[House Hearing, 106 Congress]
[From the U.S. Government Publishing Office]



 
     BREAST AND CERVICAL CANCER FEDERALLY FUNDED SCREENING PROGRAMS

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

                                HEARING

                               before the

                            SUBCOMMITTEE ON
                         HEALTH AND ENVIRONMENT

                                 of the

                         COMMITTEE ON COMMERCE
                        HOUSE OF REPRESENTATIVES

                       ONE HUNDRED SIXTH CONGRESS

                             FIRST SESSION

                                   on

                               H.R. 1070

                               __________

                             JULY 21, 1999

                               __________

                           Serial No. 106-42

                               __________

            Printed for the use of the Committee on Commerce




                     U.S. GOVERNMENT PRINTING OFFICE
58-502 CC                    WASHINGTON : 1999


                    ------------------------------  





                         COMMITTEE ON COMMERCE

                     TOM BLILEY, Virginia, Chairman

W.J. ``BILLY'' TAUZIN, Louisiana     JOHN D. DINGELL, Michigan
MICHAEL G. OXLEY, Ohio               HENRY A. WAXMAN, California
MICHAEL BILIRAKIS, Florida           EDWARD J. MARKEY, Massachusetts
JOE BARTON, Texas                    RALPH M. HALL, Texas
FRED UPTON, Michigan                 RICK BOUCHER, Virginia
CLIFF STEARNS, Florida               EDOLPHUS TOWNS, New York
PAUL E. GILLMOR, Ohio                FRANK PALLONE, Jr., New Jersey
  Vice Chairman                      SHERROD BROWN, Ohio
JAMES C. GREENWOOD, Pennsylvania     BART GORDON, Tennessee
CHRISTOPHER COX, California          PETER DEUTSCH, Florida
NATHAN DEAL, Georgia                 BOBBY L. RUSH, Illinois
STEVE LARGENT, Oklahoma              ANNA G. ESHOO, California
RICHARD BURR, North Carolina         RON KLINK, Pennsylvania
BRIAN P. BILBRAY, California         BART STUPAK, Michigan
ED WHITFIELD, Kentucky               ELIOT L. ENGEL, New York
GREG GANSKE, Iowa                    THOMAS C. SAWYER, Ohio
CHARLIE NORWOOD, Georgia             ALBERT R. WYNN, Maryland
TOM A. COBURN, Oklahoma              GENE GREEN, Texas
RICK LAZIO, New York                 KAREN McCARTHY, Missouri
BARBARA CUBIN, Wyoming               TED STRICKLAND, Ohio
JAMES E. ROGAN, California           DIANA DeGETTE, Colorado
JOHN SHIMKUS, Illinois               THOMAS M. BARRETT, Wisconsin
HEATHER WILSON, New Mexico           BILL LUTHER, Minnesota
JOHN B. SHADEGG, Arizona             LOIS CAPPS, California
CHARLES W. ``CHIP'' PICKERING, 
Mississippi
VITO FOSSELLA, New York
ROY BLUNT, Missouri
ED BRYANT, Tennessee
ROBERT L. EHRLICH, Jr., Maryland

                   James E. Derderian, Chief of Staff

                   James D. Barnette, General Counsel

      Reid P.F. Stuntz, Minority Staff Director and Chief Counsel

                                 ______

                 Subcommittee on Health and Environment

                  MICHAEL BILIRAKIS, Florida, Chairman

FRED UPTON, Michigan                 SHERROD BROWN, Ohio
CLIFF STEARNS, Florida               HENRY A. WAXMAN, California
JAMES C. GREENWOOD, Pennsylvania     FRANK PALLONE, Jr., New Jersey
NATHAN DEAL, Georgia                 PETER DEUTSCH, Florida
RICHARD BURR, North Carolina         BART STUPAK, Michigan
BRIAN P. BILBRAY, California         GENE GREEN, Texas
ED WHITFIELD, Kentucky               TED STRICKLAND, Ohio
GREG GANSKE, Iowa                    DIANA DeGETTE, Colorado
CHARLIE NORWOOD, Georgia             THOMAS M. BARRETT, Wisconsin
TOM A. COBURN, Oklahoma              LOIS CAPPS, California
  Vice Chairman                      RALPH M. HALL, Texas
RICK LAZIO, New York                 EDOLPHUS TOWNS, New York
BARBARA CUBIN, Wyoming               ANNA G. ESHOO, California
JOHN B. SHADEGG, Arizona             JOHN D. DINGELL, Michigan,
CHARLES W. ``CHIP'' PICKERING,         (Ex Officio)
Mississippi
ED BRYANT, Tennessee
TOM BLILEY, Virginia,
  (Ex Officio)

                                  (ii)


                            C O N T E N T S

                               __________
                                                                   Page

Testimony of:
    Braun, Susan, President and CEO, the Susan G. Komen Breast 
      Cancer Foundation..........................................    55
    Klausner, Stanley............................................    64
    Lee, Nancy C., Director, Division of Cancer Prevention and 
      Control, Centers for Disease Control.......................    18
    Tapp, Carolyn, President, Women of Color Breast Cancer 
      Survivors Support Project..................................    62
    Visco, Fran, President, National Breast Cancer Coalition.....    49

                                 (iii)

  


