Services Committee in Minnesota 
and screening per woman, when we talked about it on the House 
floor and recently, it has been screening at $88 per woman, 
then maybe $85 to recruit women.
    Are you just putting that all together for you $500?
    Ms. Henson. Basically, what that number represents is 
clinical services as well as the public health components of 
the program. So that is why there is a difference in that 
particular number.
    Ms. McCollum. Do you break that out by State?
    Ms. Henson. That is something that we are looking at right 
now. We have looked at nine States to get a handle of the cost, 
and we have a phase two initiative to look at more States.
    Ms. McCollum. Well, I think best practices should really be 
moving forward because there are discussions in my State of the 
State actually cutting back on some of its costs.
    Just listen to the State of the Union. If I advocated for a 
program now in Minnesota maybe to reach Somali women, it would 
be considered something terrible. It would be called an earmark 
to develop a best practice or something that States could use 
as a laboratory to move forward, to help other women around 
this country live healthy, productive lives.
    Could you maybe speak a little bit about what you are doing 
with your efforts for Native American women?
    I say this in particular because although States are 
laboratories, the funding goes toward States. Native American 
women are part of nations where the Federal Government has 
relationships with. So can you speak to what your plans are to 
increase this issue of Native American women not being screened 
because after all that then becomes a nation to nation issue?
    Can you also address if the CDC monitors and starts 
becoming concerned or alarmed when States start cutting back on 
their participation in these programs? Because if the State 
cuts back, then the Federal match is less. So then that is good 
maybe for another State or maybe that is good for someone who 
is looking to cut the budget in these areas, which I don't 
think is a prudent thing to do.
    Could you maybe speak to that, please?
    Ms. Henson. Sure. Well, let me begin with your question 
about the American Indian-Native American population. This 
program is one of the first programs at CDC that actually 
funded tribes directly along with a clear direction to States 
that they need to reach out to American Indian-Alaska Native 
populations. And so, we have been doing this work for many, 
many years.
    Another part of this strategy is that----
    Ms. McCollum. Excuse me. What is your success rate then if 
you have been doing it for so many years?
    When you started out, you were at zero. Where are you now?
    Ms. Henson. Is there in terms of screening?
    Ms. McCollum. Well, the first year, you had a baseline of 
how many women you screened. The second year, you had how many? 
I mean what is our success rate if you have been doing this for 
so many years?
    Ms. Henson. We certainly can get that data back to you. 
Actually, what I will do is get the actual numbers back to you, 
but we are reaching, at this point, about 3 percent of the 
women that are Alaska Native-American Indian.
    Ms. McCollum. Three percent.
    Ms. Henson. I actually can give you actual screening 
numbers if you'd like to have them.
    Chairman Waxman [presiding]. Could you speak into the mic?
    Ms. McCollum. I had asked another question about States 
that cut back. I was waiting for the answer.
    Ms. Henson. OK. In terms of--can you please repeat your 
second question? That would be helpful.
    Ms. McCollum. There are Federal dollars that go into the 
screening program. The States often match those Federal 
dollars, yielding more opportunities for women to be screened. 
Does the CDC become concerned?
    Do they express through letters or questions why a State 
might be looking at cutting back in doing some of the outreach 
for women because when some of the dollars are pooled together, 
the dollars much more effective and much more powerful if 
someone is using best practices?
    If a State pulls back, fewer women are going to be reached. 
That means those Federal dollars going into the program aren't 
going to be as effective as they could be.
    Ms. Henson. Certainly, the CDC expresses their concern. We 
clearly don't have control over the State dollars, but we work 
with the program to see what we can do to reach the women that, 
in fact, won't be screened because of the cutback in terms of 
State dollars or other sources of resources that are coming in 
for screening. So we do work with them.
    We do provide a lot of technical assistance. We have a real 
clear sense in terms of how many women would not be screened if 
the State dollars or other sources went away from the screening 
program. We hold the States very accountable for the match 
requirement in the law.
    Chairman Waxman. Thank you, Ms. McCollum.
    Mr. Welch.
    Mr. Welch. Thank you and thank you for your good work.
    In addition to funding, always a challenge, what are the 
other elements of making the screening test available to women?
    Ms. Henson. Well, I think that, clearly, the other parts of 
the program that are critical are certainly the public health 
components elements.
    We would want to ensure that we have very good tracking 
systems, we have very good case management, that we have strong 
public education and outreach programs on the ground, and 
clearly very strong professional education for the providers 
that are seeing these women. So those are all.
    Mr. Welch. I don't actually know what that means.
    Let's say you are a low income woman living in the inner 
city, how do you find out about it? What are the impediments to 
access?
    What are the impediments for the providers to making the 
service available when money is not the issue but some of these 
other practical obstacles are?
    Ms. Henson. Certainly. Well, clearly, there is the public 
education through a radio spot, through a television spot, 
recruitment in senior centers or other community-based 
organizations where we can talk to the women about the 
availability of services through this program.
    If a woman says to us she doesn't have transportation, we 
assist with that. If she clearly needs some help in terms of 
getting to the screening site, she needs someone with her, we 
help her do that as well. And, clearly, if she is diagnosed 
with a cancer, we provide case management services.
    Mr. Welch. I think in response to Congresswoman McCollum's 
question or one of them, you said the cost of each screening 
was $555. Does that cost figure include these other support 
elements that go from advising the availability of the service 
to, in some cases, you mentioned providing transportation to 
the actual test itself?
    Ms. Henson. Yes, sir. It clearly does.
    Mr. Welch. Are many of the women who benefit from the 
screening test also women without Medicaid or Medicare or other 
form of health insurance?
    Ms. Henson. Certainly, we are talking about a population of 
women that are uninsured or underinsured. So they have no real 
form of health insurance.
    Mr. Welch. When you say uninsured, they are not even 
Medicaid or Medicare covered?
    Ms. Henson. Correct.
    Mr. Welch. So what then happens to those folks who have a 
need for further medical care because it is a positive test?
    Ms. Henson. Certainly. Well, through the screening program, 
if a woman has a positive test, then we will provide diagnostic 
services.
    Mr. Welch. Right.
    Ms. Henson. And then if she is diagnosed with cancer, we 
are able to refer her to Medicaid for treatment through the 
Medicaid option that was approved by Congress.
    Mr. Welch. Are there any impediments to that women then 
being made immediately eligible for Medicaid and getting the 
medical treatment for her cancer that is required?
    Ms. Henson. Excuse me. I didn't hear.
    Mr. Welch. Is there any impediments to that person being 
made eligible for Medicaid and then immediately getting the 
care or getting the care in a timely way for the cancer that 
has been diagnosed?
    Ms. Henson. Our finding is that, in fact, the whole process 
is pretty simple in that we have found that many of our women 
who have been diagnosed with a cancer and that initiate 
treatment, that time period is actually very, very short. So 
that has been very, very helpful to have that Medicaid option 
for these women.
    Mr. Welch. Thus, the better survival rates from the 
treatment and the early diagnosis.
    Ms. Henson. Exactly. Exactly.
    Mr. Welch. Thank you very much.
    I yield the balance of my time.
    Ms. Henson. Thank you.
    Chairman Waxman. Thank you, Mr. Welch.
    Mr. Higgins.
    Mr. Higgins. Thank you, Mr. Chairman, and thank you for 
holding this important hearing.
    Thank you, presenters here. Your message of prevention and 
early detection is urgent and timely.
    My understanding is that less than 10 percent of cancer 
deaths are a result of the original tumor. It is when cancer 
spreads. It is when cancer metastasizes that cancer becomes 
deadly.
    Over the years, the Nation has invested a lot of money in 
cancer research through the National Cancer Institute. You know 
30 years ago, if you were diagnosed with cancer, less than 50 
percent of those lived beyond 5 years of their diagnosis. 
Today, it is 65 percent for adults, 80 percent for kids. More 
people are living with cancer than are dying from cancer.
    Despite this, it seems as though the Federal Government is 
pulling back on its investment into early detection, prevention 
programs and funding promising new research in therapies which 
become the basis for tomorrow's standard treatments.
    I think the most important point here is that to a nation, 
to our Nation, it is much more expensive to treat advanced 
cancer than it is to treat early stage cancer. You, in your 
testimony, point that out.
    My first year here, there were a bunch of cancer advocates 
from the entire Nation, who converged on Washington to promote 
