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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

(

Available via the World Wide Web: http://www.gpoaccess.gov/congress/index.html

http://www.house.gov/reform

(II)

COMMITTEE ON OVERSISGHT AND GOVERNMENT REFORM

HENRY A. WAXMAN, California, Chairman

TOM LANTOS, California

EDOLPHUS TOWNS, New York

PAUL E. KANJORSKI, Pennsylvania

CAROLYN B. MALONEY, New York

ELIJAH E. CUMMINGS, Maryland

DENNIS J. KUCINICH, Ohio

DANNY K. DAVIS, Illinois

JOHN F. TIERNEY, Massachusetts

WM. LACY CLAY, Missouri

DIANE E. WATSON, California

STEPHEN F. LYNCH, Massachusetts

BRIAN HIGGINS, New York

JOHN A. YARMUTH, Kentucky

BRUCE L. BRALEY, Iowa

ELEANOR HOLMES NORTON, District of

Columbia

BETTY MCCOLLUM, Minnesota

JIM COOPER, Tennessee

CHRIS VAN HOLLEN, Maryland

PAUL W. HODES, New Hampshire

CHRISTOPHER S. MURPHY, Connecticut

JOHN P. SARBANES, Maryland

PETER WELCH, Vermont

TOM DAVIS, Virginia

DAN BURTON, Indiana

CHRISTOPHER SHAYS, Connecticut

JOHN M. MCHUGH, New York

JOHN L. MICA, Florida

MARK E. SOUDER, Indiana

TODD RUSSELL PLATTS, Pennsylvania

CHRIS CANNON, Utah

JOHN J. DUNCAN, JR., Tennessee

MICHAEL R. TURNER, Ohio

DARRELL E. ISSA, California

KENNY MARCHANT, Texas

LYNN A. WESTMORELAND, Georgia

PATRICK T. MCHENRY, North Carolina

VIRGINIA FOXX, North Carolina

BRIAN P. BILBRAY, California

BILL SALI, Idaho

JIM JORDAN, Ohio

PHIL SCHILIRO, Chief of Staff

PHIL BARNETT, Staff Director

EARLEY GREEN, Chief Clerk

DAVID MARIN, Minority Staff Director

(III)

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

(1)

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

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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

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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:]

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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

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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:]

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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:]

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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:]

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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.

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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.

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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

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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

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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:]

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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.

42

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.

43

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.

44

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.

45

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: proVerDate 11-MAY-2000 14:18 Jun 27, 2008 Jkt 000000 PO 00000 Frm 00049 Fmt 6633 Sfmt 6633 C:\DOCS\42583.TXT KATIE PsN: KATIE
46

fessional 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.

47

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.

48

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.

49

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.

50

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

51

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

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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?

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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 nonbinding 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

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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.

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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 RTIUNC 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.

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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.

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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,

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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.

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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.

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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

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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

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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-theart 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.

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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 concluVerDate 11-MAY-2000 14:18 Jun 27, 2008 Jkt 000000 PO 00000 Frm 00109 Fmt 6633 Sfmt 6633 C:\DOCS\42583.TXT KATIE PsN: KATIE
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sive 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.

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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 neigh- borhood 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.

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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

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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.

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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, 51⁄2 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.

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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.

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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 re- search 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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