     BREAST AND CERVICAL CANCER FEDERALLY FUNDED SCREENING PROGRAMS

                              ----------                              


                        WEDNESDAY, JULY 21, 1999

                  House of Representatives,
                             Committee on Commerce,
                    Subcommittee on Health and Environment,
                                                    Washington, DC.
    The subcommittee met, pursuant to notice, at 10 a.m., in 
room 2322, Rayburn House Office Building, Hon. Michael 
Bilirakis (chairman) presiding.
    Members present: Representatives Bilirakis, Ganske, Coburn, 
Lazio, Bryant, Brown, Waxman, Green, DeGette, Barrett, Capps, 
Eshoo and Dingell (ex officio).
    Staff Present: Marc Wheat, majority counsel; Bridgett 
Taylor, minority professional staff; and Karen Folk.
    Mr. Bilirakis. The hearing will come to order.
    The topic of today's legislative hearing is H.R. 1070, 
legislation introduced by our colleagues Rick Lazio and Anna 
Eshoo. This bill would allow States to expand coverage under 
the Medicaid program to certain breast and cervical cancer 
patients who were screened under the National Breast and 
Cervical Cancer Early Detection Program. I was pleased to join 
many of my colleagues on both sides of the aisle on 
cosponsoring this legislation.
    Members of the subcommittee have a record of working 
together on a bipartisan basis to improve women's health, 
including efforts to fight breast and cervical cancer. Last 
year, the subcommittee approved a Mammography Quality Standards 
Reauthorization Act, which was enacted into law to ensure safe 
and accurate mammograms. The new law requires that women 
receive direct notice of their mammography results in writing.
    In March, the subcommittee held a hearing to raise 
awareness of the threat of cervical cancer and the importance 
of regular Pap smear exams. Experts emphasize the need to 
better understand how cervical cancer is transmitted and the 
importance of early detection. They noted that cervical cancer 
is readily treatable, if caught at an early stage.
    Today we will discuss how best to ensure that breast and 
cervical cancer patients receive the treatment that they need. 
In particular, we will focus on women screened under the 
National Breast and Cervical Cancer Early Detection Program, 
which is administered by the Centers for Disease Control and 
Prevention.
    Last year, legislation, that I am proud to say I sponsored, 
was enacted into law to reauthorize this important program and 
other women's health initiatives at the CDC and the National 
Institutes of Health. That bill, the Women's Health Research 
and Prevention Amendments of 1998, enjoyed the support of full 
committee Chairman Bliley, the Ranking Member Dingell, 
subcommittee Ranking Member Brown and many of our colleagues. 
An important provision of the bill, which was included at 
Representative Lazio's request, explicitly authorized case 
management services to assist breast and cervical cancer 
patients in obtaining treatment. Since 1990, the CDC's program 
has screened approximately one and a quarter million women in 
every State in the country for breast and cervical cancer. Mr. 
Brown and I had the opportunity to learn more about this 
important program from Dr. Nancy Lee, Director of the Division 
of Cancer Prevention and Control during our recent trip in the 
CDC's Atlanta headquarters, and I am very, very pleased to 
welcome Dr. Lee to our hearing this morning.
    I also want to welcome all of our other witnesses, Fran 
Visco, President of the National Breast Cancer Coalition; Susan 
Braun, President and CEO of the Susan G. Komen Breast Cancer 
Foundation; Carolyn Tapp, President of the Women of Color 
Breast Cancer Survivors; and Dr. Stanley Klausner, a surgeon 
who volunteers his time to treat patients.
    Before we begin, and before I recognize my very good friend 
Mr. Brown, I want to make one personal comment. I have noted, 
with regret, and I mean with great regret, an increase in 
partisan rhetoric during our subcommittee's recent 
deliberations. While I respect each member's views, I hope and 
expect that our discussion of issues of this magnitude will be 
conducted in a bipartisan atmosphere. No one should use breast 
and cervical cancer patients as pawns to score political 
points.
    I look forward to the testimony of all of our witnesses, I 
hope they can help us understand the best course of action to 
help breast and cervical cancer patients obtain the treatment 
they need, and recognize Mr. Brown for an opening statement.
    Mr. Brown. I thank the chairman. I would like to yield my 
time to my friend from California, Ms. Capps, who has a markup, 
and I will let her go first if she would.
    Ms. Capps.
    Mrs. Capps. I thank----
    Mr. Bilirakis. You are yielding your turn, not your time.
    Mr. Brown. And my turn and my time if you insist.
    Mrs. Capps. I don't want to take my colleague's time.
    Mr. Bilirakis. Ms. Capps, please.
    Mrs. Capps. Thank you. I appreciate my colleague's 
relinquishing of his time, not his time but his turn, so I can 
attend another Commerce Committee markup.
    Good morning to you all, and thank you to our chairman for 
holding this important hearing today on the Breast and Cancer 
Treatment Act. This bill now has 260 cosponsors with 
outstanding bipartisan support. Earlier this year, I was 
pleased to join Congresswoman Anna Eshoo and Congressman Rick 
Lazio in introducing H.R. 1070, and I have been proud to join 
them in gathering support for this important legislation.
    I would especially like to welcome one of our expert 
panelists from my home State of California, Carolyn Tapp, 
President of the Women of Color Breast Cancer Survivors Support 
Project in Los Angeles.
    This bipartisan bill gives States the option to provide 
Medicaid coverage to uninsured or underinsured women who have 
been diagnosed through the National Breast and Cervical Cancer 
Program called NBCCEDP. Approximately 3,600 low income women 
per year are screened through this program and often cannot 
afford treatment for desperately needed services.
    These women are often slow in seeking out screening, 
sometimes with very sad consequences, but imagine being 
screened, having this terrible diagnosis, and then having no 
resources for treatment.
    As a nurse, I am acutely aware that all of the screening in 
the world won't help if women who are diagnosed do not have 
access to quality treatment for their condition. In addition, 
these women are often left to an ad hoc patchwork of providers, 
volunteers and charity care programs making their treatment 
unpredictable, delayed or incomplete.
    A study released by the Centers for Disease Control in 
January 1998 found that although treatment had been initiated 
for most women in whom cancer was diagnosed, the system of 
treatment was tenuous and fragile at best.
    And this is what we are talking about today. Not only is it 
worrisome that some women are not getting treatment but those 
who are getting treatment are not getting it--are getting it in 
a piecemeal fashion. Many women must seek charitable services 
from doctors for their treatment.
    Some women experience time delays, and as we know, for 
cancer patients time is a most precious commodity. Every day, 
every minute counts. We cannot leave these women to basically 
fend for themselves as they are going through one the most 
challenging and frightening experiences of their lives.
    Cancer victims and their families cannot rely on a 
treatment system that cannot sustain itself. Long-term 
solutions are greatly needed, and that is what the Breast and 
Cervical Cancer Treatment Act provides. It allows States the 
option to provide Medicaid coverage to uninsured or 
underinsured women who have been diagnosed through NBCCEDP. To 
encourage participation, the bill also provides that States who 
take up this option would receive enhanced Federal matching 
funds.
    Breast cancer experts from the Santa Barbara Breast Cancer 
Institute in my district have offered their strong support for 
this bill. In the words of Dr. Alison Mayer-Oakes, the Breast 
and Cervical Treatment Act will greatly improve underinsured 
and uninsured women's access to more timely breast and cervical 
treatment. More timely treatment will be a matter of life and 
death. It will significantly improve the quality of life and 
survival of these women.
    I would like to reiterate my thanks to the chairman for 
holding this hearing, but what we really need now is a markup 
to move this bill out of committee and onto the House floor. 
Our list of 260 cosponsors from both side of the aisle speaks 
loud and clear. The time has come to pass this significant 
legislation.
    So, Mr. Chairman, I call on you to hold a markup on this 
bill right away, but seize this opportunity to ease the 
suffering of women with breast and cervical cancer around this 
country.
    I yield back the balance of my time.
    Mr. Bilirakis. Thank the gentlelady.
    Mr. Lazio for an opening statement.
    Mr. Lazio. Thank you, Mr. Chairman. Let me begin by 
thanking you for holding this hearing and for your support. As 
Representative Capps has mentioned, we have over 260 cosponsors 
now on this legislation, 25 out of the 30 subcommittee members 
of this subcommittee are cosponsors, three-fourths of the full 
committee are cosponsors of this legislation. And I want to 
thank you personally, Mr. Chairman, for not just your 
cooperation and your interests and your commitment to this, but 
your commitment to this particular piece of legislation about 
becoming a cosponsor.
    Everybody here knows that the screening program, the CDC 
screening program, is largely a success, but that screening is 
only half the battle. As the system currently stands, most 
women do receive treatment. No one is denying that, but based 
on the testimony that I have read and that we will hear today, 
there is some disagreement as to the quality of the treatment 
and the timing of the treatment that many women received.
    After reading Nancy Lee's written testimony, one might 
believe that the program is operating almost perfectly, but I 
question whether CDC actually looked beneath the surface of 
their members. And CDC's own recent study of the program that 
Ms. Lee cites in her testimony, the conclusions are not so 
rosy.
    The study I read found that developing and maintaining a 
network and a system for diagnosis, follow-up and treatment 
takes an enormous amount of time and effort. Treatment, the 
study says, is short-term, labor intensive and diverts critical 
resources away from the screening program. As a result, doctors 
and other providers are not inclined to participate, 
restricting the number of women screened.
    Also the managed care environment limits the number of 
doctors willing and able to offer free or reduced fee services. 
Treatment is cited as one of the study's recommendations.
    I am quite frankly also disappointed in the testimony of 
the Komen Foundation. At my request, several months ago my 
staff first reached out to them on several occasions to discuss 
the legislation, any concerns that they might have on this 
bill; unfortunately no concerns were forthcoming. I don't want 
people to misread what I am saying here. It is that I am not a 
supporter for Race for the Cure. I think it is a wonderful 
organization, I applaud the people that work there, I enjoy 
working with Priscilla and Senator Mack, but I want to register 
my disappointment about the lack of communication.
    I know there is some opposition to this bill, people will 
cite numbers showing that the program helps women find 
satisfactory treatment, but I want to tell you that is not true 
in all cases. Judy Lewis from my district is not a number. She 
is a human being dying from cancer and she is not finding the 
cure she deserves as a woman screened by the Federal 
Government.
    She was a waitress and didn't have the insurance through 
her employer like many people who work in low income and small 
businesses. I invited her today to speak to the committee about 
her experience in the screening program, but she couldn't be 
here, because after finding no option but to spend out all of 
her money, she had to attend her own Medicaid fair hearing to 
determine whether she is eligible for the program. She had to 
wait 1 year almost to the day for this Medicaid hearing.
    Her story is a moving one and I guarantee you there are 
many, unfortunately many Judy Lewises, hundreds of them in each 
and every one of our districts.
    So, Mr. Chairman, I thank you for scheduling the hearing 
and for all the work you have done for women in this program. I 
hope we can quickly move this bill through the legislative 
process. My commitment to women in this program will not end 
here.
    I know that those of us who are working hard for this will 
also fight for Judy and many like her, and I want to thank Ms. 
Eshoo, who has been of invaluable help frankly in getting to 
that 263 member cosponsor. We had set a goal and it was Anna's 
suggestion, let us set a goal of 218, half the House by 
Mother's Day, and I think we started the date--the day before 
we broke with, what was it, Anna, something about 170, we got 
40 or 50 that last day. So it was great work, we got over our 
goal for Mother's Day. It would be a great Mother's Day gift 
for us to be able to deliver this piece of legislation for 
women.
    Thank you, Mr. Chairman.
    Mr. Bilirakis. Thank you. It is not easy to say no to Anna 
Eshoo. I will verify that.
    Mr. Brown.
    Mr. Brown. Thank you, Mr. Chairman. I would like to thank 
you for arranging today's hearings and congratulate Ms. Eshoo 
and Mr. Lazio for their hard and very effective work on behalf 
of this issue. In 1990, Congress passed the Breast and Cervical 
Cancer Mortality Prevention Act. That bill authorized funding 
for national breast cancer and cervical cancer screening 
program, focusing on uninsured and underinsured women.
    The program is federally funded and locally operated in the 
States. My home State of Ohio has 12 local screening sites 
providing coverage from all 88 counties. Since the Ohio 
program's inception 16,000 women have been screened for breast 
and cervical cancer and cancer has been detected in more than 
200 women. Early detection, as we all know, can alter the odds 
of successful treatment, dramatically restoring precious years 
otherwise lost to these devastating cancers.
    But there is a catch. Early detection is a futile and 
ultimately cruel exercise if a cancer diagnosis does not 
trigger appropriate treatment. The two obviously go hand in 
hand. The 1990 bill authorized funding for screening but not 
for treatments. Instead it calls on States to secure treatment 
for women diagnosed with cancer under the screening program. 
But as it turns out, the onus responsibility has fallen on the 
local screening programs.
    Staff at the screening sites typically do two jobs, 
arranging screenings and trying to convince doctors and 
hospitals to provide free cancer care to patients. This is a 
labor intensive hit or miss effort that places an immense 
burden on screening programs with no guarantee that women will 
receive timely care on a consistent basis. And the health care 
system shaped by the managed care industry providers inevitably 
more and more every year will have less flexibility to offer 
their services and their time for free.
    The Federal Government invested $158 million in the breast 
and cervical cancer screening program in fiscal year 1999, yet 
we are only reaching up to about perhaps 15 percent of the 
target population. And when the women we have invested in are 
diagnosed with cancer, our commitment to them unfortunately has 
ended.
    CDC cancer screening resources should be used to provide 
cancer screening. Health care resources should be used for 
health care, and that is where Medicaid comes in. The title of 
the original authorization is the Breast and Cervical Cancer 
Mortality Prevention Act, but mortality prevention requires 
screening and treatment. H.R. 1070 would fill in that gap. It 
would establish a modest optional Medicaid enabling the Federal 
Government to contribute to the costs of providing proper care 
for these women.
    By freeing up screening program resources and eliminating 
the uncertainty around treatment for women screened under the 
CDC program, H.R. 1070 would permit the Nation to achieve the 
full public health potential of the breast and cervical cancer 
screening program. We need to fight breast and cervical cancer 
with every weapon available to us. Early detection and 
immediate, proper health care are the strongest weapons we 
have.
    I hope, Mr. Chairman, we will mark up and vote on this bill 
as quickly as we possibly can.
    Mr. Bilirakis. Thank you. The gentleman's time is expired. 
Mr. Bryant.
    Mr. Bryant. Thank you, Mr. Chairman. Thank you for 
scheduling this hearing. And as we all know, the Breast and 
Cervical Cancer Mortality Prevention Act of 1990 does not 
authorize the CDC to pay for treatment of breast and cervical 
cancer. However, as a condition of participation in the 
screening program, CDC requires that a participating State, 
territory and tribal program certify that the treatment will be 
offered to all women who have been diagnosed with cancer 
through this program.
    CDC does not believe that any women are failing to receive 
treatment under the program. According to Dr. Lee, the director 
of the screening program at CDC, participating governments are 
required to initiate treatment within 30 days. According to 
CDC's data, a set of some 2 million women screened, 90 percent 
of the women initiate treatment within 10 days of diagnosis, 
well within the required 30-day period.
    Also according to CDC, participating State programs have 
been determined and creative in ensuring that treatment 
services are available for women diagnosed with breast cancer 
or cervical abnormalities.
    The availability of treatment sources reflects the extent 
of the State and local government support, the generosity of 
medical providers and the commitment of communities.
    With those statements, I will say also that I am very 
pleased to sit next to Mr. Lazio and with his introduction of 
this bill. And I think this discussion that we have heard 
briefly through some of the statements of Dr. Lee, together 
with Mr. Lazio's bill, certainly give us an opportunity to 
really listen carefully today to what all the witnesses have to 
say. I for one am very excited and interested to hear all of 
these witnesses, because I think we need to learn more about 
this and I think react very quickly.
    But again I look forward to especially Dr. Lee's testimony, 
representing the CDC today, but, again, thank Mr. Lazio for his 
good bill, and I would yield back my time.
    Mr. Bilirakis. I thank the gentleman. Mr. Dingell an 
opening statement.
    Mr. Dingell. Mr. Chairman, thank you. First, I wish to 
thank you for holding this hearing on H.R. 1070, the Breast 
Cancer and Cervical Cancer Treatment Act of 1999. Its principal 
sponsors, Mr. Lazio and Ms. Eshoo, deserve particular 
commendation. Certainly Ms. Eshoo has demonstrated remarkable 
leadership and commitment in the sponsorship of this bill, 
which now boasts a total of 260 cosponsors.
    Her persistence and effort have led directly to this 
hearing today, and I think we should salute her for it. All of 
us are familiar with personal stories of women who have 
suffered from breast or cervical cancer, and we are aware of 
the difficult and painful process these women face upon 
learning their diagnosis.
    As someone who has lost family and friends to this terrible 
condition, I can well appreciate how all must feel. Imagine how 
much more difficult the situation is for a woman who has been 
diagnosed with breast or cervical cancer but doesn't know when, 
where or how she will obtain the needed medical treatment to 
save her life because she has no health insurance.
    These women are forced to expend precious energy searching 
for doctors and hospitals willing to accept their charity case 
instead of focusing on getting well. In today's health care 
system, which is dominated by managed care and fiscal 
constraints, there is no guarantee whatsoever that these women 
or anyone else who is uninsured will be able to obtain 
uncompensated care.
    This legislation is a very important step in response to 
the need of uninsured women diagnosed with breast and cervical 
cancer. I urge speedy action so that we can help minimize the 
fear and uncertainty that these women face each day in finding 
someone to help them with the payments for their treatment.
    I thank you, Mr. Chairman, and I yield back the balance of 
my time.
    Mr. Bilirakis. I thank the gentleman. Let us see. Dr. 
Coburn.
    Mr. Coburn. Thank you, Mr. Chairman. This is an issue that 
I have both a tremendous professional involvement in but also 
personal involvement. Every family in this country is or will 
be touched by breast cancer and early diagnosis does not always 
make the difference unfortunately. This bill that Ms. Eshoo, 
Mr. Lazio have put together is a necessary bill. I have some 
concerns about the bill that I have addressed with Mr. Lazio in 
terms of the abuse of the insurance industry using title XIX 
now for pregnancy, that I want to make sure is not available to 
be abused under title XIX as we go forward with this bill.
    But even more than that, I am angry with the CDC because 
they have done nothing to prevent cervical cancer. They help 
diagnose it, but 94 percent of all cervical cancer is 
associated with human papilloma virus, which is not a 
reportable disease and they have refused to make it such.
    They have refused to educate the American public on this 
disease. They have refused to admit that a condom offers no 
protection for it. They have refused to do what their charge 
is, to prevent this disease. And although not nearly so many 
women die from cervical cancer as do from breast cancer, the 
trauma, the procedures that they must go through and the long-
term sequela are oftentimes just as great and just as 
emotionally debilitating.
    So I look forward to talking with Dr. Lee about that issue. 
I am supportive of this bill with the changes that I hope can 
be made to it. And I am hopeful that we will continue to treat 
not just breast cancer and cervical cancer, but all the other 
maladies that we can prevent for those that don't have access, 
that we can make access available to them. And with that, I 
would say that I would hope that this full committee and the 
Subcommittee on Health will give great credence to John 
Shadegg's bill on access to care, because it has been estimated 
to increase insurance coverage for 7 to 12 million people today 
who do not have coverage.
    And I would just like to finish with a tribute to a lady by 
the name of Sharon Wetz. She was diagnosed with breast cancer, 
early diagnosis, in 1980. She had no metastases. She had a 
modified radical breast dissection, and two summers ago had a 
recurrence of her disease and had every available treatment 
offered today. She died 2 months ago. Ironically, she spent her 
whole life helping women with breast cancer before she was 
diagnosed. This is a disease we must beat.
    And I thank you, Mr. Chairman.
    Mr. Bilirakis. I thank you, Dr. Coburn. Ms. Eshoo.
    Ms. Eshoo. Thank you, Mr. Chairman. First I want to express 
my deep appreciation to you for holding this hearing on the 
bill and for your cosponsorship. Both are very, very important 
signals, not just within the Congress, but across the country 
to so many that want and need to have something done. So I want 
to pay tribute to you first and equal tribute to my colleague, 
Rick Lazio, because he was the first one to step up to home 
plate. He then came and found me, and off we went.
    I would also like to pay tribute to all of the members of 
the subcommittee and members of the full committee who are 
cosponsors of H.R. 1070. About 75 percent of members of both 
are cosponsors of this bill. So there is solid support from 
both sides of the aisle. And I think that when we craft 
something together, that it not only gives increasing hope to 
the American people, but it fuels the effort because it is not 
easy to get something through the Congress of the United 
States.
    I also want to pay tribute to all of the organizations that 
have come in and around this, that have helped with the bill, 
that have met with members. Whether they have endorsed the bill 
or not, they have still been partners with us. And to that end, 
Mr. Chairman, I would like unanimous consent to submit for the 
record of this hearing organizations that have written letters 
of endorsement. There are many. The American Cancer Society, 
National Women's Health Network, the Maine Breast Cancer 
Coalition, the County of San Mateo California, the San Mateo 
Health Services Agency of California, the California Breast 
Cancer Organization, the Cancer Research Foundation of America, 
the National Association of Public Hospitals and Health Systems 
and the California Association of Public Hospitals and Health 
Systems.
    Mr. Bilirakis. Without objection.
    [The following was received for the record:]

                            American Cancer Society
                       National Government Relations Office
                                                     March 18, 1999
The Honorable Rick Lazio
United States House of Representatives
Washington, DC 20515

The Honorable Anna Eshoo
United States House of Representatives
Washington, DC 20515
    Dear Representatives: The American Cancer Society, representing 
more than 2 million volunteers, supports the Breast and Cervical Cancer 
Treatment Act of 1999. We appreciate your sponsoring this important 
legislation which will allow states the option of providing Medicaid 
coverage for breast and cervical cancer-related treatment services to 
women who have been diagnosed with breast and cervical cancer through 
the National Breast and Cervical Cancer Early Detection Program.
    Breast and cervical cancer will kill more than one-half million 
women in the 1990's. Almost all deaths from cervical cancer and more 
than 30% of deaths from breast cancer in women over age 50 could be 
prevented by early detection (through widespread use of Pap tests and 
mammograms) and prompt treatment.
    Since the inception of this program, more than 1.5 million 
screenings have been provided to eligible women resulting in the 
diagnosis of more than 3,600 women with breast cancer, approximately 
26,000 women with cervical neoplasia, and over 400 women with invasive 
cervical cancer.
    Through March of 1996, approximately 96% of the women diagnosed 
with cancer as a result of the program had initiated therapy. States 
have creatively developed or funded a variety of creative approaches to 
treatment, blending together a range of strategies that include use of 
public hospitals, access to county indigent care funds, access to 
hospital community-benefit programs, provider generosity, and 
individually negotiated payment plans.
    As the States screen more women, and more cancers are diagnosed, 
ensuring care for all who need it will place increasing stress on 
fragile and overburdened treatment systems. Long term solutions for 
ensuring treatment are needed. By setting up a treatment option, this 
legislation will free up resources (time and money) so that case and 
program managers can focus efforts on bringing more women into the 
program to take advantage of early cancer screenings.
    In the meantime, the NBCCEDP must continue to reach out to women 
who do not routinely seek health care services and may only be reached 
by the services offered under this important program. State programs 
are reaching only 12-15% of the women eligible for services in each 
state. All women in this country deserve access to quality health care. 
We must fund NBCCEDP at $215 million and pass your important 
legislation if we are to move toward that goal.
    We applaud your efforts to address this serious health care 
challenge and look forward to working with you to secure passage this 
year.
            Sincerely,
                                           Kerrie B. Wilson
                           National Vice-President, Policy Advocacy
                                 ______
                                 
                            National Women's Health Network
                                                     March 17, 1999
The Honorable Anna Eshoo
U.S. House of Representatives
Washington, DC 20515
    Dear Representative Eshoo: I am writing to thank you for your 
sponsorship of the Centers for Disease Control and Prevention (CDC) 
Breast and Cervical Cancer Treatment Act. The National Women's Health 
Network has endorsed the bill because we believe it will offer critical 
access to services for uninsured women with breast and cervical cancer.
    As you know, the CDC Early Detection Program screens tens of 
thousands of women for breast and cervical cancer each year. It is an 
important contribution to the health of women in this country, but 
screening is only the first step for women who receive a cancer 
diagnosis. What those women must face next is cancer treatment, and 
women who do not have health insurance face a battle to find a way to 
pay for their treatment. The Breast and Cervical Cancer Treatment Act 
will ensure that women who are diagnosed with cancer through the CDC 
Early Detection Program have access to the treatment services they 
need. It will ensure that the U.S. government does not provide a woman 
with a diagnosis of a life-threatening illness and then abandon her, 
without access to health care, to deal with the consequences on her 
own.
    The National Women's Health Network is an independent, member-
supported organization dedicated to safeguarding women's health rights 
and interests. The Network advocates for better policies on women's 
health and provides women with information and resources to assist them 
in making better health care decisions. Nationwide, the Network has 
more than 12,000 individual members and 300 organizational members.
    The Network is pleased to have the opportunity to work with you to 
gain the support of your colleagues and to achieve passage of the CDC 
Breast and Cervical Cancer Treatment Act. Thank you again for your 
vision and your leadership on behalf of the health of U.S. women.
            Sincerely,
                                            Cynthia Pearson
                                                 Executive Director
                                 ______
                                 