what is referred to as the 2015 Campaign. I didn't know 
anything about it. I inquired about it. In the 2015 Campaign, 
the goal was to eliminate all human suffering and death due to 
cancer by the year 2015.
    Upon further inquiry, I knew that there was also some 
controversy within the cancer community about whether or not 
that goal is attainable. Well, that is the wrong focus. So long 
as you are making progress toward the goal, that is what is 
most important.
    But over the past 5 years, Congress cut cancer funding to 
the National Cancer Institute by about $250 million.
    The goal or progress toward the goal of eliminating all 
human suffering and death due to cancer, eradication of cancer 
in our lifetime, should not just be the National Cancer 
Institute's goal or those that advocate along with them. It 
should be the Nation's goal.
    But Congress has to insist on a massive investment behind 
cancer prevention, early detection and promoting new therapies 
that give great promise to effectiveness moving forward. As I 
mentioned, it is an investment. It is not only an economic 
issue. It is an important healthcare issue as well.
    Any thoughts on that?
    Ms. Henson. Certainly, the concerns that you have raised 
and the priorities that you have raised are, from our 
perspective, very much on target.
    I think that the National Breast and Cervical Cancer Early 
Detection Program has done a fine job with the types of 
resources that we have to reach underserved women. Clearly, to 
reach all women, we are going to have to make a stronger 
financial investment in this particular program.
    But, clearly, what we have seen is we have strong 
accomplishments in terms of reaching these very hard to reach 
women, and we have really seen since the inception of the 
program that we have been very successful in terms of detecting 
early stage cancers.
    Mr. Higgins. What happened to the 2015 Campaign?
    You don't hear much about it anymore. Is it still the goal? 
Is it still established? What happened?
    Ms. Henson. Well, certainly, we can get back with you on 
that, but clearly 2015 continues to be a very important goal 
and very, very strong priorities. But we can get back to you in 
terms of what is actually happening.
    Mr. Higgins. One word of advice, and I haven't been here 
all that long, but that first year all these cancer advocates 
asked Members of Congress to sign their petition, their 
resolution, a non-binding expression to promote increased 
funding to achieve the 2015 goal. In my response, I signed it 
respectfully, but the cancer community is letting Congress off 
too easily.
    Yes. A non-binding recommendation means nothing.
    I would encourage because as what is stated here, that 
everybody is touched by cancer, directly and indirectly and 
likely both. I think it is one of these issues that, as others 
have mentioned, doesn't have a partisan label to it, and I 
think that there is a consensus that if our Nation does not 
make that investment, we can't expect that anybody else will.
    Ms. Henson. Well, thank you very much for your support.
    Mr. Higgins. Yes. I yield back.
    Ms. Henson. I much appreciate it.
    Chairman Waxman. Thank you very much, Mr. Higgins.
    Mr. Van Hollen.
    Mr. Van Hollen. Thank you, Mr. Chairman. Thank you for 
holding this hearing and thank you for your testimony.
    As my colleagues have said, obviously, we need to commit, I 
think, a lot more national resources to this effort to make 
sure that we do get the screening programs and get as many 
people as we possibly can to take advantage of those programs 
and then be sure that we are providing the followup treatment 
for those who are detected with breast cancer, cervical cancer 
and other cancers.
    I just want to followup on one of the questions by my 
colleague, Congresswoman Maloney on the new technologies 
because in both areas there are new technologies. I wanted to 
ask you with respect to the HPV DNA test that has been approved 
by the FDA, compared to the pap test, is the HPV DNA test 
better able to detect cervical cancer?
    Ms. Henson. In terms of cervical cancer, the recommendation 
is that we continue to do pap tests in conjunction with the HPV 
testing. Actually, what is happening now in the program is that 
we don't offer it routinely, but we offer the HPV test for 
women that show up with certain abnormal findings at this point 
in time, but it is offered in conjunction with the pap test.
    Mr. Van Hollen. I guess my question is do the findings 
suggest that the HPV test in some instances is better able to 
detect cervical cancer?
    In other words, could a woman come and take a pap smear and 
it show up as negative but the HPV DNA test show a positive 
finding?
    Ms. Henson. Sir, I would like to get back to you on that 
particular question. I don't have the information readily 
available to me.
    Mr. Van Hollen. OK. I mean there are two major issues here, 
obviously. One is we want to cover, obviously, more women in 
screening and the other is we want to be using the most up to 
date, the test that is best able to make that detection.
    So I would be interested whether the findings suggest that 
someone who may test negative on a pap smear, that same person, 
if you use the DNA test, HPV DNA test would be found positive. 
Then the question is if that is the case, shouldn't we consider 
making that part of the original screening?
    Could you talk a little bit about the state of the 
recommendations from CDC and other U.S. Government health 
agencies with respect to the vaccine for cervical cancer?
    Ms. Henson. The vaccine, well, certainly. Currently, the 
HPV vaccine is really targeted for girls and women, age 9 to 26 
years old, and this is really not a population that is served 
by the National Breast and Cervical Cancer Early Detection 
Program.
    We certainly would be pleased to provide you with the 
actual guidelines that particular program is managed. The 
science is managed in a different center at CDC, but clearly 
the focus is on girls and women that are much younger than the 
women that are actually through the B&C Program.
    Mr. Van Hollen. Right. I guess what I am trying to 
understand is what the current recommendations are from the CDC 
or others, from the U.S. Surgeon General if you know, with 
respect to recommending whether or not females between these 
ages should get the vaccine or not? Do you know what the 
current state is?
    Ms. Henson. Basically, the recommendation is at this point 
that women regularly receive cervical cancer screening through 
the pap test; that HPV vaccine for girls and women, age 9 to 
26, is supported; that HPV vaccine for women, age 27 or older, 
is not supported. All women receiving the HPV vaccine should 
continue to receive a pap test according to the established 
screening recommendations.
    We can get that to you in writing if that would be helpful.
    Mr. Van Hollen. That would be helpful. Thank you.
    Thank you, Mr. Chairman.
    Ms. Henson. Thank you.
    Chairman Waxman. Thank you very much, Mr. Van Hollen.
    Ms. Henson and Ms. Mariani, thank you for being here and 
answering our questions and making your presentation. It has 
been very helpful to us. Thank you.
    Ms. Henson. Thank you very much for this opportunity.
    Chairman Waxman. We are going to now hear from our second 
panel, but before I call on them I want to ask unanimous 
consent that the record be open for additional testimony that 
may be submitted to us for the record.
    Our second panel will provide a broad range of information 
and perspectives on the National Breast and Cervical Cancer 
Early Detection Program.
    Gail Carey is a breast cancer survivor from Long Island. 
She experienced firsthand the benefits of the screening program 
through the Healthy Women's Partnership in New York.
    Dr. Otis Brawley is the medical director for the American 
Cancer Society where he is charged with promoting the goals of 
cancer prevention, early detection and quality treatment 
through cancer research and education. As an acknowledged 
global leader in the field of health disparities research, Dr. 
Brawley is a key leader in the Society's work to eliminate 
disparities in access to quality cancer care.
    Shelley Fuld Nasso is the director of public policy for the 
Susan G. Komen for the Cure Advocacy Alliance and facilitates 
Komen for the Cure policy and legislative efforts. She also 
oversees the Komen Community Challenge, a series of events 
designed to make breast cancer a national priority and to help 
close the gap in access to care.
    Pama Joyner is the program director for the Washington 
Breast and Cervical Health Program. She served as the 2006-2007 
Chair of the National Association of Chronic Disease Directors 
Breast and Cervical Cancer Council.
    Finally, Dr. Thomas Hoerger is the senior fellow in health 
economics for RTI International and the director of RTI's 
Health Economics and Financing Program. He is also the director 
of the RTI-UNC Center for Excellence in Health Promotion 
Economics and has led numerous research projects for the CDC 
and CMS.
    We are pleased to welcome all of you to our hearing today.
    It is the practice of this committee to ask that all 
witnesses that testify do so under oath. So, if you would 
please rise and raise your right hands.
    [Witnesses sworn.]
    Chairman Waxman. The record will indicate that each of the 
witnesses answered in the affirmative.
    Your prepared statements will be made part of the record in 
full.
    We would like to ask each of you to limit your oral 
presentation to 5 minutes, and we do have a timer. Right now, 
it is red, indicating there is time, but we will start off with 
green. It will turn to yellow when there is 1 minute left and 
then will turn red, indicating the time is expired.
    Ms. Carey, why don't we start with you? There is a button 
on the base of the mic that will actually turn it on and be 
sure to pull it close enough so that it is picked up.
    We are delighted you are here.