                              Maine Breast Cancer Coalition
                                                     March 29, 1999
The Honorable Anna Eshoo
U.S. House of Representatives
Washington, DC 20515
    Dear Representative Eshoo: The Maine Breast Cancer Coalition 
strongly endorses the Medicaid Breast and Cervical Cancer Treatment 
Act, H.R. 1070. This proposed legislation will provide a critically 
important treatment program to the CDC Breast and Cervical Cancer Early 
Detection Program.
    The Maine Breast Cancer Coalition thanks you for all your efforts 
on behalf of our mission to eradicate breast cancer. We look forward to 
your continued support and appreciate your dedication to this issue.
            Sincerely,
                                         Linda J. Morneault
                                                    President, MBCC

                                        Laurel Bezanson    
                                       Advocacy Chair, MBCC
                                             NBCC State Coordinator
                                 ______
                                 
                                County of San Mateo
                                       Board of Supervisors
                                                      July 13, 1999
Honorable Anna Eshoo
14th Congressional District
205 Cannon House Office Building
Washington, D.C. 20515
    Dear Congresswoman Eshoo: On behalf of the San Mateo County Board 
of Supervisors congratulations on your great success in securing a 
hearing to extend Medicaid coverage to the uninsured working and poor 
women for breast and cervical cancer treatment. We applaud your 
tenacity and your commitment to bring forward this important health 
care policy.
    As you know, in California approximately 5,000 women will die of 
breast cancer and nearly 20,000 new cases will be diagnosed in 1999. 
What's more, it is reported that in California the highest incidence of 
breast cancer is found in Anglo-women, yet the highest mortality rate 
occurs among African-American women and the largest percentage of late-
stage diagnosis occurs among Latino and African-American women. All of 
the increased funding directed at prevention, education and early 
detection is lost when not accompanied by access to treatment.
    The San Mateo County Board of Supervisors is pleased to provide you 
with any information, documentation or data that you deem useful to you 
at the July 21, 1999 House Commerce Committee, Subcommittee on Health 
and the Environment.
    If there is any beneficial experience that can be found in San 
Mateo County's long-history of providing health care to thousands of 
uninsured and underinsured working and poor through the San Mateo 
County General Hospital, our system of community-based clinics or the 
provision of the San Mateo County Health Plan, that will assist you in 
making the case to extend Medicaid coverage for the treatment of breast 
and cervical cancer, please do not hesitate to contact me. The Board of 
Supervisors enthusiastically extends the County's resources and 
appropriate expertise to the success of your effort. We look forward to 
working with you on this important issue.
            Sincerely,
                                         Rose Jacobs Gibson
                                            4th District Supervisor
cc: Honorable Members, Board of Supervisors
   Karen Chapman, District Chief-of-Staff, Congresswoman Eshoo's Office
   John Maltbie, County Manager
   Mary McMillan, County Legislative Director
   Margaret Taylor, County Health Services Director.
   Frank Gibson, Hospital Consortium
                                 ______
                                 
                             Health Services Agency
                                        County of San Mateo
                                                       July 7, 1999
Honorable Anna Eshoo
14th Congressional District
699 Emerson Street
Palo Alto, CA 94301
    Dear Congresswoman Eshoo: I want to thank you for your 
extraordinary efforts to allow women suffering from breast or cervical 
cancer to receive Medicaid coverage. On behalf of the staff and 
patients at San Mateo County General Hospital and Clinics, I want to 
let you know how much we support this proposed legislation.
    San Mateo County is comprised of a large number of residents who 
lack health insurance. Many of these individuals are the working poor 
who earn either too much money to qualify for Medi-Cal or too little 
money to pay for private insurance. This lack of coverage and resources 
has become particularly worrisome for our female residents who develop 
breast or cervical cancer. These women delay physical check ups and 
treatment due to their inability to pay. By allowing these women to 
receive Medicaid coverage, they will have a chance to seek the 
treatment they need to combat this terrible disease.
    Adoption of this legislation would be very beneficial to the 
communities we serve.
    Thank you for all your hard work and dedication to undeserved women 
in this county.
            Sincerely
                                           Margaret Taylor,
                                   Director, Health Services Agency
cc: Hospital Board of Directors
   Mary McMillan, Legislative Director
                                 ______
                                 
                     California Breast Cancer Organizations
                                                     April 21, 1999
The Honorable Duncan Hunter
2265 Rayburn HOB
Washington, DC 20515-0552
    Dear Congressman Hunter: The California Breast Cancer Organizations 
(CABCO) was started in 1991 by women with breast cancer. Since then, 
CABCO has provided a forum for individual organizations to come 
together to represent thousands of breast cancer survivors, their 
families and friends. CABCO member organizations inform, support, and 
advocate to better the health of California women diagnosed and living 
with breast cancer.
    CABCO member organizations, representing many of your constituents, 
is hereby urging you to join your colleagues from California and over 
100 members of Congress and be a cosponsor for the Breast and Cervical 
Cancer Treatment Act (H.R. 1070). For your information, we have 
enclosed a copy of the letter.
    Take action now and give the gift of life to women around the 
country by cosponsoring this very important legislation. Call 
Congresswomen Eshoo (202-225-8104) or Capps (202-225-3601) and 
Congressman Brian Bilbray at (202-225-2040) to include your name NOW.
    We cannot afford to screen underserved and underinsured women and 
men for life-threatening diseases without finishing the job--this means 
establishing a treatment program that will assure them of access to the 
necessary medical care to treat their disease. It is unconscionable and 
inhumane to screen for a disease like breast cancer, be diagnosed with 
it and be told, ``Sorry, but we don't have a treatment component to 
this program. You are on your own.'' How would you like to be one of 
them?
                                 ______
                                 
              Cancer Research Foundation of America
                                              Alexandria VA
                                                     March 19, 1999
Congresswoman Anna Eshoo
205 Cannon House Office Building
Washington, DC 20515
    Dear Congresswoman Eshoo: On behalf of the Cancer Research 
Foundation of America (CRFA), I would like to express my strong support 
for H.R. 1070, legislation to provide treatment assistance for women 
without health insurance diagnosed with breast or cervical cancer under 
a federally funded screening program.
    As a Foundation that funds several local programs to screen women 
for breast and cervical cancer, including the George Washington 
University Mobile Mammography Van and Celebremos La Vida!, we feel 
strongly that treatment of any cancer detected through our programs 
must be offered if the woman does not have health insurance available 
to her.
    We strongly support the legislation that you have introduced, which 
will apply these same standards to the Centers for Disease Control and 
Prevention breast and cervical cancer early detection program.
    CRFA would be pleased to work with you and your staff towards 
passage of this important legislation. Please do not hesitate to call 
on Lisa Hughes, or me at 703-836-4412 if we can be of assistance.
            Sincerely,
                                             Carolyn Aldige
                                              President and Founder
                                 ______
                                 
  National Association of Public Hospitals & Health Systems
                                                     March 16, 1999
The Honorable Anna Eshoo
The United States House of Representatives
Washington, DC 20515
    Dear Anna: I am writing on behalf of the National Association of 
Public Hospitals & Health Systems (NAPH) to express our support for 
H.R. 1070, which would provide Medicaid coverage for uninsured low-
income women screened and found to have breast or cervical cancer under 
the CDC's screening program. NAPH represents over 100 metropolitan area 
safety net hospitals and health systems. As safety net institutions, 
our members are essential providers of care to uninsured and vulnerable 
populations whose access would otherwise be severely constricted. Over 
65 percent of the patients served by these systems are either Medicaid 
recipients or Medicare beneficiaries. Another 25 percent are uninsured.
    NAPH strongly supports all efforts to expand health care coverage 
for America's uninsured. Under present law, the CDC's early detection 
program provides a critical service in identifying women who have 
cancer and require treatment. However, without coverage for such 
treatment, uninsured women who know they have cancer face difficult 
barriers in receiving and paying for treatment for their condition. 
Your proposed legislation would directly address this issue by 
providing health coverage for low-income women diagnosed with breast or 
cervical cancer who do not otherwise have health coverage. This would 
greatly enhance the effectiveness of the CDC program and provide a 
great benefit for uninsured women with a serious medical condition.
    We look forward to working with you further to develop legislative 
solutions to the problems of our nation's poor and uninsured. If you 
have questions about this letter, please contact Charles Lubinsky at 
202/624-7215.
            Sincerely,
                                              Larry S. Gage
                                                          President
                                 ______
                                 
     California Association of Public Hospitals and Health 
                                                    Systems
                                                      July 19, 1999
The Honorable Anna Eshoo
205 Cannon House Building
Washington, D.C. 20515
    Dear Representative Eshoo: On behalf of the California Association 
of Public Hospitals and Health Systems, I would like to express our 
strong support of your legislation, H.R. 1070. This bill would give 
states the option to provide Medicaid coverage to uninsured women who 
have been diagnosed with breast or cervical cancer through the National 
Breast and Cervical Cancer Early Detection Program.
    Studies have shown that routine screening for breast and cervical 
cancer coupled with timely treatment can reduce deaths from breast 
cancer by 30% and can almost entirely prevent the onset of cervical 
cancer. As public health care providers, our members screen thousands 
of low-income women each month for breast and cervical cancer. While 
California has implemented a very effective screening program through 
the CDC-funded Breast and Cervical Cancer Control Program as well as 
through a state-funded program, there are far fewer resources available 
to finance treatment for low-income uninsured women, once they've been 
diagnosed. Since 1991, more than 1,100 low-income women have been 
diagnosed with breast or cervical cancer and referred for treatment, 
although most had no way to pay for their care.
    California has attempted to address this problem by creating a 
Breast Cancer Treatment Fund, which is supported by private foundation 
and state general fund dollars. However, this is not a permanent 
program, and it has been at risk of being de-funded in each of its two 
years of operation. A total of 411 women have received assistance 
through the Fund, with grants averaging $7,623 per case, although these 
grants often do not cover the full range of services needed by women. 
Unfortunately, there is no similar statewide treatment program for low-
income women with cervical cancer.
    As a result, many of these uninsured women seek care from our 
county hospitals, often times at a later stage of disease than if 
health insurance coverage were available to pay for their treatment. 
Enabling low-income women who have been diagnosed with breast or 
cervical cancer to become eligible for Medicaid would help ensure that 
they receive timely treatment, which is essential for a successful 
outcome. Moreover, such coverage would help cover significant 
unreimbursed costs incurred by county hospitals in California in 
providing such treatment. As you know, our hospitals are already 
stretched tight due to shrinking indigent care funding and the growing 
number of uninsured in California.
    We applaud your efforts in authoring this important bill and your 
ongoing leadership regarding all health issues, particularly for low-
income populations.
            Sincerely,
                                           Denise K. Martin
                                                    President & CEO
cc: CAPH Board Members