  STATEMENTS OF GAIL CAREY, RECIPIENT OF BREAST AND CERVICAL 
CANCER EARLY DETECTION PROGRAM BENEFITS AND VOLUNTEER, AMERICAN 
CANCER SOCIETY; OTIS BRAWLEY, MEDICAL DIRECTOR, AMERICAN CANCER 
SOCIETY; SHELLEY FULD NASSO, DIRECTOR, PUBLIC POLICY, SUSAN G. 
   KOMEN FOR THE CURE ADVOCACY ALLIANCE; PAMA JOYNER, PH.D., 
DIRECTOR, BREAST AND CERVICAL HEALTH PROGRAM, WASHINGTON STATE 
  DEPARTMENT OF HEALTH; AND THOMAS HOERGER, DIRECTOR, RTI-UNC 
  CENTER FOR EXCELLENCE IN HEALTH PROMOTION ECONOMICS AND RTI 
             HEALTH ECONOMICS AND FINANCING PROGRAM

                    STATEMENT OF GAIL CAREY

    Ms. Carey. I am here to testify because I was fortunate to 
be a recipient of this network. When I was diagnosed with 
breast cancer, I also had no insurance. I know in this world, 
it is inconceivable.
    From the time when I was a little kid, my mom had emphysema 
and she was forced go to on Medicaid, and we hated it. As 
little kids, we hated it because right after my mom got sick, 
my dad lost his job at Republic Aviation. Financially, they 
split up, and we were stuck on Medicaid for many years.
    When I was 18, I went out on my own, got my own job. With 
my first job, I had insurance, and I never looked back. I 
always had insurance every single year, no matter what job I 
had.
    When I got married, we had insurance. When I had my kids, 
we had insurance. When my husband and I also split up, still 
had a great job, still had insurance.
    Ironically, at one point, I was working for a medical 
facility. It was a panel of neurologists, and a young man came 
in. He was an immigrant, and he had been having seizures, and 
he had no insurance. The doctor was very reluctant to work with 
this child and sent him to the hospital across the way which 
was State-sponsored.
    At that point, I said, you know what? I don't want to work 
for this doctor anymore.
    I entered into a different world, and I worked for a trade 
show company. I worked for a trade show company doing air 
traffic control and whatnot. Again, always had insurance. It 
was always overlapping.
    Unfortunately, I was working for the trade show company 
when the jets hit the World Trade Center and we all know what 
happened to the country, let alone trade shows. Everything just 
shut down. Everything immediately shut down. That was in 
September.
    By March, our boss was paying us out of his own pocket. We 
knew he was just holding us on.
    When I lost my job, of course, it was devastating because I 
also lost my insurance. Couldn't afford the Cobra because I 
didn't have a job. I had two kids. I had no husband. I was 
paying for my house. As a mom, most women know that your 
priority is your children and your house and keeping a house 
over their heads.
    So I was going crazy for a couple of weeks, writing out my 
resumes. You know resumes that I hadn't had to prepare for many 
years, and at that time, in the interim, I found. I was taking 
a shower, and I felt what I perceived to be a lump.
    Now I also have to preface this by saying that I also 
worked for a medical facility for some time in mammography. I 
knew exactly what cancer was. I had seen it a thousand times 
because I worked in the records.
    I had seen dense breasts. I had seen young breasts. You 
know. I knew exactly about calcifications and carcinomas. I 
knew exactly what it was.
    So when I saw it, of course, I panicked. But I thought, 
well, we have a history of cysts. Maybe it is just a cyst.
    I scrambled to get a job. I worked little jobs, and then I 
finally found one job where he suggested after 3 months that I 
would get insurance.
    Now I got laid off in April, discovered the cyst or what 
came to be my cancer a couple of weeks later. I started this 
job in July. So here I am waiting like 2 months to get this job 
that promised me medical benefits.
    It is kind of like I took a pay cut just to get this job 
because it promised medical benefits. He said I would get them 
in 3 months.
    Now I already knew I had a problem, but I thought to 
myself, OK, so I will gamble here. You know. I always had 
control over my life. This was the first time I didn't. So let 
me do this.
    So I went from July to October and come October, I went to 
this boss and I said to him. I said, OK, I have put in my 3 
months. You know I would like to get those medical benefits 
going because I have a problem I think that needs to be 
addressed.
    I am sure he was aware of it because I had spoken to my 
manager about it. His answer to that was to call me into his 
office at about 10 minutes to 9, look at his watch and tell me 
I had 10 minutes to clean out my desk because I was fired.
    So, here I was, 3 months later, still no insurance, no job, 
no prospects, still pushing my kids out of the hole that I dug 
them out of, and I realized that I was going to die. There, I 
had no choice.
    I kind of walked out with dignity, and I just waved to him 
and said bye-bye. I got to my car and broke down and cried.
    So I went home and I pooled all my resources, and I figured 
out everything I could do. There was no way I was going to go 
to a doctor. I knew from the neurologists that they frown on 
people that don't have money, let alone no insurance. So I was 
certainly not going to go to a doctor for a screening for what 
I already knew to be cancer. I already knew it.
    So I pooled all my money, pooled it all together, my tax 
money and what-not, and I went out and I bought a little, tiny 
used car for my daughter. She was 18 at the time, and I said to 
myself, well, I am going to die. She is not going to be saddled 
with a car payment.
    That was my mind set. I was just going to make sure. I was 
going to set up my life. A couple of weeks later, my 
girlfriend, Kim, who worked with me in the medical facility in 
mammography came over and says to me, I haven't seen you for a 
while. What is going on? What is happening?
    That is when I broke down and cried and told her, Kim, I 
think I have a problem. And she goes, what is wrong? And I 
hadn't seen her in months, and she goes the very next day. It 
was October 31st, Halloween, set me up for a mammography. She 
is a certified mammotech.
    We both looked at the films. We both nearly threw up 
because we both knew it was. Not only was it a carcinoma, which 
is a lump, but it was already traveling to my lymph nodes at a 
very rapid rate. I was in big trouble. I was in big trouble. It 
was like stage three cancer.
    She set me up immediately for a sonogram. Again, because I 
worked for this particular medical center, they were extending 
a courtesy. Normally, that particularly mammography would have 
cost me $200 which I did not have at the time. They told me 
that I could pay it off eventually.
    They set me up with a sonogram which probably was going to 
cost about $1,000. Then I was like, Kim, I can't do this. It 
started with tech, biopsy, sonography. She said, we will do 
this. They did the biopsy. Of course, the lab tests came back 
positive, and I was just sick to death.
    I went home and I told the girls. I said, OK, girls, 
listen. I think we are in trouble. Katie said, well, what is 
the matter? She was my 18 year old. She comes in from Halloween 
trick-or-treating, and I said, I think we are in trouble.
    She goes, what is the matter? I said, I think I might be 
sick. I might have cancer. She goes, how much is it going to 
cost? Usually, we joke about if something is too expensive, we 
say it is going to cost $100. I said, well, it is going to cost 
more than $100.
    The next day, Katie got on a bus after school and went to 
the mall to get a job because she was going to help me pay for 
this. Actually, it didn't have to happen that way because Kim 
went to the hospital where she worked, and she says there is 
this new program. She said, Gail, you are not going to believe 
this because New York State only just instituted it this month, 
this year. It is brand new.
    It's the--we couldn't even. We didn't even get the name 
right. It was Woman's Healthy Partnership. We didn't even know 
what it was. They didn't even have forms. They have no cards. 
That had a brochure that described. It was a letter of 
introduction that described what this program was.
    She goes, take this to the doctor. They set me up with a 
surgeon. She gave me the name of this wonderful women in the 
American Cancer Society in Hyde Park. Her name was Maureen 
Massellaro. She was my patient navigator. The women had wings, 
seriously. You look at her, and she was just an angel because 
she set me up with the surgeon and I called up the surgeon.
    I went into the office. They asked me, do you have 
insurance? Do you have your insurance card? I wanted to run out 
of there. And I said, no, all I have is this letter, and I 
handed the letter. She goes, oh, OK, and she takes it. And I 
was like that's it? This letter of introduction? That was it.
    Chairman Waxman. You were being covered by the program.
    Ms. Carey. It was covered by this program.
    Chairman Waxman. By Medicaid.
    Ms. Carey. It was unbelievable. They took the letter, no 
problem. I spoke to the doctor. I spoke to the Secretary.
    Chairman Waxman. But your Senator had a large part in 
adopting in the Congress.
    Ms. Carey. I was absolutely terrified with this disease. I 
think I was more terrified because I couldn't pay for it. I was 
absolutely humiliated that all I had was a letter. I thought 
they were going to laugh me right out of that office.
    I was accepted immediately. They were so dignified. They 
were so encouraging. They were so sympathetic, and they 
absolutely said, no question, we will take care of this.
    Chairman Waxman. Well, thank you very much, Ms. Carey. You 
have given us a good example of how this program has succeeded.
    Ms. Carey. Extraordinary.
    Chairman Waxman. We want more people to be able to have the 
wings of angels come and fan them and help them as well.
    Ms. Carey. Amazing.
    Chairman Waxman. Thank you.
    Ms. Carey. Thank you.
    Chairman Waxman. Thank you very much for being here.
    [The prepared statement of Ms. Carey follows:]