    Ms. Eshoo. Thank you. As Mr. Lazio explained just a few 
minutes ago, when we held our press conference in the Capitol 
to announce the introduction of our bill, we were very, very 
proud that day. I think that there were something like 50 or 60 
cosponsors of the bill. We did make a promise that we would do 
everything that we could to secure the majority of the House of 
Representatives by Mother's Day, because we wanted to continue 
to send out a signal of some hope in the country. When all is 
said and done, truth be known, this is not a large bill, this 
is not a bill that is directed toward curing breast and 
cervical cancer.
    It doesn't make a gigantic promise to people across the 
country, so we need to keep it in context. And you may be 
surprised that as the original Democratic cosponsor that I am 
saying this. But I do think that within that context that we 
need to develop the political will to get this done. We should 
not be in the business of saying that we will only go halfway 
with people. The Federal Government, through an excellent 
program that it directed the CDC to undertake, the program of 
screening, was established by the Congress before either Mr. 
Lazio or I arrived in the House of Representatives. We are 
going to hear more about that.
    We need to take the next step. We shouldn't be in the 
business of saying to women and their families, you don't get 
treatment because you are underinsured or uninsured. We all 
have these women in our districts. And with all due respect to 
the agencies that implement the programs who are our partners 
in public service, we play a different role in America. Why? 
Because we are with our constituents every week.
    I fly across the country to California, as my colleagues 
fly or drive or take the train to their districts, and I know 
what my constituents say to me. This is not something that is 
fabricated. They have needs, and they come to us as their 
representatives, not only to be their eyes and ears, but to 
take action on their behalf.
    I think the greatest, most powerful nation on the face of 
this Earth can do better. We can do better, and we should do 
better, and we should stand next to these families that really 
need the kind of help and not take them halfway and go the 
entire route.
    There is someone--Mr. Chairman, I request just a minute 
longer.
    Mr. Bilirakis. Without objection.
    Ms. Eshoo. Thank you very, very much. I have pages here of 
statistics that I will submit with my formal statement. I would 
like to point out that there is someone here this morning that 
the National Breast Cancer Coalition was very generous in 
helping to come to Washington. She is seated in the second row, 
and her name is Josefina Mondada from Texas.
    She was diagnosed in September 1998. She was working but 
uninsured. She discovered a lump and she was screened. The 
diagnosis informed her that she had cancer and needed 
treatment. There was one doctor 1 hour away from her. There 
were a few more doctors 5 to 6 hours away from her. She took 
care of her ill husband, which is very often the case with 
American women. When we take something new on, we don't give up 
other responsibilities, which makes it all the more difficult 
for women to take on that additional responsibility.
    So, Josefina, thank you for coming all the way to 
Washington. I think that you are a very powerful presence for 
many women and their families around the country.
    And, Mr. Chairman, I hope that after today's hearing that 
we will continue to demonstrate our political will to take a 
very important small bill and an even larger step forward in 
fighting breast and cervical cancer.
    Yesterday I believe was the 30th anniversary of placing the 
first man on the moon. Now if we could do that 30 years ago, we 
sure as hell can do this one in the Congress in this session. 
So I want to thank all of my colleagues for what they have 
chosen to do. I will do everything that I can to work with 
anyone that has questions about how we can do this even better. 
But I think that we need to do it. So I know I don't have any 
time left to relinquish, but I thank you for giving me the 
additional time.
    Mr. Bilirakis. I thank the gentlelady.
    Mr. Waxman.
    Mr. Waxman. Thank you very much, Mr. Chairman. I am 
extremely pleased that this subcommittee is having this hearing 
today. I am a proud cosponsor of the Lazio-Eshoo bill. I 
strongly support it. I chaired this subcommittee when we 
originally passed the breast and cervical cancer screening 
program. It was an important step forward, and I believe it has 
been a real success story. But now the time has come to take 
the additional step of providing Federal support through the 
Medicaid program to secure the necessary treatment and follow-
up services to those women who have breast or cervical cancer 
uncovered through this very same screening program.
    Let me say that I think CDC and its grantees have done a 
yeoman's job of responding to the directive in the law that 
they arrange for services for women who have breast or cervical 
cancer discovered through the screening, but this is far from 
ideal as a way of assuring these women services. Depending on 
the availability of charity care to see that these conditions 
are treated is necessarily going to be a difficult process, and 
we run the serious risk that it will be inadequate to the 
problem.
    We subject these women to the trauma of the uncertainty of 
whether care will be available. We run the risk that follow-up 
treatment does not occur. We probably even lose some people who 
are reluctant to be screened when they know they do not have 
insurance if treatment is needed. This bill would change that, 
and it makes a great deal of sense to me. It gives the States 
the option to extend Medicaid coverage to the women when cancer 
is discovered.
    It says that the Federal Government will be a partner in 
paying for their treatment. I know every one of us in 
Washington shares the feeling of frustration when we have to 
try to explain to our constituents why we have a program that 
defies common sense. How can we screen women for these 
conditions and then when we find them fail to pay for the care 
that is needed?
    When we developed the screening program, that was all we 
could do. But we took the first steps. It remains a law that I 
am proud of. Now nearly a decade has passed since that landmark 
bill. We know screening for this population works. Surely the 
time has come to take the next step and pay for treatment 
services. Let us rationalize our policy and do the right thing.
    Thank you, Mr. Chairman.
    Mr. Bilirakis. I thank the gentleman.
    Mr. Green, an opening statement.
    Mr. Green. Thank you, Mr. Chairman. And like my colleagues 
I am proud to be a cosponsor of H.R. 1070, the Breast and 
Cervical Cancer Treatment Act, and as of today we have 263 
cosponsors, which is a credit not only to my colleague from New 
York, but also to my colleague from California. When Congress 
passed the Breast and Cervical Cancer Mortality Prevention Act 
in 1990, we only did part of the job. As we learned, screening 
for cancer is only useful if there is a treatment available to 
back it up.
    And while statistics show that treatment has been available 
to most of the women who have been screened through the early 
detection program, I think the broad support of this bill 
demonstrates the need to improve this critical phase. Some 
problems with the existing program include long waiting times 
for treatment, which can be life threatening, inconsistency of 
care and dwindling resources of physicians who are willing or 
can afford to continue to donate their services.
    Moreover, the mental strain on a family when a loved one is 
diagnosed with cancer is simply overwhelming. To add the 
uncertainty of not knowing where to find or if you will find 
treatment is just too much to put on these families. H.R. 1070 
will solve some of these problems, as my colleagues have said, 
by working for women diagnosed with breast or cervical cancer 
through the early detection program eligible for Medicaid for 
the duration of their treatment.
    And I think it is appropriate on a day when the House is 
going to consider an $800 million tax cut bill, hopefully we 
can afford to pass this legislation.
    Thank you, Mr. Chairman. I yield back my time.
    Mr. Bilirakis. I thank the gentleman. Dr. Ganske, do you 
have an opening statement?
    Mr. Ganske. No, Mr. Chairman.
    Mr. Bilirakis. Mr. Barrett, do you have an opening 
statement.
    Mr. Barrett. I do not.
    [Additional statements submitted for the record follow:]
Prepared Statement of Hon. Cliff Stearns, a Representative in Congress 
                       from the State of Florida
    Mr. Chairman, thank you for holding this hearing today on H.R. 
1070, legislation to provide medical assistance for certain women 
screened and found to have breast or cervical cancer under the Center 
for Disease Control's Early Detection Program.
    As we know, breast cancer is both scary and frightening to many 
women. Tragically, this disease strikes one out of every eight women 
today. Less than a decade ago it was one out of every ten women. We 
must find a way to eradicate this disease which causes women so much 
trauma in their lives. The physical and emotional pain is practically 
unequaled.
    The statistics bear out why this disease is so dreaded. This year 
alone there will be an estimated 175,000 new cases diagnosed and more 
than 43,000 women will die as a result of this dreaded disease.
    The Center for Disease Control has classified breast cancer as a 
chronic epidemic. If detected early, the survival rate is almost 100%. 
We need to make early detection a top priority.
    When we think about the various cancers that can afflict women, we 
rarely focus on cervical cancer. Yet, 2-3 percent of all women over the 
age of 40 will develop some form of cervical cancer. That translates to 
about 5,000 deaths per year.
    The good news is that routine pap smears are very effective in 
detecting abnormal cells and if detected in time can be treated with 
promising results. Because there are no discernible symptoms in the 
early stages, it is vital that women see their physician on an annual 
basis since early intervention with proper treatment can save 80% of 
women. Once this disease progresses and spreads to other organs the 
survival rate drops significantly.
    We know from data provided by CDC that 90 percent of women screened 
initiated treatment within 10 days of diagnosis which is well under the 
required 30 day period.
    I look forward to hearing from our witnesses about the merits of 
expanding coverage under this program to women who are not poor enough 
to qualify under Medicaid and too young to qualify under Medicare.
                                 ______
                                 
 Prepared Statement of Hon. Tom Bliley, Chairman, Committee on Commerce
    Thank you, Chairman Bilirakis, for this important hearing this 
morning on Mr. Lazio's bipartisan proposal to expand Medicaid coverage 
to those women who have been screened and diagnosed to have breast or 
cervical cancer through the National Breast and Cervical Cancer Early 
Detection Program, which is administered by the Centers for Disease 
Control and Prevention.
    As many of you know, breast and cervical cancer is a matter of 
great concern to me. My wife is a breast cancer survivor. In the last 
Congress, I worked with Chairman Bilirakis to pass The Mammography 
Quality Standards Reauthorization Act of 1998, which now requires that 
written notification of test results be sent directly to the patient. 
We have encouraged mammography facilities to urge their patients to 
follow up with their own physicians.
    We also successfully bolstered the CDC breast and cervical cancer 
screening program by enacting into law the Women's Health Research and 
Prevention Amendments of 1998, which authorizes CDC to increase its 
assistance to state, territorial, and tribal governments for case 
management services. Since CDC requires that all the women screened 
with cancer will be offered treatment in their own states, I believe 
that this new authority will help many uninsured women in this program 
more quickly find treatment in their community.
    As we listen to the testimony today, let me remind my colleagues 
that the core matter before us is the fact that all of the women in 
this program are uninsured. If we can move on market-based reforms in 
this Congress on a bipartisan basis, we will be helping those women who 
are presently covered by the CDC screening program. Let me also remind 
us all of a few facts about the uninsured:
 The quality and affordability of health coverage for all 
        Americans is directly linked to consumers exercising choice in 
        the health care market place. We should not assume there has to 
        be a trade-off between having quality health coverage and 
        affordable health coverage--you marry quality and affordability 
        when you seek value, which is the best possible coverage and 
        the best price.
 Mandates on health insurance add costs to premiums and may 
        have the unintended consequence of impeding access to necessary 
        health coverage for many Americans, just as many women who 
        discover they have cancer are without insurance coverage.
 We also know that the tax code discriminates against the 
        waitress at the comer diner and the sales clerk whose employers 
        are unable to provide them with health coverage. Employer-
        purchased health coverage is 100 percent tax free to the 
        employer and employee, but you are out of luck if your employer 
        cannot provide you that coverage.
    What many Americans are missing today is a place to shop for 
affordable health coverage that meets the needs of their families.
    The goal of my HealthMart proposal, which I am working with the 
minority to enact into law, is to give employees options within today's 
job-based health care system. To do so, however, we must address the 
impediments in the marketplace that add cost and make it difficult for 
the small business person to afford coverage for his or her employees.
    As we listen to the testimony today,, I ask my colleagues to 
consider not only the reforms that may be necessary to the CDC breast 
and cervical cancer screening program, but also for the need to enact 
HealthMarts and other market reforms to increase affordable insurance 
coverage for all Americans.
                                 ______
                                 
Prepared Statement of Hon. Diana DeGette, a Representative in Congress 
                       from the State of Colorado
    Thank you Mr. Chairman. As a cosponsor of H.R. 1070, I want to 
thank you for holding today's hearing on this important legislation. I 
appreciate your leadership on this issue, and look forward to working 
with the majority to mark-up this bill. I would also like to thank my 
colleagues Ms. Eshoo and Mr. Lazio for their tireless leadership on 
behalf of this legislation.
    Since the inception of the Center for Disease Control's National 
Breast and Cervical Cancer Early Detection Program, over 1.2 million 
women have been screened for these diseases. In my home state of 
Colorado, 28,300 women received mammograms and the program provided 
37,056 pap tests. Despite these achievements, the program is still only 
able to reach 15 percent of the eligible population. This number is 
unacceptable. We would never accept that only 15 percent of our 
children were vaccinated by a public health campaign and we should not 
be satisfied that only 15 percent of women are being screened for 
breast and cervical cancer. This program MUST grow and H.R. 1070 would 
enable it to do so.
    This Committee must be pro-active. The success of the Early 
Detection Programs illustrates the critical role public health programs 
play in low-income communities. At a time when health care disparities 
are widening on racial lines, these programs have eliminated the 
disparities between black women and white women in terms of breast and 
cervical cancer screening. By detecting breast and cervical cancer 
early, the screening program saves lives and health care costs. A women 
participating in an Early Detection Program has a better chance of 
beating her cancer at a much lower personal and financial cost. If she 
were not screened through the CDC program, she would be diagnosed, most 
likely but much later, after her disease had progressed to a much more 
disabling point. Treatment would be much more costly, and most 
importantly, she would be at much greater risk of dying from her 
disease.
    The program is a victim of its own success which illustrates the 
need to expand the program to include coverage for treatment once a 
cancer is detected. Ninety percent of all women diagnosed with cancer 
under this program receive treatment because many state programs have 
been creative in ensuring that treatment services are available for 
these women. Often, these women rely on the resourcefulness of the 
screening program's employees and the generosity of doctors and their 
communities to receive the treatment they need. This is a tenuous 
system at best and, states will only be able to ``shake the tin cup'' 
for so long. As more women are screened by the National Breast and 
Cervical Cancer Early Detection Program, it will be more difficult for 
women to obtain the treatment they need.
    It is time for Congress to act and ensure that any woman found to 
have cancer under this program would have access to treatment. Now, 
women who need and want cancer treatment receive it. However, Congress 
must be foresighted. Without a guaranteed treatment option, screening 
programs will have to devote more of their resources to locating 
treatment options, which means fewer women will be screened. This is 
clearly the wrong direction since only 15 percent of eligible women are 
being screened currently.
    I look forward to today's hearing and to working with this 
Committee to ensure that we pass legislation, which will strengthen the 
National Breast and Cervical Cancer Early, Detection Program. I yield 
back the balance of my time.

    Mr. Bilirakis. All right, thank you. I think that takes 
care of the opening statements. Of course, as per usual, the 
opening oral statements and written statements of all members 
of the subcommittee are made a part of the record.
    Now we will call the first panel, which consists of Dr. 
Nancy C. Lee, Director of the Division of Cancer Prevention and 
Control, Centers for Disease Control in Atlanta, Georgia.
    Dr. Lee, as I said earlier, we welcome you here. Nice to 
see you in our bailiwick, as we were in yours a few weeks ago. 
Ordinarily we limit witnesses to 5 minutes, however since you 
are the administration witness we are going to allow you to 
have 10 minutes. And, you know, we will be flexible there.
    Ms. Lee. Okay.
    Mr. Bilirakis. Your written statement is a part of the 
record. So you can either read from that or just supplement the 
full statement. Please proceed.
    Ms. Lee. Thank you.
    Mr. Bilirakis. Thank you.