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    Chairman Waxman. Dr. Brawley.

                 STATEMENT OF DR. OTIS BRAWLEY

    Dr. Brawley. Mr. Chairman and distinguished members of the 
committee, I am Otis Brawley. I am a medical doctor. I am a 
medical oncologist and epidemiologist, and I serve as chief 
medical officer of the American Cancer Society and, in that 
capacity, represent the 3 million volunteers of the American 
Cancer Society.
    As a medical oncologist and epidemiologist, I treat and 
study outcomes. I should also tell you that I have served on 
the Advisory Committee to the CDC Breast and Cervical Cancer 
Program. I have also directed a cancer center which did 
participate and still does participate in the Breast and 
Cervical Cancer Screening Program from the CDC.
    In that program, we have leveraged money from the Komen 
Foundation, the Avon Foundation, the American Cancer Society 
and the State of Georgia for education and outreach, and it is 
very important that we emphasize that education is a very big 
part of this program, a very necessary part of this program in 
addition to providing medical care.
    I am very proud that over the 6-years that I was director 
of the cancer center, with CDC funding and funding from our 
partners, we were actually able to create a stage shift in a 
large county hospital in Georgia where we halved the number of 
advanced breast cancers diagnosed on an annual basis and 
doubled the number of early stage breast cancers.
    Chairman Waxman, I wrote at this point I was going to say 
that I can't say it better than you said in your opening 
statement. I will amend that to say I can't say it better than 
you in your opening statement and Ms. Carey in her statement.
    It is my belief that the CDC is to be congratulated but 
that the CDC has been tremendously handcuffed by the lack of 
funds. Fifteen percent of those who should be getting these 
services are getting these services. These are people of all 
races and, in many respects, race does not matter. Regardless 
of race, all people, all women over the age 40 ought to be 
getting these lifesaving interventions.
    Indeed, for mammography and breast cancer screening with 
clinical breast exam, it has been document that it can decrease 
the death rate by 25 percent.
    The fruits of research from the 1970's, 1980's and 1990's 
are not being enjoyed by a substantial number of individuals. 
These are women who are dying. They are White. They are Black. 
They are Asian. They are Native American. They are Hispanic. 
They are of all races and all ethnicities, and they actually 
have in common the fact that they are poor or people who do not 
have resources.
    As an epidemiologist, I would conservatively estimate the 
number of deaths per year that could be avoided at being 
somewhere in the neighborhood of 2,000 to 3,000; 2,000 to 3,000 
human lives that could be saved if we were to expand this 
program.
    Now, since I am an epidemiologist, I will answer a couple 
of the questions, if you don't mind, that several of the 
Congressmen asked earlier.
    It is about one in seven or one in eight women who will be 
diagnosed with breast cancer in their lifetime. Among women who 
get the screenings that they should be getting, it is about 3 
percent of all women who will ultimately die of breast cancer.
    Among women who do not get the screenings, it is going to 
be over 4 percent. That 25 percent decrease in death rate is a 
4 percent lifetime rate going down to a 3 percent lifetime 
rate.
    There were questions about digital mammography versus 
conventional mammography. Right now, we think of both of them 
as being equal in terms of their diagnostic abilities.
    However, digital mammography allows for easier storage and 
increased computerization, ultimately in the next several 
years, will allow for computerized abilities to read a digital 
mammogram to assist the radiologist and perhaps create a 
mammogram of higher quality and more likely to pick up the 
mass. We are virtually on the verge of that right now.
    Also, there were questions about HPV testing. Someone who 
has a positive HPV test does not necessarily have cervical 
dysplasia, a precancerous condition or cervical cancer. It 
means that they actually have an infection with the virus that 
causes the disease.
    At this juncture, pap smears are the standard, and we 
should use HPV testing judiciously to augment pap smear 
testing, but all women should get a pap smear on a regular 
basis. A few women ought to get a pap smear along with HPV 
testing.
    If I could just enter my written statement into the record, 
sir, I will conclude with that.
    Chairman Waxman. Thank you very much. Your statement in its 
entirety is part of the record.
    Dr. Brawley. Thank you, sir.
    [The prepared statement of Dr. Brawley follows:]

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    Chairman Waxman. Ms. Fuld Nasso.

                STATEMENT OF SHELLEY FULD NASSO

    Ms. Fuld Nasso. Thank you very much, Mr. Chairman, and 
thank you to all the committee members for holding this very 
important hearing today and for allowing me to testify.
    My name is Shelley Fuld Nasso, and I am director of public 
policy for Susan G. Komen for the Cure Advocacy Alliance.
    Komen for the Cure was founded in 1982 and is the largest 
grassroots network of survivors, breast cancer survivors and 
activists and the world's largest non-profit source of funds 
for fighting breast cancer.
    As you heard, one in eight women will be diagnosed with 
breast cancer in her lifetime, and every one of them deserves 
the same chance to succeed, to survive. Unfortunately, in the 
United States, whether you live or die from breast cancer 
depends in large part on how much money you earn, whether you 
have health insurance, the color of your skin and where you 
live.
    This is unconscionable especially since breast cancer has 
become such a treatable disease. We know that when breast 
cancer is detected early and is still confined to the breast, 
the survival rate is 98 percent.
    Over the past 10 months, we have been traveling around the 
country with the Komen Community Challenge, our grassroots 
campaign to restore the sense of urgency to breast cancer. 
Everywhere we go, we meet women like Ms. Carey who are alive 
today for one reason, because of the breast and cervical 
screening program. I was going to share a couple of their 
stories with you, but I think Ms. Carey said it all, and you 
understand how important this program is.
    Some of the women were uninsured during transitions in 
their lives, like Ms. Carey, because they found themselves 
without insurance. Others were uninsured for longer periods of 
time. They maybe were poor and working, and some of them 
working multiple jobs but still couldn't afford health 
insurance. This screening program was a really important source 
for them to be able to have that care.
    One of the women that spoke at one of our events was 
screened on a regular basis through the program which is very 
important. It wasn't just that she found a lump. She considered 
herself a health nut. She had no concerns, no lump that she 
felt, but she was screened regularly which is very important to 
helping treat, to detect the disease early.
    The program saves lives every day, but as you know we are 
only reaching a fraction of the women who are eligible and 
serving less than one in five, and that means millions of women 
are going without the screenings that they need.
    I am not an epidemiologist, so I wouldn't have estimated 
the number of women whose lives could be saved, but I 
appreciate your, Dr. Brawley's estimates because it is a very 
important question because we know that we don't have enough 
money for this program to save lives that need to be saved.
    We have talked a little bit about digital mammography which 
we know is more expensive than standard mammography, but its 
use is spreading rapidly. While it may be more effective for 
some groups of women, Dr. Brawley has said it is considered 
about equal.
    But the concern is that as it spreads in its use, that 
women are not going to have access if a community in a rural 
area or an urban area has only digital access available, and 
providers are not necessarily willing to accept the lower 
reimbursement rates for standard mammography. And so, we are 
seeing anecdotally from our Komen affiliates around the country 
that some women are not able to have access because all of the 
facilities in their area have become digital.
    We are asking Congress to support this program at a higher 
level, but we are not asking you to do it alone. We really 
believe that this is a true public-private partnership, and 
Komen and its 125 affiliates are doing their part.
    Last year, we provided $70 million in grants to community 
health programs including $25 million around the country for 
the State programs and some of their providers to augment the 
screening services available. This funding provides State 
programs with more flexibility to maintain or increase the 
number of women screened per year, alleviating waiting lists 
and helping to detect cancer earlier.
    One question was asked as to what happens when the money 
run out. Some programs really strategically use their money 
throughout the year so that the money doesn't run out, but in 
other States the funding does run out during the year.
    Our mid-Kansas affiliate has helped to fill that gap when 
the program in Kansas has run out every year for the last 3 
years. In addition, the Kansas program serves women 50 and 
older, and the Komen funds are used to serve the women in their 
40's for the program.
    In addition to funding, Komen affiliates have joined with 
other advocates like the American Cancer Society in urging 
State legislatures to do their part. Not all States do provide 
money for this program. We think that only about a third of the 
States are providing funding.
    They do not have to provide their own dollars for that one 
to three match that we were discussing earlier, and some of our 
advocacy campaigns in conjunction with our colleagues have 
helped raise significant amounts of money at State 
legislatures. In North Carolina, the State assembly approved $2 
million per year for the next 2 years which will allow an 
additional 8,000 women to be served. In Ohio, the State 
approved $5 million over 2 years which will triple the number 
of women who can be served.
    In our first 25 years, Komen invested $1 billion in the 
fight against breast cancer, and we have pledged to invest 
another $2 billion in the next 10 years. So we are not asking 
the Federal Government to do it alone. But, at the same time, 
we can't do it without the Federal Government.
    This program is an important, cost effective and lifesaving 
program. In order to close the gaps that make breast cancer 
deadlier for some women than others, we need the Federal 
Government to increase its commitment to funding the program 
because every woman's life is valuable and every woman is 
someone's mother, wife, sister or friend.
    Thank you very much for listening.
    [The prepared statement of Ms. Fuld Nasso follows:]

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    Chairman Waxman. Thank you very much for you testimony.
    Dr. Joyner.

                    STATEMENT OF PAMA JOYNER

    Ms. Joyner. And I am not a doctor but today I am, I guess.
    Thank you, Mr. Chairman and distinguished members of the 
committee for the opportunity to testify before you today on 
the experience of Washington State with our Breast and Cervical 
Health Program and that of other members, States, tribes and 
territories of the National Association of Chronic Disease 
Directors Breast and Cervical Cancer Council.
    My name is Pama Joyner, and I am the program director for 
Washington's program. My responsibilities include providing 
leadership for program implementation, overall program focus 
and direction, and establishing and maintaining key stakeholder 
relationships.
    Early detection is the best way to reduce deaths from 
breast and cervical cancer and all States, the District of 
Columbia, 12 tribes and 5 territories support a variety of 
strategies to reach underserved women.
    In Washington, our program not only saves lives but also 
enhances the overall health and well being of women who 
participate. Since the program's inception, we have offered 
vital services to thousands of Washington's most economically 
burdened women.
    It is a core value that each woman enrolled received state-
of-the-art screening, diagnostic and treatment services. The 
women's health examination, provided at initial enrollment and 
then repeated with each re-screening, is often the only primary 
care visit these women receive.
    An increasing number of women across the Nation meet the 
eligibility requirements, yet system and resource capacity is 
pressed to even maintain existing service levels with each 
State only able to reach a fraction of the eligible population.
    In Washington, we are reaching approximately 30 percent of 
the eligible uninsured population. In Virginia, they are 
screening 22 percent of their eligible uninsured population 
where Tennessee and New York are reaching 11 percent.
    Illinois, where they recently received a substantial 
increase in State funding for their program, is still only able 
to screen 17 percent of the eligible population. In California, 
they are able to screen approximately 23 percent of the 
eligible uninsured and underinsured population for breast 
cancer and just 8 percent for cervical cancer.
    States use a variety of strategies so that funding either 
meets their screening goals or ensures services are available 
throughout the year. Some States report they run out funding 
before the end of the program year due to meeting their 
screening goals early, and in other States the programs monitor 
enrollment and expenditures to ensure services are available 
all 12 months of the program year.
    Waiting lists are a good indication of program need. 
However, many are uncomfortable in creating waiting lists as 
there is a sense that eligible women are being promised 
services the program may not be able to deliver.
    In Washington State, when screening resources were limited 
to Federal and State funding only, waiting lists were 
instituted. At one point, more than 1,000 women across the 
State were waiting for screening services. We were able to stop 
having waiting lists upon receiving grant awards from the Susan 
G. Komen for the Cure to support breast health screening 
services.
    In Virginia, providers have begun to maintain waiting 
lists. The program currently projects there are approximately 
100 women waiting for services. Florida and Idaho also report 
similar numbers at some of their screening sites by the end of 
the program year. The reason, though, for Ohio's waiting list 
is not due to a lack of funding but to staffing and appointment 
limitations.
    In Tennessee, there is no waiting list. The program 
projects it will need to stop screening mid-May and plans to 
ask women to call back after the start of the new program year, 
July 1st.
    New technologies and increasing health costs impact a 
program's ability to increase their screening numbers. Level 
funding year after year is recognized as a cut, resulting in 
fewer women screened. Other operational costs continue to 
increase while funding remains relatively flat, impacting a 
program's ability to maintain or increase its screening 
numbers.
    Tennessee experienced a significant cost increase when they 
decentralized their program. This created a greater demand for 
services as more eligible women became aware of the program, 
and it impacted their costs in other areas of the program. This 
includes advertising the service, providing the services and 
supporting access to treatment for those women diagnosed with 
cancer. All of these activities are required to meet the 
program performance measures.
    Increasing financial resources to screen more women is 
necessary but having provider capacity to screen more women is 
critical. Many programs rely on the local public health 
agencies and network of community health clinics and others. 
While they use these systems, they also contract with 
individual providers and large private clinic systems.
    In fiscal year 2007, Washington State screened 2,000 more 
women than they did in 2006 and, our goal this year is to 
screen 2,000 more women than we did last year. With just 10 
percent more funding each year, we could continue to increase 
these numbers over the next 4 years and reach 41 percent.
    Early detection is the best way to reduce deaths from 
breast and cervical cancer. Access to screening, diagnostic 
services and treatment is critical for all women, regardless of 
income, education, race or ethnicity.
    However, women with low incomes are less likely to receive 
cancer screening and are more likely to be diagnosed with more 
advanced diseases than higher income women. This national 
program not only saves lives but also enhances the overall 
health and well being of the Nation's most economically 
burdened women.
    Thank you.
    [The prepared statement of Ms. Joyner follows:]