    STATEMENT OF NANCY C. LEE, DIRECTOR, DIVISION OF CANCER 
      PREVENTION AND CONTROL, CENTERS FOR DISEASE CONTROL

    Ms. Lee. Good morning. As you said, I am Dr. Nancy Lee, 
Director of the Division of Cancer Prevention and Control at 
the Centers for Disease Control and Prevention. I am pleased to 
be here this morning to discuss CDC's National Breast and 
Cervical Cancer Early Detection Program.
    In 1990, Congress passed the Breast and Cervical Cancer 
Mortality Prevention Act. Now, CDC is in the ninth year of the 
program, which brings breast and cervical cancer screening 
services to underserved women, including older women, women 
with low incomes, and women of racial and ethnic minorities.
    CDC supports early detection programs in all 50 States, 
five U.S. Territories, the District of Columbia and 15 American 
Indian and Alaskan native organizations. The program 
establishes or expands community-based screening services to 
reduce breast and cervical cancer mortality.
    The success of the program depends on screening, education 
and outreach, case management and mechanisms to assure the 
quality of tests and procedures. Also the women diagnosed with 
cancer and precancer need treatment--need to receive timely and 
appropriate treatment. And we are committed to all of those 
parts of our program.
    CDC collects data from all funded programs to monitor and 
evaluate each program's clinical services. For each woman 
screened in the program, information is collected on basic 
demographic characteristics, results from mammograms, breast 
examples and Pap tests, diagnostic procedures and outcomes, 
including cancer diagnoses and, for women diagnosed with 
cancer, whether and when treatment was initiated.
    We are not able to collect information on the type or 
quality of treatment received. Through September 1998, 1.3 
million women have received 1 million Pap tests and 950,000 
mammograms. Almost half of these screenings were to minority 
women. More than 5,800 women were diagnosed with breast cancer. 
More than 30,000 women were diagnosed with precancerous 
cervical lesions and 508 women had invasive cervical cancer.
    The majority of these cancers have been diagnosed at an 
early stage. 27,000 health professionals are involved in 
providing breast and cervical cancer screening services to 
underserved women. More than 18,000 health educators and 
outreach workers are educating women on the importance of early 
detection, and one of CDC's partners in the program, Avon, has 
raised $32 million to educate women about breast cancer and 
provide underserved women with access to early detection 
services.
    As we have already heard before this morning, screening 
exams by themselves do not save anyone's life; ensuring that 
all women with abnormal screening results receive adequate 
follow-up and a diagnosis is a crucial component of this 
program. Thus CDC's program supports breast diagnostic services 
including diagnosis mammography, breast ultrasound, fine needle 
aspiration and breast biopsy, and for the cervix coloscopy and 
biopsy.
    Moreover, women diagnosed with breast cancer must receive 
timely and appropriate treatment. The legislation authorizing 
the national program does not allow Federal resources to be 
used for treatment; however, States are required under terms of 
the grants they receive to assure that women who are screened 
and need cancer treatment receive it. The most current program 
data indicate that 92 percent of the women diagnosed with 
breast or cervical cancer have initiated treatment, the 
remaining 8 percent refused the treatment, have not yet 
initiated or are lost to follow-up.
    For women diagnosed with breast cancer, they show a median 
of 8 days between the cancer diagnosis and the initiation of 
treatment. A study of seven States' screening programs funded 
by CDC documents the approaches used to secure resources for 
treatment. Rarely is there a standard way to obtain treatment 
services for women who need them. State programs have developed 
sophisticated, creative, and successful strategies to deal with 
the challenge of payment for cancer treatment, and at least 
based on our data these so far have been working.
    However, tremendous effort is involved in developing and 
maintaining these systems, and they are often tenuous, fragile 
and short lived. The following are some of the strategies that 
are employed by States to secure treatment services for women. 
Providers assist eligible clients in applying for Hill-Burton 
funds or other types of public assistance. Clients are referred 
to public hospitals or receive care through donated services or 
other charitable care. The program asks treatment providers 
through State and county medical societies to offer free or 
reduced cost services. Contracts with screening providers 
require that agreements with treatment providers be established 
before screening begins.
    For example, North Carolina has appropriated State 
resources to provide for cancer treatment services for all 
State citizens who need eligibility criteria. California 
utilized a one-time allocation of $12.8 million from the Blue 
Cross Foundation to pay for treatment during the first year 
after diagnosis for eligible uninsured women.
    Increases in CDC's fiscal year 1999 appropriation will be 
used to expand critical case management services in States to 
strengthen the fragile system for securing treatment services. 
Each program will enhance case management activities to help 
clients to obtain treatment. CDC and its State partners will 
continue to give critical priority to the treatment issue, 
which is a critical aspect of the early detection effort.
    Although States are currently meeting their commitment to 
help women access treatment, programs have told us of concerns 
regarding their ability to expand screening services to more 
women because the systems for obtaining charitable treatment 
are becoming overburdened. As long as the numbers of cancers 
diagnosed through the program remain near the current level, 
the burden should not be too great; however, increased 
screening, which is our goal, is accompanied by increased 
numbers of cancers diagnosed. And many physicians who contract 
with programs are concerned about bringing more uninsured 
patients into their care because of the need to provide 
treatment.
    Lack of sources for treatment can lead to screening 
problems in States where screening providers must have standing 
treatment referral options in order to screen. CDC's National 
Breast and Cervical Cancer Early Detection Program does not 
change whether a women has cancer. However, by improving her 
chances of detecting the cancer early and getting treatment for 
it, the program can help keep her from dying of it, and by 
finding and treating precancerous cervical lesions, the program 
prevents thousands of women from every developing cervical 
cancer.
    Thank you. And I am happy to answer any questions you may 
have.
    [The prepared statement of Nancy C. Lee follows:]
   Prepared Statement of Nancy C. Lee, Director, Division of Cancer 
Prevention and Control, National Center for Chronic Disease Prevention 
   and Health Promotion, Centers for Disease Control and Prevention, 
                Department of Health and Human Services
    Good Morning. I am Dr. Nancy Lee, Director of the Division of 
Cancer Prevention and Control of the National Centers for Chronic 
Disease Prevention and Health Promotion, Centers for Disease Control 
and Prevention (CDC). I am pleased to be here this morning to discuss 
CDC's National Breast and Cervical Cancer Early Detection Program.
    Recognizing the value of appropriate cancer screening, Congress 
passed the Breast and Cervical Cancer Mortality Prevention Act of 1990 
(Public Law 101-354). CDC is in the ninth year of the National Breast 
and Cervical Cancer Early Detection Program, which brings critical 
breast and cervical cancer screening services to underserved women, 
including older women, women with low incomes, and women of racial and 
ethnic minorities. While successes and advances have been made with the 
help of this program, challenges still exist.
    CDC supports early detection programs in all 50 states, five U.S. 
territories, the District of Columbia, and 15 American Indian and 
Alaska Native organizations. The program establishes, expands, and 
improves community-based screening services for women to reduce breast 
and cervical cancer mortality. The success of the breast and cervical 
cancer program depends on screening, education and outreach, 
partnership development, case management, and mechanisms to assure the 
quality of tests and procedures.
    Through September of 1998, more than 2 million screening tests have 
been provided to over 1.3 million women. That number includes 1 million 
Pap tests and 950,000 mammograms. Almost half of these screenings were 
to minority women, who have traditionally had less access to these 
services. Over 5,000 women have been diagnosed with breast cancer, more 
than 30,000 women were diagnosed with precancerous cervical lesions, 
and 411 women had invasive cervical cancer.
    CDC collects data from all funded programs to monitor and evaluate 
each program's provision of clinical services. For each woman enrolled 
in the program, information is collected on demographic 
characteristics, results from mammograms, breast exams, and Pap tests, 
diagnostic procedures and outcomes, cancer diagnoses, and for women 
diagnosed with cancer, whether treatment was initiated.
    The program's success is due in part, from a large network of 
professionals, coalitions and national organizations dedicated to the 
early detection of breast and cervical cancer.

 An estimated 27,000 health professionals are involved in 
        providing breast and cervical cancer screening services to 
        underserved women.
 More than 18,000 health educators and outreach workers are 
        educating women on the importance of early detection and 
        helping them access critical screening and follow-up services.
 More than 7,000 individuals are now members of a national 
        network of coalitions that have joined together with State 
        health departments in support of this program.
 One of CDC's partners in the program, Avon, has raised more 
        than $32 million in additional dollars to educate women about 
        breast cancer and to provide underserved women with access to 
        early detection services.
    There has been a 20 percent increase in screening mammography rates 
among all women 50 years and older since 1991, when the program was 
formally established. For both mammograms and Pap tests, the disparity 
rates for most of the minority groups have either been eliminated or 
reduced. There has been a recent decline in the rate of breast cancer 
mortality. And while there remains much to be done, our most recent 
mortality data from 1996 indicates that we have met the Healthy People 
2000 goal of reduced mortality from breast cancer.
    Insuring that all women with abnormal screening results receive 
adequate follow-up and a definitive diagnosis is a crucial component of 
this program. Thus, breast diagnostic services funded by federal 
dollars include diagnostic mammography, breast ultrasound, fine needle 
aspiration and breast biopsy and for the cervix, colposcopy and 
colposcopy-directed biopsy.
    The legislation that authorizes the National Program does not allow 
federal resources appropriated for the program to be used for 
treatment. However, States are required, under terms of the grants they 
receive, to assure that women who are screened and need cancer 
treatment, receive care.
    Data through March 1998 show that 92 percent of the women diagnosed 
with breast cancer and invasive cervical cancer have initiated 
treatment. The rest refused treatment, have not yet initiated 
treatment, or are lost to follow-up. For women diagnosed with breast 
cancer, data show a median of 8 days between the cancer diagnosis and 
the initiation of treatment.
    A detailed study of seven state screening programs conducted by 
Battelle Centers for Public Health Research and Evaluation and the 
University of Michigan, funded by the CDC, documents the innovative 
approaches that have been implemented to identify and secure resources 
for treatment services. The study confirmed what we see in our Program 
data that arrangements for treatment were made for almost all clients 
who received a diagnosis of breast or cervical cancer. States' efforts 
to secure treatment for women screened through the Program have been 
further documented in a separate study conducted by the Susan G. Komen 
Breast Cancer Foundation.
    State programs and their partners have invested significant amounts 
of time and effort to develop systems of care for diagnostic follow-up 
and treatment; these systems appear to be working. However, tremendous 
effort is involved in developing, implementing, and maintaining 
strategies and systems for these services. Rarely is there a 
standardized way that a State, tribe or territory obtains treatment 
services women need that are not covered by the program. Efforts 
typically are tailored to an individual client's needs and resources.
    State programs have developed sophisticated, creative and 
successful strategies to deal with the tremendous challenge of payment 
for cancer treatment. The following are some of the strategies that are 
employed by States to secure treatment services for women:

 Providers assist eligible clients in applying for Medicaid, 
        Hill Burton funds, or other types of public assistance.
 Clients may be referred to public hospitals, or receive care 
        though hospital community benefit programs, donated services, 
        or other charitable care.
 Contracts with screening providers require that agreements 
        with treatment providers be established before screening 
        commences.
 The Program appeals to treatment providers, through state and 
        county medical societies and professional associations, to 
        offer free or reduced-cost services to program clients.
    Case management was identified in the Battelle study as one 
strategy that could assist programs in their efforts to ensure the 
follow-up and treatment of clients. CDC has developed a comprehensive 
policy on case management for the program. Increases in CDC's FY 1999 
appropriation will be used to expand critical case management services 
in States that strengthen the fragile system for securing treatment 
services. With these funds, each program will enhance case management 
activities to assist clients navigate through the system to obtain 
treatment services that are not covered by the program.
    Both North Carolina and Arkansas have appropriated State resources 
to the Cancer Control Programs to provide for cancer diagnostic and 
treatment services for all state citizens who meet eligibility 
criteria. California utilized a one-time allocation of $12.8 million 
from the Blue Cross Foundation to create a Breast Cancer Treatment 
Fund, which paid for treatment during the first year after diagnosis 
for any uninsured California women who met eligibility requirements. 
Unfortunately, this fund is nearly depleted.
    Although States are currently meeting their commitment to help 
women access treatment services, several of the programs reviewed in 
the Battelle study expressed concerns regarding their ability to expand 
screening services to more women in need because the systems in place 
for obtaining charitable treatment are becoming overburdened. These 
programs stated that as long as the numbers of cancers diagnosed 
through the program remain near the current level, the burden should 
not be too great or too threatening.
    However, increased screening--which is our goal--is accompanied by 
increased numbers of cancers diagnosed, and many physicians who 
contract with programs are concerned about bringing more uninsured 
patients into their care, because of the need to provide treatment. 
Lack of sources for treatment can lead to screening problems in states 
where screening providers must have standing treatment referral options 
in order to screen.
    States are finding it more and more challenging to ensure that 
these women get the treatment they need. The labor-intensive and 
piecemeal approach needed to secure treatment services diverts human 
and financial resources away from the screening services. The overall 
goal of this program is to reduce mortality from breast and cervical 
cancers, and the success of this effort hinges on the identification 
and treatment of early stage cancers and precancers. As they have in 
the past, CDC and its state partners will continue to give priority to 
this critical aspect of the early detection effort.
    Let me relay to you how one woman felt about the program:
        I was forty years of age, a recently divorced women with no 
        health insurance and working for peanuts when I discovered a 
        lump in my breast. It was a very traumatic experience, to say 
        the least. My fears that accompanied this finding were 
        overwhelming. In my present financial position, I would have 
        never received the medical attention I needed, if it wasn't for 
        your program. I am healthy, the lump was benign. Through this 
        entire ordeal, I was able to focus all my energies on my 
        medical problem, while your office proficiently attended the 
        bills.
    CDC's National Breast and Cervical Cancer Early Detection Program 
does not change whether or not a women has cancer. However, it can help 
women by improving their chances of detecting cancer earlier and 
getting treatment for it. And by finding and treating precancerous 
cervical lesions, the Program prevents thousands of women from ever 
developing cervical cancer.
    Thank you, and I would be happy to answer any questions you may 
have.