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    Chairman Waxman. Thank you very much, Ms. Joyner.
    Dr. Hoerger.

                  STATEMENT OF THOMAS HOERGER

    Mr. Hoerger. Thank you. Mr. Chairman and members of the 
committee, I am pleased to appear before you today to provide 
you with information regarding a cost analysis conducted by 
researchers at RTI International of the National Breast and 
Cervical Cancer Early Detection Program.
    I am Tom Hoerger, a senior fellow at RTI International and 
also director of the RTI-University of North Carolina Center of 
Excellence in Health Promotion Economics. RTI International is 
an independent, non-profit research organization based in North 
Carolina that conducts a wide range of research and technical 
services for the U.S. Government and private sector clients.
    The study in question was conducted by RTI researchers in 
collaboration with researchers from the U.S. Centers for 
Disease Control and Prevention. Although I am not an author of 
this particular study, I am very familiar with its findings and 
have significant experience in conducting similar studies. The 
study will appear in the February 2008 issue of the journal, 
Cancer.
    The study analyzed the costs associated with the Breast and 
Cervical Cancer Program established by Congress in 1990 to 
deliver breast cancer and cervical cancer screening to 
medically underserved, low income women.
    The study looked at nine participating programs in nine 
different States to answer three economic questions. No. 1, 
what is the cost per women served in the program? No. 2, what 
is the cost per woman served by program component? And, No. 3, 
what is the cost per cancer detected through the program?
    There was wide variation in the nine programs from State to 
State in terms of organization, reliance on in-kind 
contributions and the number of women served. These and other 
factors contributed to a fairly wide variation in costs.
    We found that the median cost in the nine State programs 
was $555 per woman served. This figure includes the value of 
in-kind contributions such as donated goods and services. 
Without in-kind contributions, the cost was $519 per woman 
served.
    The term, women served, includes the number of women 
screened in the program plus the number of women who were 
screened outside the program and were referred to the program 
at the diagnostic stage for followup of abnormal results.
    When looking at the screening alone, screening for breast 
cancer costs $94 per patient while the cost for cervical cancer 
screening was $56 per patient. These estimates are within the 
range of estimates for the costs of breast and cervical cancer 
screening in other settings and programs.
    The median number of breast and cervical cancers detected 
per program was 75 and 26, respectively. Based on these 
figures, the study found that the cost per breast cancer 
detected was $10,566. The cost per detection of cervical cancer 
was $13,340.
    Based on the research, there is also some evidence of 
possible economies of scale in that average costs may go down 
with the number of women screened. However, the evidence is not 
conclusive because only a small number of programs were 
surveyed. In addition, the sites were not randomly selected.
    The study also assessed the program's allocation of funds. 
Almost 60 percent of the program funds were used for direct 
clinical services which include screening and diagnostic 
followup, referral for treatment and case management.
    The remaining 40 percent of program resources were 
dedicated to activities including public education and 
outreach, professional education, quality assurance and 
improvement, surveillance and evaluation. These activities help 
address issues other than financial barriers that prevent low 
income women from receiving cancer screening services.
    Studying only nine of the programs for just 1 year leaves 
some limitations in the findings because the sample size is 
small and we know that funding and other sources of resources 
vary from year to year depending on activities planned.
    However, we are currently conducting a second phase of this 
study that will provide a more comprehensive examination of the 
costs associated with screening in the program. Phase two of 
the study is examining all 68 breast and cervical cancer 
programs operating in the United States.
    Collecting cost data from all of the programs will provide 
a much richer understanding of program variation and will 
support econometric analysis of cost determinants. We will test 
for economies of scale and be able to control for differences 
in cost of living between programs. The data may allow us to 
identify best practices and learn more about the optimal mix of 
spending across program activities.
    This study is expected to be completed in 2009.
    Thank you for your time.
    [The prepared statement of Mr. Hoerger follows:]

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    Chairman Waxman. Thank you very much for your testimony. I 
want to thank all of you for your presentations.
    I want to start the questioning. For Ms. Joyner, I want to 
thank you for your work in Washington State and for the 
National Council of State Programs. I would like to ask some 
questions about the shortfalls you have described in various 
States' breast and cervical cancer screening programs.
    First of all, all States have to make some contribution to 
their screening program. Isn't that correct?
    Ms. Joyner. Yes, that is correct.
    Chairman Waxman. Have all States been able to contribute 
additional State funds?
    Ms. Joyner. No, not all States contribute State funding. 
So, in terms of their in-kind or match that they are needing to 
come up with, they can either find providers are kicking or 
another way would be looking at what the usual and customary 
cost is of a particular test and when you subtract the Medicare 
reimbursement rate, whatever that balance is can also be 
counted as an in-kind cost.
    Chairman Waxman. So they have a number of streams of 
funding. Is there always a steady stream that State directors 
can rely on for their annual planning?
    Ms. Joyner. No.
    For Washington State, we do have an annual or biennial 
budget in State funds. We have our Federal grant which through 
the 5-year cooperative agreement, and then we receive funding 
from three Komen affiliates, a private local foundation and, 
most recently, American Cancer Society. And those, of course, 
are all annual grant awards that we apply for and are 
contingent on the priorities of the affiliates' boards.
    Chairman Waxman. I would imagine the States with high 
numbers of eligible women might be among the States least 
equipped to allocate State dollars to screening. Is that an 
accurate statement?
    Ms. Joyner. I think there is a variety of States that have 
a high eligible population, and some of those States do have 
State funding and some don't have any State funding.
    Chairman Waxman. When a State program runs out of money for 
the year, what happens to women who are seeking mammograms?
    Ms. Joyner. Well, a number of things can happen. In some 
States, they have the ability to make resources available, 
especially if they have women who are calling, who are 
reporting systems of some sort. So they would not turn them 
away. So they have that assurance that women needing services 
will continue to be screened.
    In other States, they have to just stop and either start 
taking names or asking women to call back after the start of 
the new program cycle.
    Chairman Waxman. So they either put them on a waiting list 
or they refer them then to public clinics?
    Ms. Joyner. They could refer them to the public clinic, 
again, where they might be facing looking at a sliding fee 
scale or taking on bills that they can't pay.
    Chairman Waxman. Dr. Brawley, a vaccine to prevent 
infection with several of the cancer-causing strains of HPV 
have been licensed by the FDA and is recommended for young 
women and adolescents from age 9 to 26. A second vaccine, HPV 
vaccine, is in the pipeline.
    This is a potentially lifesaving advancement, but the 
vaccine is more expensive than many of the older vaccines. 
Isn't that correct?
    Dr. Brawley. Yes, sir. The vaccine is somewhere in the 
neighborhood of $200 a dose, and it requires three doses.
    Chairman Waxman. So $200 for each dose or $200 for the 
three?
    Dr. Brawley. Yes, sir, per dose, $600 total.
    Chairman Waxman. $600.
    The Vaccines for Children Program will provide vaccines for 
eligible girls 18 and under, but there is no comprehensive 
program to make the vaccine available to uninsured or 
underinsured women from age 18 to 26.
    Are you concerned that uninsured and underinsured women 
will not be able to afford this vaccine and will therefore miss 
out on its benefits?
    Dr. Brawley. Yes, sir. I am tremendously concerned about 
that, sir.
    Chairman Waxman. Representative Roybal-Allard and I on the 
House side and Senator Kennedy on the Senate side have 
introduced legislation to create a Federal Vaccine for 
Uninsured Adults Program. This program is modeled on the 
Vaccines for Children and would give women who may not be able 
to afford the HPV vaccine, access to this vaccine as well as 
other important adult immunizations.
    I hope that the American Cancer Society will take a look at 
this legislation. We would love to have your support.
    Dr. Brawley. Sir, I can promise you, we definitely take a 
look at it, and I would be shocked if we don't support it.
    Chairman Waxman. OK. Thank you.
    One of the unfortunate disappointments to me in this so-
called stimulus package that we are going to be voting on, on 
the House floor today is that we didn't provide more money for 
the Medicaid program for the States. We did last time there was 
a recession and we passed a stimulus program, a one-time 
stimulus.
    I think that is something that many of you might want to 
speak up about because if the States, looking at more people 
losing their jobs, more people losing their insurance, more 
people going on Medicaid because they have no other 
alternative, whether it is for this program or any other, they 
are going to be hard put because the States are going to be 
cutting back on Medicaid. They will be generating less revenues 
as unemployment goes up. That is what we call counter-cyclical.
    I am disappointed it is not in this package, but I think we 
ought to be pushing to get some more help for Medicaid because 
we are going to need those funds as more people find 
themselves, even in surprising ways, unexpectedly uninsured, 
like the situation Ms. Carey had to confront.
    Thank you very much.
    I want to recognize my colleague for questions for 5 
minutes.
    Mr. Higgins. Thank you, Mr. Chairman.
    Dr. Brawley, I would just like to ask you about, again, the 
status of the 2015 Campaign. Where are things at and is it 
still a stated goal?
    Dr. Brawley. Well, sir, there were two 2015 goals out 
there. The first was the American Cancer Society's goal which 
was to halve the incidents of cancer and significantly 
decreased mortality from cancer from 2015, and it is still 
there.
    We are slightly off target. Part of the reason that we have 
been pointing out the access to care is a huge problem in the 
United States is because we need to fix the access to care 
problem to get back on track for the ACS 2015 goals, which are 
still reachable.
    But this is a breast and cervical cancer hearing, but I 
will tell you one is better off in this country with stage two 
colon cancer and insurance than to have stage one colon cancer 
and no insurance. Better to have the more advanced disease with 
insurance than to have the less advanced disease without 
insurance because the 5-year survival rate of a stage two 
insured patient in the United States, regardless of race, is 
superior to the 5-year survival of a stage one patient without 
insurance.
    But that is a long-winded way of saying we need to look at 
access to care. We need to look at all kinds of programs like 
this to get treatments that are proven.
    You gave a wonderful talk about research. I was at the 
National Cancer Institute for years, and I am a tremendous 
believer in doing more research, but we are talking about today 
is research that has already been completed that people do not 
get to enjoy.
    Mr. Higgins. The 14 or 15 percent of those who are getting 
treated, who are eligible for the Breast and Cervical Cancer 
Early Detection Program, what is the approximate breakdown? 
Anybody from the panel, what is the approximate breakdown of 
the sources of funding for those programs?
    I am trying to get, I suppose, at the level to which the 
Federal Government is responsible for that 14 percent of those 
who are eligible.
    Ms. Joyner. So all 68 programs receive Federal funding from 
CDC, and then out of those 68 programs a variety have some 
State funding, have Komen funding, have American Cancer Society 
funding, but there still are a handful of States that have only 
Federal funding and no other sources.
    Mr. Higgins. How are those moneys distributed?
    My understanding is a lot of the cancer research funding, 
there are comprehensive cancer centers that do research, and 
then they apply to the National Cancer Institute for funding 
relative to promising research. How is the Federal piece 
accessed, I suppose?
    Ms. Joyner. For the screening program?
    Mr. Higgins. Yes.
    Ms. Joyner. OK. Well, the screening program doesn't have, 
first of all, anything to do with research.
    Mr. Higgins. Right.
    Ms. Joyner. So, and each grantee has their way of going 
about allocating funds.
    So, in Washington State, we have a service delivery system 
which we call our prime contractors. Those are seven 
organizations. Four are local public health jurisdictions. Two 
are hospitals, and one is a community-based organization. They, 
in turn, subcontract with providers that are made up of 
community health networks, private practices and some larger 
clinical systems.
    Mr. Higgins. Given limited funding, is that an efficient 
way to distribute those moneys?
    Ms. Joyner. It has been an extremely efficient way of 
expending the funds. Prior to moving the decentralized model, 
we operated as a centralized State where the State Health 
Department put all the dollars out, collected all the data, 
ensured that all the women were being screened, and there were 
many challenges and the funding was not expended in the most 
efficient manner.
    Mr. Higgins. You would identify Washington State as a model 