    Mr. Bilirakis. Well, thank you, Ms. Lee. During our visit 
to the CDC and in your written statement, you indicated the 
vast majority of patients screened are currently receiving 
treatment, but that the safety net is being stretched.
    By your estimate, how many women screened through the 
program are not being treated?
    Ms. Lee. Well, I think it is about 8 percent, but some of 
those are in the data pending category. So let me just check 
here. Our most current data suggests that 1 percent are lost to 
follow-up of the women diagnosed with cancer and 2 percent 
refuse care. About 5 percent, the information is pending. And I 
would assume the vast majority of those 5 percent will be 
destined at this point to receive care.
    Mr. Bilirakis. In other words, information is pending.
    Ms. Lee. Our data system has a lag time.
    Mr. Bilirakis. You haven't caught up to it yet?
    Ms. Lee. Yeah, right. So the 2 percent refused care and the 
1 percent lost to follow-up. And I might add that among both 
the refused and the lost to follow-up, extraordinary efforts 
are made to track these women down and to convert them to 
have--go ahead and have their treatment. Because we have this 
extensive data system and we have gotten a lot of feedback on 
this, it really enables the providers to find the women who 
might otherwise have fallen through the cracks. And they can 
really go after it with a vengeance and we know they do try to 
locate these women who have refused care or are lost to follow-
up.
    Mr. Bilirakis. I would like to get to that in a moment, 
because it blows my mind that people would refuse treatment. 
But on that 5 percent, will they receive treatment?
    Ms. Lee. We don't know.
    Mr. Bilirakis. You don't know?
    Ms. Lee. I mean, that is information pending. It is a data 
lag. I would suspect that a number of them would just because 
it is 92 percent have received. It is just sort of--but it may 
be that the information is pending because they have lost the 
follow-up.
    Mr. Bilirakis. Now does the CDC program require treatment?
    Ms. Lee. Yes, in our grant awards, it is part of the grant 
award that the States in order to accept the money have systems 
in place to receive--to find treatment.
    Mr. Bilirakis. This thought that some of the women who are 
screened and found to be positive are not receiving treatment 
is probably false, because in effect most women are receiving 
treatment unless they refuse it, right?
    Ms. Lee. Or they are lost to follow-up. No, I think some 
women are not receiving treatment. And we don't know why they 
are refusing treatment.
    Mr. Bilirakis. Will the 5 percent receive treatment within 
a certain number of days, say within 30 days?
    Ms. Lee. Well, no, 92 percent of the women in our data set, 
which is currently through March 1998, we have a big lag time. 
But--because you know we have several million records in there, 
but through March 1998, 92 percent of women have initiated 
treatment. That is all we know. We do not know if it was a full 
course, they have initiated treatment. And then did. So there 
are 8 percent of women that we are not certain that they have, 
3 percent basically have either refused or lost to follow-up.
    Mr. Bilirakis. Okay. But the 5 percent----
    Ms. Lee. That is just where the data are pending.
    Mr. Bilirakis. Okay. But----
    Ms. Lee. Some of them may fall into the refused or lost to 
follow up.
    Mr. Bilirakis. But those that will not fall into those, 
what is now the 3 percent category will be receiving treatment 
in a timely manner?
    Ms. Lee. It may not be timely, but the timeliness is a 
separate item. We have information on every woman who is 
diagnosed, we have the date of diagnosis and the date the 
treatment was initiated. The median for that is 8 days, but 
there are women in our data set whose treatment was initiated 
over a year afterwards. So they are what we call in statistics 
the sort of the end of the curve.
    Mr. Bilirakis. Okay. I am contemplating for the benefit of 
the members of the panel----
    Mr. Lazio. Mr. Chairman, was it a year that she said?
    Ms. Lee. There are women in our data base--the median, half 
of the women receive their treatment initiation within 8 days. 
That is what median means, but there are women who are very far 
out. There are not very many of them or the median wouldn't be 
8 days.
    Mr. Bilirakis. Now, why are they far out?
    Ms. Lee. For a whole variety of reasons, and we do not have 
the information in our data set as to why they are very far 
out.
    Mr. Bilirakis. All right. I just wanted to announce that my 
contemplation is we would have a second round so we can maybe 
cover these things with the doctor provided she is willing. And 
I would like to think she is.
    Ms. Lee. I do have a plane to catch to San Diego.
    Mr. Bilirakis. What time?
    Ms. Lee. Three something, and I have a conference call 
before then.
    Mr. Bilirakis. We have got to vacate this room by 2 
o'clock.
    Ms. Lee. Everybody has got to eat lunch too, right?
    Mr. Bilirakis. Let me ask you, Doctor, just one general 
question. I suppose the bottom line is trying to help as many 
women who need help as possible. But we have got to find the 
people who need the help, in other words, screening first. We 
can have the best treatment methods on God's earth, but if we 
can't get to those who need it we can't help them, right?
    Ms. Lee. Exactly.
    Mr. Bilirakis. Maybe you can address the screening aspect 
for us very briefly. Now that is not the subject of this 
legislation, but can you address this issue? I mean is there 
something that can be done reasonably and responsibly to 
improve that area, or would you feel that there isn't much more 
that we can do; in other words, it just takes time to reach 
out?
    Ms. Lee. Well, I mean the technology could always improve. 
That is not what we are about. You know, we are about taking 
and improving technology and applying it, but certainly that is 
one area that we could go, is to have improved technology for 
screening. And right now with our current resources, we can 
reach only 12 to 15 percent of eligible women.
    Mr. Bilirakis. All right. I guess that is the point.
    Ms. Lee. Yeah.
    Mr. Bilirakis. So you know we can have the best treatment 
methods on God's earth, and I am a cosponsor of this 
legislation, and if we don't do this legislation, I hope that 
it is only because we are doing something better, whatever that 
might turn out to be, if in fact there is anything better, 
again, if we only reach 12 to 15 percent of the eligible 
population, then, neither screening nor treatment are available 
to the women in need.
    Ms. Lee. We estimate that there are about 11 million 
eligible women, women eligible for this program in the United 
States who are not----
    Mr. Bilirakis. Who are not being----
    Ms. Lee. [continuing] enrolled in the program.
    Mr. Bilirakis. My time is up. Mr. Brown.
    Mr. Brown. Thank you, Mr. Chairman. Let us pursue that half 
a million women there. Just understanding that the target 
population is 250 people, 250 percent of poverty that are not 
Medicare or Medicaid eligible; is that correct?
    Ms. Lee. Well, the target population varies in each State. 
The max--I mean the highest percent of poverty is 250 percent. 
There are some States where the eligibility requires lower, 
like 100 percent of poverty. Some States you have to be 100 
percent poverty or lower to be eligible. So the States set the 
eligibility criteria. The CDC has provided guidance that it has 
to be 250 percent or lower, but some States go lower than that.
    Mr. Brown. To include more people or----
    Ms. Lee. Well, to include--well, it makes even more low 
income.
    Mr. Brown. Okay. 12 to 15 percent of the target population 
is screened, that number you had cited earlier. What is the 
percentage of people screened who test positive?
    Ms. Lee. Well, it is a cascade. Ultimately--and it differs 
for breast and for cervical cancer. We estimate that less than 
1 percent of all the women we screened ultimately are diagnosed 
with breast cancer. About, depending on sort of how you make 
the definitions, 7 to 10 percent of women will have an abnormal 
mammogram. But most of those women who have an abnormal 
mammogram are found not to have cancer.
    Even fewer percentage of women who are screened for 
cervical cancer have--are found to have the disease, remember 
we have screened 1.2, about 1 million women for cervical cancer 
and have found 50 cases. But as I say to everybody, our goal is 
not to find cervical cancer, our goal is to find precancerous 
lesions, treat and cure the women. And so we have found 30,000 
cases of precancerous lesions which we treat.
    We also found cervical cancer and treat that, but our main 
goal is to find the precancerous lesion so women never have 
cancer.
    Mr. Brown. Some 85 percent of the population is not 
screened apparently?
    Ms. Lee. 85 percent of the eligible population.
    Mr. Brown. The eligibility target population. And my 
understanding is that some of the screening program's resources 
are consumed by the search for treatment, because those doing 
the screening spend a significant amount of time and resources 
looking for physicians and other health care providers to do 
free or low cost treatment, correct?
    Ms. Lee. Some of our--yes, I mean our State programs and 
the providers are required to make sure that every woman with 
cancer is treated, and so they have to find treatment sources.
    Mr. Brown. And under Federal law, none of the screening 
money may be used for actual treatment, correct?
    Ms. Lee. Correct.
    Mr. Brown. Although some of the screening money is diverted 
in a sense in terms of time and resources to find free care.
    Ms. Lee. As you know, in the law, 60 percent of the 
appropriated money must be used for direct clinical services. 
We use that for payment for the screening and diagnostic tests. 
The other 40 percent may be used for other things like 
professional education, case management, prof ed administrative 
costs, but some States actually use more than 60 percent to pay 
for screening. It just depends.
    Mr. Brown. Mr. Chairman, there is a letter from Dr. Robert 
Brooks, who is the secretary of the department of health in 
your State, as you know, to Senator Connie Mack, pointing out 
some of these problems in the State of Florida, and I have no 
reason to believe that it is different anywhere else. It is 
getting more and more difficult as we screen people to find 
free care, especially with the squeeze in managed care and in 
taking away the options that physicians and other providers 
seem to have.
    And I would like to first ask unanimous consent to include 
this in the record.
    Mr. Bilirakis. Without objection.
    [The letter referred to follows:]

                               Department of Health
                                            Tallahassee, FL
                                                      June 22, 1999
The Honorable Connie Mack
United States Senate
517 Hart Senate Office Building
Washington, DC 20510
    Dear Senator Mack: This letter in response to the May 4th telephone 
inquiry from Mark Smith to Margo Blake regarding cancer treatment for 
women enrolled in Florida's Breast and Cervical Cancer Early Detection 
Program (the Program). Thank you for allowing us the opportunity to 
furnish some details about the Program.
    Florida received its award from the Centers for Disease Control and 
Prevention (CDC) in late summer 1994. We started operations in nine 
counties in September 1995 and grew to 20 counties in 1996. The 20 
counties are composed of large urban areas, mid-sized counties and 
small rural counties. (A map depicting all 20 participating counties is 
enclosed.) Population data show that there are approximately 275,000 
women, ages 50-64 in Florida who are under or uninsured. Slightly over 
175,000 of these women reside in the 20 participating counties.
    Since late 1995, CDC grant funds have allowed the Program to 
provide screening services to slightly over 10,000 eligible women. 
Annually, the participating counties screen approximately 3,500 women 
or about 2 percent of the eligible population. One hundred thirty women 
have been diagnosed with breast or invasive cervical cancer through 
this Program in Florida. As you know, CDC funds cover reimbursement at 
the Medicare rate for breast and cervical screening services such as 
Pap smears and mammograms. There are also limited funds for specified 
diagnostic procedures such as coiposcopies, biopsies, and breast 
ultrasounds. The CDC funds cannot be used for reimbursement for 
treatment or other associated costs. This is the Program's most 
vulnerable area as we are now entering a competitive application 
process for additional CDC grant funds to begin year six in October 
1999.
    We are starting to see the strain our providers are experiencing 
through their support of the program. Before providing case scenarios 
that demonstrate this strain, I would like to expand on the definition 
of provider as used throughout this letter. Normally, we refer to the 
general or oncologic surgeon as the principal provider of treatment. 
Many others also donate services to the breast and cervical program. 
These include oncologists, radiologists, radiation oncologists, 
pathologists and hospitals.
    The scenarios mentioned include the following
 One county program worked with a client diagnosed with 
        cervical cancer in November 1998. The woman saw a gynecological 
        oncologist in January 1999 and underwent a hysterectomy in 
        March after filing for Medicaid. Her family had to pay $6825 up 
        front to cover hospital costs, which may be covered 
        retroactively by Medicaid.
 One county program had three women diagnosed with breast 
        cancer during their first two years in operation; each one 
        cared for by a different provider. Since October 1998, five 
        additional women have been diagnosed and approximately 10 to 15 
        more have abnormal clinical breast exam or mammogram results 
        and could be diagnosed with cancer. Needless to say the 
        providers are concerned with these increasing numbers. Some of 
        the providers have asked the local program coordinator not to 
        refer additional patients to them for the remainder of this 
        program year.
 Another county program has seen a total of 10 women with 
        cancer and they have two to three physician providers and one 
        hospital provider who agrees to see program clients. These 
        providers have also expressed alarm at the number of women with 
        abnormal exams who are referred to them for care. We have been 
        told that these current providers may not be willing to support 
        the Program when this county renews their program agreement 
        this October.
 The fourth county program diagnosed 10 women with breast 
        cancer during their first two years and since January 1999 
        diagnosed four more women with breast cancer. Ten providers who 
        originally agreed to each see one to two clients per year have 
        formed three separate groups who have agreed to see one to two 
        clients per group, for a total of three to six clients per 
        year. This would not be sufficient coverage if the rate of 
        diagnosing cancer continues.
    CDC has informally conveyed to us that they may award the Florida 
Program more funds for breast and cervical screening services in our 
next five-year grant cycle that begins this October. While this is 
positive news for the many thousands of women at need for these 
services, we also believe this will have a domino effect on the 
providers who provide in-kind treatment. With increased numbers of 
women screened comes an increase in the numbers of cancers diagnosed, 
placing an ever-increasing burden on our already overwhelmed providers 
of cancer treatment. Please note these same providers more than likely 
also donate in-kind services to other clients diagnosed with cancer or 
other chronic diseases.
    So while our information shows that a provider may furnish pro bono 
treatment for two or three women with breast or cervical cancer per 
year, in all likelihood that same provider is asked to donate treatment 
services for other clients as well. We are deeply indebted to all of 
these individuals and institutions for their support of the Program and 
would like to see them receive some measure of acknowledgement for 
their efforts.
    In summary, the Florida Breast and Cervical Cancer Program has 
provided cancer services to over 10,000 women at or below the 200 
percent poverty level, and found treatment services for over 130 women 
through the generosity of local providers in 20 counties. As screening 
numbers increase, so will the number of women diagnosed with breast or 
cervical cancer.
    Our providers are showing signs of abandoning this program unless 
we are able to provide them some assistance that is not available 
through the CDC grant.
    Thank you for your personal interest in Florida's Program. If you 
have further questions, please feel free to contact me at (850) 487-
2945, or Ms. Margo C. Blake, Program Manager for the Breast and 
Cervical Cancer Early Detection Program at (850) 488-2901. We look 
forward to a successful conclusion to this year's session and wish your 
our best.
            Sincerely,
                                     Robert G. Brooks, M.D.
                                    Secretary, Department of Health
cc: Mark Smith