for efficient delivery of those?
    Ms. Joyner. For what works for the geographic regions of 
our States, how we are laid out, the system that we built, yes.
    Mr. Higgins. I have no more questions, Mr. Chairman. Thank 
you.
    Chairman Waxman. Thank you very much, Mr. Higgins.
    I want to ask a few more questions if I might.
    Ms. Carey, one of the concerns that many of us have is 
whether women know about this program for screening and then 
for care if they need it. You found out about it through the 
American Cancer Society. Is that right? Somebody from the 
American Cancer Society told you about it?
    Ms. Carey. Actually, I found out about it from this woman 
who worked at the hospital because she worked at the 
mammography division of the hospital as a certified mammotech, 
and I mean she is my best friend. She was frantic to save my 
life, and she found out because they had the literature at the 
center itself.
    And I think that would be part of the problem is that they 
are not reaching enough people, but then also the problem is 
that the people they are reaching, like they say, they are 
over-booked.
    I mean I was extremely fortunate. I say that I am extremely 
lucky. I shouldn't be sitting here today. If not for Kim 
letting me know, I wouldn't have known because I had gone to. I 
went to the HIPP center for Medicaid. I was looking for a 
Healthy New York type of program, like a policy for insurance 
just to get me through until I could have my own insurance.
    And the woman took all my identification, my pay slips and 
my identification and my birth certificate, and then she very 
flippantly says. Well, she goes.
    I said, well how long do you think it will take to process 
this?
    She goes, well, this could sit on somebody's desk for 2 
months.
    And I was panicking. I said, well, I don't have 2 months, 
and I just gathered up all my stuff. I said, you know what? 
Just forget about it.
    That is when Kim came to me. She said, Gail, you are not 
going to believe this, and I didn't believe it.
    Chairman Waxman. Well, the program just started in New 
York.
    Ms. Carey. It had only just started that month, that year.
    Chairman Waxman. We hope that more women hear about it even 
if they don't have a very close friend, personally, to tell 
them about it.
    Ms. Carey. Absolutely.
    Chairman Waxman. So you think the outreach to women to let 
them know, the education about such a program is essential, I 
would assume.
    Ms. Carey. Absolutely, and they have made huge strides in 
the past 5 years alone, huge strides. It is unbelievable how 
many people they have been able to reach and caught this so 
much earlier.
    And, again, you know what they have stressed here, because 
I was so advanced in my cancer, the cost of my treatment was 
absolutely cost-prohibitive. I am embarrassed to say. Again, 
the reason that I am here is because I am absolutely paying 
back for the rest of my life because I am that grateful because 
if I hadn't been so frightened and so proud about, I would have 
sought treatment a great deal earlier.
    If this program, for women who seek treatment, the cost is 
unbelievable. I would have gotten screening. I would have been 
treated. I would have had no problem.
    Chairman Waxman. You were trying to get into Medicaid, and 
that was taking time.
    Ms. Carey. I absolutely was trying. I was frantic.
    Chairman Waxman. Getting right through the screening 
program got you into the Medicaid program right away for the 
care you needed.
    Ms. Carey. Right through, immediately.
    You know what? The other misconception, and I really want 
to address this, is a lot of people say, oh, my gosh, you know 
every year we are going to have to pay for these people in 
Medicaid.
    It is not that way. We are not looking for a handout. We 
are people who have worked all of our lives. We have paid our 
taxes. We have paid our insurance. We have always had 
insurance. We are not deadbeats.
    I was frantic to save my house. When I finally did get my 
feet, when I was able to establish that I actually had.
    I mean even my boss. I started working at this, for a 
doctor actually. Two weeks later, I was diagnosed with this 
cancer, and she held my job for me here, 5\1/2\ years later, 
and I am still with the same doctor. He is extremely 
sympathetic for the program, for anybody else who is on 
Medicaid.
    Chairman Waxman. Let me ask you one other question, and 
then I want to ask some of the other members in the short time 
I have left.
    Ms. Carey. Yes.
    Chairman Waxman. The program is not just to screen, as 
important as that is. Originally, that is all we got was a 
screening program for breast and cervical cancer.
    Ms. Carey. Right, right.
    Chairman Waxman. I remember when Mrs. Quayle came in, and I 
was chairman of the subcommittee and authored the bill to 
provide for the breast and cervical cancer program.
    Ms. Carey. Wow. Thank you.
    Chairman Waxman. But I said what if we find out that they 
have cancer? What are we going to do then?
    She said, well, at least we want to give them that 
information. Of course, it is pretty harmful.
    Ms. Carey. But they don't leave you hanging.
    Chairman Waxman. Yes, it leaves you hanging.
    Ms. Carey. They don't.
    Chairman Waxman. Once you're covered for treatment, what I 
have heard and from your own experience, is that it is really 
essential to have a case manager to help you through the whole 
process.
    Ms. Carey. Yes, unbelievable. Yes.
    Chairman Waxman. Did you think that was essential for you?
    Ms. Carey. That was the most astounding thing. It was a 
brand new program, and they had such a network. It was like I 
was passed from person to person to person from oncologists, 
surgeons, hospitals, and you never ever felt like you were 
being dropped.
    The support system through the American Cancer Society was 
like nothing I have ever seen. You don't realize how important 
the Society is until you have the opportunity to use them, and 
I have been so blessed by this Society.
    Chairman Waxman. You are a very strong and excellent 
spokesperson for this effort from your own experience.
    Ms. Carey. Thank you, and I have since gotten off the 
program. I am on my own insurance now. So I am saying it is not 
a handout. It is just hand up.
    Chairman Waxman. Absolutely not.
    Ms. Carey. We just need to get from one place to the other.
    Chairman Waxman. Absolutely not. I agree with you 
completely.
    Ms. Carey. Now I am good to go. So, thank you. Thank you so 
much.
    Chairman Waxman. Even though my time is expired, since I am 
the chairman, I am going to take advantage of the opportunity 
to ask Ms. Fuld Nasso a question. [Laughter.]
    Your organization helps a number of States to address the 
gap in breast screening programs. How do you make the decisions 
of where the Komen funds are going to go?
    Ms. Fuld Nasso. We have a network of 125 affiliates around 
the country.
    Chairman Waxman. Is your mic on?
    Ms. Fuld Nasso. Let me pull it closer.
    We have a network of 125 affiliates around the country, and 
they raise money through events like the Komen Race for the 
Cure and other events in their community. They keep 75 percent 
of that, of the money in their community and give 25 percent to 
our research programs.
    Each one of those affiliates has a grants committee that 
reviews requests for grants, and so in some cases they give the 
money directly to the State program in order to supplement. 
Like the example that Ms. Joyner said, in Washington where she 
receives money, her program receives money from three of the 
affiliates in Washington.
    In other cases, the affiliates work with the State program 
to identify the right providers that need additional funding 
and give that money directly to those providers. Sometimes it 
is also to help with the outreach and the advertising.
    Chairman Waxman. It first goes to the people. It first goes 
to the area where the people who are raising the money direct 
it.
    Ms. Fuld Nasso. Right, it goes in the community where the 
affiliate is. Right.
    Chairman Waxman. Then 25 percent can go elsewhere to other 
places where there is a huge gap in funding?
    Ms. Fuld Nasso. The 25 percent actually to our national 
research program, and we are planning to grant $100 million for 
research this year, and that comes from money that we raise in 
headquarters and also money that our affiliates around the 
country raise.
    Chairman Waxman. Well, I would assume that you probably 
have a pretty good sense of where the holes in screening are 
around the country.
    I want to ask you for the record if you would send us this 
information, recommendations you would make about how the 
Federal and State governments can systematically narrow that 
screening gap in the areas where we have seen it. If you would 
send that information, we would welcome it.
    Ms. Fuld Nasso. Yes, we can definitely get you that 
information.
    Chairman Waxman. I thank all of you very much for your 
presentation. I hope this hearing will be able to give us the 
ability to make the case, as you have eloquently done, why this 
program is essential, why we need to fund it adequately, and 
the absolute benefit of putting money into find cancer at an 
early time when it can be dealt with.
    I thank each and every one of you.
    Ms. Fuld Nasso. Thank you very much.
    Chairman Waxman. That concludes our hearing today, and the 
committee stands adjourned. Thank you so much.
    [Whereupon, at 11:55 a.m., the committee was adjourned.]
    [Additional information submitted for the hearing record 
follows:]

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