    Mr. Brown. Second, just quote a couple of places, our 
providers, again Secretary of Department of Health in Florida 
to the Senator, our providers are showing signs of abandoning 
this program, unless we are able to provide them some 
assistance that is not available through the CDC grant. And 
also CDC has informally conveyed to us that they may award the 
Florida program more funds for breast and cervical cancer 
services in our next 5-year grant cycle, which begins this 
October. While this is positive news for many thousands of 
women who need these services, we also believe this will have a 
domino effect and the providers who provide incoming treatment. 
He goes on to--the director of--Secretary Brooks then goes on 
to sort of brag about the program and the good things it has 
done, but also to warn us that as we screen more people we are 
in a sense leaving more people hanging out to dry. And I would 
just like to enter that in the record and make that point, that 
treatment is every bit as important as the screening.
    Thank you, Mr. Chairman.
    Mr. Bilirakis. Mr.Lazio.
    Mr. Lazio. Thank you, Mr. Chairman. First of all, I want to 
thank you for your work. And while I don't want to put you 
particularly on the defensive, I do want to ask some questions, 
because I am very concerned with the numbers being thrown 
around and the huge disconnect between the physicians and the 
providers on the ground that speak to me about the problem and 
the actual women who have delayed diagnosis or have been 
diagnosed and have not received treatment, and what you are 
saying--and I think we are going to hear from some of the 
witnesses who have on the ground experience with this--let me 
begin by just asking you about these surveys, the University of 
Michigan survey, for example.
    How was that conducted, to the best of your knowledge? Were 
any women surveyed individually? Did we actually go--so you 
never talked to any women who actually were in the program.
    And let me ask you this: So we don't really know in any 
real sense about the continuity of care. When you say, for 
example, that a treatment was ``initiated,'' we don't know 
whether that was an appointment or whether it was surgery or 
radiation, chemotherapy, reconstruction, Tamoxifen. We have no 
idea what that means and whether it was spotty and sporadic or 
whether it was initiated.
    There is a big difference between when someone makes an 
appointment and may have one opportunity to see a physician. 
Somebody who gets the quality of care that we would want for 
our children, or for my mother, for example, you would want to 
have the peace of mind to know that they--those women who are 
testing positive are getting the continuity of care and the 
quality of care that will help them battle cancer and win the 
war as best they can.
    Ms. Lee. As I stated in my testimony, we are not able to 
collect data on the type of treatment, or even more difficult, 
on the quality of treatment either from the perception of the 
providers or the perception of women. That is not something 
that we are able to do. We had defined ``initiated treatment'' 
to mean the treatment was initiated, not that an appointment 
was given. So that is how we have told the States when they 
provide us the data, don't tell us that you gave them an 
appointment or gave them a referral. That is not good enough. 
We want to know that treatment was initiated. But after that 
point, our data systems do not allow us to further characterize 
the quality of the care.
    Mr. Lazio. Isn't that a problem? Don't you see that as a 
problem?
    Ms. Lee. Oh, yes, but I will put it to you to find out the 
quality of care of any woman in this country getting cancer 
treatment. The data systems are not there to tell us. It is a--
--
    Mr. Lazio. But I guess my concern is, it is very difficult 
to have credibility in making--I am not challenging you on this 
right now personally to suggest that 92 percent of the women 
are getting care and of the remaining 8 percent, some are 
refusing care and it sort of creates the imagery that everybody 
is getting the kind of care that we would want for our 
children, and I say--because I know men get breast cancer, as 
well--men or women, whatever--when, in fact, we have no clue as 
to whether we have the standard of care that we should expect.
    And so I pose that as sort of a conclusion for me, that I 
think that these numbers are--assuming that they are correct at 
all, and I don't know; I have no basis as to whether they are 
correct or not--they certainly are very misleading, because all 
they are saying is, first of all, they are not even speaking to 
the women, which seems to me a very significant flaw to begin 
with, and then you are not surveying the continuity of the care 
or the quality of the care.
    One would think CDC would embrace with open arms a system 
that is reliable, whether there are quality standards by way of 
the Medicaid system, at both the State and Federal level, that 
you would want to have a system where women could be better 
educated where treatment was available in a reliable way, that 
it is easier to market and get the word out.
    I am puzzled by the position of CDC, if I can call it a 
``position'' right now.
    Mr. Bilirakis. A brief response to that. Don't forget, we 
will have a second round of questions.
    Ms. Lee. The information on the percent that receive 
treatment, that is from the woman; each time a woman is 
screened in our program, we receive information on all 
subsequent outcomes through the diagnosis and initiation of 
treatment. The telestudy, the study I alluded to, were 
interviews with providers of care; and so that is not with the 
woman, you are correct. But we believe and we have had lots--I 
mean, you just have to believe what the States tell us. We 
believe, the data system that we have, about the 92 percent. We 
think it is a very good data system.
    Mr. Lazio. There is obviously a disconnect, though, between 
what the States--if you believe between what the States may be 
telling you and what is happening on the ground--and we didn't 
get into this, but I am wondering what type of quality 
assurance you have that the States are actually providing 
reliable numbers on top of that.
    Mr. Bilirakis. We will do that in the second round.
    Ms. Eshoo.
    Ms. Eshoo. Thank you, Mr. Chairman. And thank you, Dr. Lee, 
for not only being here today and testifying, being part of 
this hearing, but for the work that you do at CDC.
    I want to pick up where Congressman Lazio just left off and 
present this question to you. Why is there such a disconnect 
between the numbers that you are giving us and the cases, the 
women that come to us in our districts and say, I couldn't get 
treatment?
    Can you describe the treatment that has been described to 
you by the States? My experience in tracking my own 
constituents--because I ask good questions of them: Tell me 
what you did. Where did you go? Where did you get the money 
from? Who helped you? What doctor did you go to? What clinic 
did you go to? What hospital did you go to? Who told you about 
it? What community organization helped you?
    It is, at best, such a bumpy patchwork quilt.
    Yes, there are extraordinary people out there that are 
willing to help people, but I don't think that is the question. 
I think the issue is that there be a smooth transition between 
detection and treatment and the coverage for that treatment. So 
tell me your stories.
    I know what mine are. I would rather have you tell the 
stories, not so much in terms of the statistics that you have 
just given us, but some of the specifics of how you have 
tracked them and what the stories are of how there is a smooth 
transition for this 90-something percent of the 12 to 15 
percent. Of course, you know, in terms of screening, maybe you 
don't have enough money to get to the 100 percent, but that is 
really not what this hearing is about. The hearing is on the 
bill and how the approach that we are taking in the bill 
which--I understand there is some discomfort, but, boy, am I 
uncomfortable about what I just described.
    So can you tell me your story?
    Ms. Lee. Sure.
    In the first--our statistic, I think maybe is sometimes 
overinterpreted. All it says is that 92 percent of women 
initiated treatment.
    Ms. Eshoo. Dr. Lee, have you gone out on the road? Do you 
know what this 92 represents?
    Ms. Lee. That is just initiated; it doesn't even mean they 
completed the first round. It just means treatment, and breast 
cancer treatment is a very prolonged affair, so all that says--
so don't overinterpret that statistic. And it is very, very 
difficult when you are dealing with 2 million records to get 
much more detail on treatment than that.
    Ms. Eshoo. I think when we hear the word ``treatment,'' we 
make the supposition that this is beginning, middle, and end 
when we are treated for something. I mean, I think all of our 
instincts tell us to believe that.
    Ms. Lee. So all our data suggests, all that 92 percent 
suggests is that they initiated treatment, which is a 
multistep----
    Ms. Eshoo. Do we have any idea how many concluded 
treatment?
    Ms. Lee. No. And for both of those cancers, the treatment 
may be ongoing for several years, so it is a very difficult 
thing to collect lots of information on.
    Let me say two other points. The first is that as a 
physician and as the director of this program, I cannot tell 
you how important I think it is that all of these women who are 
diagnosed with cancer get what they need in a timely and 
appropriate fashion and in a smooth way. I can't tell you.
    I mean, I have been taking care of patients with breast 
cancer for many years, not many anymore because I am full-time 
at CDC, but I do some. So it is very important, and it is 
something that we are very committed to; and it is difficult in 
the situation in which we exist, but we do what we can----
    Ms. Eshoo. What----
    Ms. Lee. Just a minute. To say that----
    Ms. Eshoo. You're out of time.
    Ms. Lee. You asked me a big question, and you want me to 
tell you a story.
    To say that our report says it is smooth is not what I 
think our report says. I think our report, the report from the 
seven-State study actually details a laborious, bumpy, fragile 
process; and I would not characterize the process that we know 
that is going on out there as ``smooth'' for women.
    Ms. Eshoo. Can you define for us what ``initiate 
treatment'' means? Does it mean a woman making an appointment 
with a doctor? What does it mean?
    Ms. Lee. I addressed that earlier. That is not what it 
means.
    Ms. Eshoo. I had to step out.
    Ms. Lee. It means that she initiated treatment, and for 
breast cancer, that usually means and when we--we have some 
data from a three-State study that is preliminary, that that is 
almost always surgical; and for cervical cancer, that would 
usually be surgical, sometimes it is radiation.
    What we require of the people giving us the data is, it is 
not an appointment, it is not a referral; it is that it 
occurred, the first step of which for both of those cancers is 
only the first step.
    Mr. Bilirakis. The gentlelady's time has expired.
    Again, I repeat, we are planning to go through a second 
round for those who haven't already heard it.
    Mr. Bryant.
    Mr. Bryant. Thank you, Mr. Chairman. Thank you, Dr. Lee.
    I have a lot of questions and will try to squeeze them in 
the first round. Keep your answers as short as you can.
    Ms. Lee. Not necessarily my strength, but I will try.
    Mr. Bryant. Does it go without saying that all the States 
and territories and tribes participate in this program?
    Ms. Lee. Yes. 50 and 5 and 15.
    Mr. Bryant. There are no gaps there?
    Ms. Lee. There are some. Not all territories are 
participating and many tribes are not participating.
    Mr. Bryant. So there are gaps that are not covered under 
current legislation?
    Ms. Lee. Yes.
    Mr. Bryant. Second, in terms of a situation, have you run 
across evidence where people don't go to a screening because 
they know they don't have the ability to pay for treatment? Do 
you think that is a possibility?
    Ms. Lee. Right. Anecdotally, again from our study in the 
seven States, the providers who were interviewed told us those 
stories, that there were women that didn't want to get screened 
because they knew--didn't know what they would do if something 
was wrong.
    Mr. Bryant. In your statement, you mentioned that the 
current method is an ad hoc patchwork of providers, volunteers 
and local programs. Or maybe it has been stated. I am not sure 
you stated that, but it has been stated that, and that often 
results in treatment that may be unpredictable, delayed or 
incomplete. Would you characterize this as substandard 
treatment in some cases?
    Ms. Lee. In my professional opinion as a physician, if it 
is--certainly, if it is incomplete, that is substandard; and I 
myself would not want to have to feel anxious about where I was 
going to get my next medical oncology visit.
    Mr. Bryant. Would there be in the care, CDC screening care, 
as a result of CDC screening, if it were Medicare, would there 
be the resources there? Would there be problems in finding 
Medicare treatment, as many problems?
    Ms. Lee. Medicare?
    Mr. Bryant. Medicaid, I am sorry.
    Ms. Lee. I am not an expert. You know, Medicaid is 
administered in each State differently, and some States have a 
much stronger Medicaid program than others, I am told. But 
Medicaid is a form of insurance. These women we treat are 
uninsured, and I would assume if you have insurance, you are 
going to do better. I am not an expert in this.
    Mr. Bryant. Let me ask you, I guess, the big question that 
I have. Realizing your role in the CDC and you are actually--
CDC is actually implementing the law that Congress passed in 
1990 in terms of what you can do and what you can't do, but you 
cannot provide treatment directly?
    Ms. Lee. We cannot provide funds for treatment.
    Mr. Bryant. There is a process in place by this law that 
says you have to go out and find it where you can. The State 
has to do that. Is there a better way, and in your position, 
can you talk about this? Can you say if there is a better way, 
how Ms. Eshoo's and Mr. Lazio's bill is?
    Ms. Lee. I am not at all--I am a physician, a scientist and 
a public health professional. I am not an expert on health 
care, how one finances health care, and on policy and 
legislative issues, so I don't think I am a good person to give 
you an opinion on that.
    Mr. Bryant. Is this--from an expense standpoint, we have a 
budget up here and we have to deal with that. I have figures 
from Tennessee, and it shows that in the year and a half that 
apparently Tennessee has been recording, we have had something 
like 1,161 procedures, 335 mammograms and 826 Pap smears; and 
with the good, able assistance of Dr. Coburn, he has given me 
dollars, charges on average, and if you divide the number of 
these tests into the amount of money you received in Tennessee, 
which was over a million dollars for funding that Tennessee 
received, that is fairly expensive. That is almost--not quite 
$1,000 a procedure, but it is getting up there.
    Now, is that money really----
    Ms. Lee. You mean, per screening test?
    Mr. Bryant. On average, per procedure. Is that--it doesn't 
cost that much to do a Pap smear or a mammogram?
    Ms. Lee. No.
    Mr. Bryant. Where is the money going?
    Ms. Lee. We estimate about--on average, and this is back-
of-the-envelope stuff, when we kind of try to figure out--but 
it is $100 to $150 per person, which factors in--which factors 
in the subsequent diagnostic tests, et cetera.
    Mr. Bryant. Where does the other money go then?
    Ms. Lee. There are startup costs. There is--40 percent goes 
to pay for outreach, professional education, quality assurance, 
public education, and administrative costs. So not all of the 
money goes to that.
    It is also--this is a complicated program. States are not--
most States have not been in the business of providing 
screening services to older women, and so there is usually a 
12-to-24-month lag time in their ability to really get out and 
implement this program.
    Mr. Bryant. Thank you.
    Mr. Bilirakis. Mr. Waxman to inquire.
    Ms. Capps to inquire.
    Ms. Capps. Thank you, Mr. Chairman, and I am grateful to 
you, Dr. Lee, for your testimony today and appreciate that you 
are here.
    I want to make sure I have the ground rules that you have 
been charged with at CDC in doing the screening, making sure 
that States are responsible if they sign up for the screening 
procedures to follow up with treatment.
    You do not do treatment of even precancerous lesions?
    Ms. Lee. Correct, with the Federal funds.
    Ms. Capps. With Federal funds?
    Ms. Lee. Correct.
    Ms. Capps. So it is up to the States to catch what happens 
after the screening on behalf of the individuals?
    Ms. Lee. We require them to ensure that that occurs.
    Ms. Capps. I am very mindful that we have in the audience 
people with their own personal stories and you are now on the 
stand and they are going to be presenting their testimonies, 
but they won't have a chance to ask you.
    So I want to try--please forgive me--to put myself in a 
position of being a woman in one--in California who is scared 
to death because I have a lump, or I have some symptoms, and I 
am aware that this screening program exists; and so hesitantly 
I go, but I have no health insurance. I don't qualify for 
Medicaid in my State. I work, but like many women, I have no 
benefits that include health insurance. So I am terrified.
    Now, I go for the screening and I get the terrible news 
that I have a problem that needs to be addressed. What then? 
What happens in terms of your protocols?
    Ms. Lee. Our program is, we may pay. We are able to pay for 
the diagnostic procedures that you need. So, for example, if 
you had a breast lump, one might need a diagnostic mammogram, a 
fine needle aspiration and ultimately a breast biopsy.
    Mrs. Capps. That is still the screening?
    Ms. Lee. It is now the diagnostic follow-up portion.
    Ms. Capps. You would find my doctor for me to go get that?
    Ms. Lee. Yes. And we can pay for a surgical consultation. 
All of those services can be paid for with Federal funds, and 
the breast biopsy.
    You are in California. You are lucky. California has a 
$12.9 million--I don't know exactly what you would call it from 
the conversion of Blue Cross-Blue Shield from nonprofit to 
profit.
    Ms. Capps. Put me in another State where there isn't this.
    Ms. Lee. In California, they have been able to use that to 
pay for treatment.
    Ms. Capps. Right, but some States don't have that.
    Ms. Lee. Correct.
    Ms. Capps. So then what do I do? I am in this doctor's 
office and they say it is worse than you think.
    Ms. Lee. It is really cancer?
    Ms. Capps. It is really cancer.
    Ms. Lee. Depending on the State that you are in--and this 
is what the materials that we have given you discuss--there are 
many, many strategies. The States have case managers to help 
you with this, and what they can do is they can see if you are 
really eligible to apply for Medicare. Some women are and have 
not done it.
    Ms. Capps. For someone to help me do this?
    Ms. Lee. Yes.
    Ms. Capps. Who is that person?
    Ms. Lee. Sometimes at the local level, sometimes at the 
State. We call them ``case managers'' for want of another term; 
and as you are aware, I think, through this committee, we were 
given authorization to do that. And we have extra money in 
fiscal year 1999, as I mentioned earlier, that we are putting 
toward augmenting this already-existing service. So there are 
people, case managers, to help you with this, so they can--they 
have also in some States, or in most States, I think they 
require the screening providers to set up networks with 
treatment providers who are different, as you know, to provide 
in-kind reduced-fee free.
    People might be sent to charity hospitals. A number of 
counties have county indigent funds. In States where this is 
available, they are able to draw down on that. There are 
private foundations who have provided funds. Some States have 
tobacco tax money. So there are a variety of strategies which 
are outlined in the materials we have provided.
    Ms. Capps. I guess this is piecemeal.
    Ms. Lee. It is very piecemeal and fragile.
    Ms. Capps. Is there a time limit? I don't know very many 
cancers that are treated in one fell swoop. This could be a 
year-long process for this woman?
    Ms. Lee. Right. I think what we have encouraged our States 
to do is to insure the first course of treatment.
    Ms. Capps. ``First course'' meaning how many?
    Ms. Lee. Meaning the first course.
    Ms. Capps. I think the picture is there. Some have 
questioned why a woman would not avail herself of this 
screening process knowing on the street what is in store. I can 
understand the terror.
    Mr. Bilirakis. Dr. Coburn.
    Mr. Coburn. Thank you. I would just comment to Ms. Capps, 
having practiced for 16 years, many women won't get screened, 
even when they have insurance, if they have a lump, because of 
the tremendous fear of the unknown; and I would put forth to 
you that that is the majority. Although there are some in terms 
of what you have raised, the majority of women who find a lump 
have such fear that they are intimidated from going to be 
screened or treated. And that is what we need to address. We 
need to address that issue with the women of this country, and 
the CDC should be doing that through public television ads and 
things like that. That is a good way----
    Ms. Capps. If I could just mention, a large part of the 
fear is not knowing who is going to be there for you all the 
way through.
    Mr. Coburn. Well, Dr. Lee, I want you to bear with me. I 
intend no personal animosity toward you, but I have a lot of 
animosity toward the CDC.
    The name of the CDC is Centers for Disease Control and 
Prevention. You just said a minute ago that your goal was to 
find precancer. But the CDC's goal is to prevent, and I just--I 
want to go through--just for the record, if you would answer 
yes or no for me a couple of these questions.
    Do we know the causative agent for cervical cancer?
    Ms. Lee. I think we know at least the major causative 
agent.
    Mr. Coburn. For 94 percent of it. And what is that?
    Ms. Lee. My understanding--I am no expert in this 
particular part, but my understanding it is human papilloma 
virus.
    Mr. Coburn. That is correct. Do we also know that if we did 
not have human papilloma virus, that we would cut that by 94 
percent?
    Ms. Lee. I can't tell you how much we would cut it, but it 
would be cut substantial--cut probably close to zero.
    Mr. Coburn. The scientific studies say there would be no 
cervical cancer, in essence, if there wasn't human papilloma 
virus. And is it not true that human papilloma virus is 
transmitted intrapartumly, in other words, at delivery to 
neonates?
    Ms. Lee. This is--as I said, HPV is handled in a totally 
different part of CDC.
    Mr. Coburn. I understand, but you have a cancer prevention 
and screening program; and what I am asking you is, is that not 
true?
    Ms. Lee. I do not know the answer.
    Mr. Coburn. The answer to that is true. There are six 
studies now that confirm that a child in utero can be infected 
by their mother from human papilloma virus, which means many of 
our young women today will never be exposed to human papilloma 
virus through intercourse, but can still get cervical cancer.
    So my question to you is, why is the CDC--and I have asked 
you this question before--not making human papilloma virus a 
priority both in terms of prevention, reporting, and public 
education about this disease?
    Ms. Lee. As I said earlier, our program is about 
administering the Cancer Mortality Reduction Act, which is 
providing screening services. I have no----
    Mr. Coburn. Pardon me, Dr. Lee. There is nothing in the act 
that says that you can't use that money to prevent the disease. 
We are talking about reducing mortality, reducing disease; and 
my question to you is, why is some of the $150 million a year 
not used to educate the American public to reduce this disease?
    There are 4 million new cases a year of human papilloma 
virus. If the women in this country knew the poor job that CDC 
was doing on human papilloma virus and, if they dare, did it on 
breast cancer, I dare say that most of the people that work for 
CDC in those areas would be hung. The fact is, we have an 
epidemic of a disease causing cervical cancer and nothing this 
government is doing is working to prevent it.
    I agree, I think you are doing a good job in terms of 
trying to identify it. I am concerned that you are not funded 
adequately, and I know that you might find that amazing for me, 
but if there really are 11 million women out there that can't 
get a Pap smear at a health department and can't get breast 
screening over 40 and there are 11 million, $150 million is not 
enough to initiate a program for that.
    I am also concerned that over $60 million a year isn't 
going for screening; that it is going for overhead. I just 
happen to have the data CDC gave me. The total CDC cost per 
screen is $400 per screen. I tell you, that is way too much. We 
can screen twice as many people with what it--we should be able 
to screen twice as many people, based on what you are spending.
    In Oklahoma, it is $550 per person. In Tennessee, it is 
$1,000 per screening event. That is too expensive. There is too 
much overhead and not enough efficiency in the program, and my 
question is, what are you doing to make sure we give more 
screenings with less overhead spent on it?
    Ms. Lee. The overhead, by law, is limited to 10 percent. It 
is not all that you said; the overhead, by law, is limited to 
10 percent. And many States don't even reach that 10 percent.
    Much of what we are talking about in that 40 percent that I 
mentioned earlier is public education, which includes the 
States' own materials on the risk factors for breast and 
cervical cancer. So there are women in this program hearing 
about HPV. We, as a division, don't provide those materials; 
the States have them. But it is outreach. It is professional 
education. It is quality assurance. That is the bulk of the 
moneys that doesn't go to pay for screening services.
    Mr. Coburn. If I could have unanimous consent to insert 
what was sent to me by fax from the CDC office here, of those 
records.
    Mr. Bilirakis. Without objection.
    [The material is retained in subcommittee files:]
    Mr. Bilirakis. Mr. Waxman.
    Mr. Waxman. Thank you, Mr. Chairman. I want to look at the 
insert in the record, and I would hope we could get a statement 
from CDC about what more can be done to prevent cervical 
cancer. I presume if it is through intercourse, protection 
through intercourse might prevent transmission; but if it is 
through birth transmission, I am not sure----
    [The following was received for the record:]

    Cervical cancer is nearly 100 percent preventable, yet according to 
the American Cancer Society, an estimated 12,800 new cases of invasive 
cervical cancer will be diagnosed in 1999 with about 4,800 women dying 
of the disease. The cervical cancer death rate declined 45 percent 
between the periods 1972-74 and 1992-94 and the overall incidence of 
the disease has decreased steadily from 14.2 per 100,000 in 1973 to 7.4 
per 100,000 in 1995. This is largely attributed to the effectiveness of 
Pap smear screening for cervical cytology. Studies that have identified 
risk factors associated with cervical cancer have shown that cervical 
cancer is closely linked to sexual behaviors, human papillomavirus (or 
HPV) infection, immunosuppressive disorders such as HIV/AIDS, as well 
as a failure to receive regular Pap smear screening.
    Experts agree that infection with certain strains of the HPV is one 
of the strongest risk factors for cervical cancer. Other than 
abstinence from sex, means of protection from HPV are uncertain. The 
protection provided by condoms has been difficult to evaluate because 
current laboratory tests for HPV infection cannot determine whether an 
infection is new or acquired in months or even years before. 
Microbicides under development may provide some protective benefits. 
The most promising approach for prevention of transmission will be the 
development of preventive vaccines. Carefully designed studies of all 
of these prevention approaches to HPV will be important in designing 
more effective prevention strategies for this infection.
    Currently, the most important risk factor for developing cervical 
cancer, at least from the point of view of what we can do about it, is 
the failure to receive regular screening with a Pap smear. Since its 
introduction 50 years ago, the Pap smear has been widely used and is 
credited with the steady decline in cervical cancer deaths in the 
United States. Nationwide estimates from 1994 indicated that well over 
90 percent of all U.S. women had received a Pap test at least once in 
their lives and that 80 percent had obtained one within the preceding 3 
years.
    In fiscal year 1999, with Congressional appropriations of $159 
million, the CDC entered into the ninth year of the National Breast and 
Cervical Cancer Early Detection Program (NBCCEDP). The NBCCEDP has 
provided more than 1.1 million Pap test to a total of more than 700,000 
women. Almost half of the women screened are from minority racial and 
ethnic groups. Of Pap tests provided, about 3 percent were abnormal; 
more than 31,000 cases of precancerous lesions were ultimately 
diagnosed, and 508 women were diagnosed with invasive cervical cancer. 
These statistics illustrate a key point for this essential public 
health program. The main purpose of cervical cancer screening is to 
find precancerous lesions, treat them, and cure them, so that these 
women do not go on to be diagnosed with cervical cancer. The program 
has potentially averted cancer in more than 31,000 women. Treatment of 
precancerous lesions is also generally less complicated and less 
expensive than treatment of cervical cancer. Of all the women diagnosed 
with cervical disease through our program, fewer than 2 percent 
actually had a diagnosis of cancer. This underscores the success of Pap 
testing and emphasizes the proven strategy that we as public health 
practitioners can use to fight this cancer.
    With existing resources, the national program is able to screen 12-
15 percent of the eligible population annually. There are an estimated 
11 million women eligible for this program who are not receiving 
screening services due to lack of resources.

    Mr. Coburn. Would the gentleman yield for just a moment.
    Mr. Waxman. Sure.
    Mr. Coburn. I would be happy to yield some time back. The 
studies now show that condoms are ineffective in preventing 
transmission of human papilloma virus. There is no prevention 
we can give for human papilloma virus.
    Mr. Waxman. I want to know more about that subject, but I 
don't want to use my 5 minutes on that area right now. The job 
you have is to work with a screening law for breast and 
cervical cancer, so that we can find those cases that do exist 
and hope to prevent diseases; if you can find cancer early 
enough, treatment can be a cure or at least a containment of 
this disease.
    In order for it to be a containment or a cure of the 
disease, people have to get some treatment. And under the law, 
States are supposed to be creative in trying to find charity 
care or some other place where women can get treated for breast 
or cervical cancer.
    In 1988, the study you did points out that treatment is a 
major issue for these programs and they have responded 
creatively, but States are concerned about the lack of 
treatment resources and the findings say it is very labor 
intensive to find treatment. Finding treatment services diverts 
resources away from the program, and the lack of treatment 
services negatively affects the recruitment and restricts the 
number of women to be screened.
    Can you talk about that fact, those numbers? It sounds to 
me like we are putting resources into trying to find treatment 
that could be used for screening more women.
    Ms. Lee. That is what that study of seven States said. 
Remember, those were extensive interviews with many providers 
and programmed people in the seven States. And that is what 
they felt. We have not quantified that amount that is diverted 
from--well, it is really diverted from reaching out and getting 
women to be screened into these other efforts. We have not 
quantified that, but we know that it happens.
    Mr. Waxman. This committee has looked at the changing 
nature of health care delivery, and more and more people are in 
managed care. There are studies, I think one was recently 
reported in the Journal of the American Medical Association, 
that there is less and less charity care being provided by 
providers who are part of managed care plans.
    Do you think that has impacted the ability to get services 
for women who are screened?
    Ms. Lee. That was definitely one of the findings of the 
study, that these providers and the State health department 
personnel told us that with the changing in the health care 
systems that are out there, fewer and fewer providers felt that 
they were able to have control, have autonomy over the decision 
whether, when and how much charity or reduced-fee care they 
could provide.
    So that is definitely something that we found in our study.
    Mr. Waxman. The chairman asked you questions about how 
successful the program is in finding treatment, and I think you 
indicated that it is reasonably successful in finding treatment 
for those who are screened. But the fact of the matter is, I 
think your statistic was that only 15 percent of eligible women 
are ever screened.
    Ms. Lee. Those are our estimates, yes.
    Mr. Waxman. Maybe it is because they don't want to know, as 
Dr. Coburn suggested, because of fear. Maybe it is because they 
don't have assurance that there is going to be treatment 
available to them because they are relying on hope for charity 
care. Maybe it is because a lot of resources that could be used 
for screening are being diverted to trying to call up all the 
various resources to see if care will be available for women 
who are screened.
    Are those three factors important in the fact that we see 
such a low rate of women being screened?
    Ms. Lee. No. I think the main factor is, the level of our 
current resources we have to give out to the States doesn't 
allow any more women to get screened.
    Mr. Waxman. Isn't that--maybe my question wasn't clear. You 
give out money to the States to screen women, but a lot of that 
money has to be used to look for treatment for those who are 
screened. So therefore----
    Ms. Lee. No, I think the majority of money we put out to 
the States is used for screening services.
    Mr. Waxman. A majority.
    Ms. Lee. Sixty percent must be.
    Mr. Waxman. That means 40 percent is being used for some 
other purpose?
    Ms. Lee. Correct.
    Mr. Waxman. If more than 60 percent was being used for 
screening, wouldn't you have a higher figure screened than 15 
percent of eligible women?
    Ms. Lee. Except one couldn't administer this program which 
is a comprehensive approach with all the money being paid for 
screening. We know that----
    Mr. Waxman. Because you have to find treatment for them?
    Ms. Lee. No, because we need to do public education, 
professional education, quality assurance, partnership 
development. There is a whole--we have to figure out ways to go 
out and bring women in for screening.
    Mr. Waxman. What percentage of the money is being used to 
seek out treatment?
    Ms. Lee. We have never quantified that. I can tell you that 
the additional funds that we have allocated for case management 
beginning in fiscal year 1999 will augment some case management 
funds that are there, and there are about 5 percent.
    Mr. Waxman. Just to conclude my time, and I appreciate the 
chairman's being tolerant, your own report said that it is 
labor intensive to find treatment and finding treatment 
services diverts resources away from the program.
    Ms. Lee. That is true. We have not quantified what 
proportion--how much that is, though.
    Mr. Waxman. And you also concluded the lack of treatment 
services negatively affects the recruitment and restricts the 
number of women screened.
    Ms. Lee. True.
    Mr. Waxman. So what are we arguing about?
    Ms. Lee. What is the most important reason.
    Mr. Bilirakis. Let us continue the argument in the second 
round.
    Dr. Ganske.
    Mr. Ganske. Thanks, Mr. Chairman.
    You know, I think a lot of us have been concerned about the 
uninsured, the 40-something million who are uninsured. And it 
seems to me that the testimony we have had today is another 
example of some of the reasons why in the larger population we 
have that many uninsured, too, and that is what I have heard is 
that a large number of women who would qualify for this program 
for the screening simply haven't heard about it. Is that right?
    Ms. Lee. I don't know the answer. We haven't--we haven't 
assessed that.
    Mr. Ganske. Did I not hear something to the effect that 
only 15 percent of those who are eligible take advantage of the 
program?
    Ms. Lee. Correct. That is because we can't--we don't have 
the funds to give the States any more.
    Mr. Ganske. Is it that, or is it that, you know, women who 
might take advantage of it haven't heard about the program? 
There are language problems? There are problems with 
transportation? There are problems with getting to the offices?
    Ms. Lee. All of those--those are all true and we--those are 
all barriers, and we believe those are important factors; but 
also true is that we can only give States $1 to $5 million a 
year to do this program, and in big States that doesn't even 
cover--it covers a very small proportion.
    Mr. Ganske. What are the income and resource eligibility 
requirements?
    Ms. Lee. They vary by State, but the CDC has capped it at 
250 percent of poverty or lower. Some States have much more 
strict requirements, so some States, it is at 250 percent of 
poverty. We also--these women must be uninsured or 
underinsured, so if they have Medicaid that can pay for a 
mammogram or Medicare that can pay for a mammogram, then they 
are not eligible for our program.
    Mr. Lazio. Would the gentleman yield for just a point?
    Mr. Ganske. Sure.
    Mr. Lazio. I have the statistics in the back, unless my 
statistics are wrong. The lowest percentage in terms of 
threshold that a State has is 150 percent. There are none below 
150 percent, but that is what I have, at least, in black and 
white in front of me.
    Ms. Lee. We can get that for the record.
    [The following was received for the record:]

    There are no State programs using an income eligibility 
criteria below 150%.

    Mr. Ganske. As I have looked at the total uninsured 
problem, about 25 percent of the uninsured are children. About 
half of those qualify--would qualify for Medicaid or CHIP, but 
they aren't enrolled, and for many of the same reasons, the 
barriers we just talked about. So it would seem to me there 
should be some strategies in addition to the funding that we 
would need to look at in order to address this problem.
    Now, maybe Mr. Lazio can help me on this, because I am a 
cosponsor of this bill, as is, I think, nearly everyone on the 
Commerce Committee, but the CBO's preliminary cost estimates of 
the Senate companion bill, I think is $315 million over 5 
years. Is that in the ball park?
    Mr. Lazio. First of all, it is a preliminary estimate in 
the Senate bill, and it is not--this bill has not been fully 
scored by CBO. And I can only tell you, if you--I can provide 
you the amount of women that are being diagnosed right now, 
which I can give on a State-by-State basis; but visually, you 
can take a look at it, and I can provide it to you later on, 
and you can make some judgment as to where you think the real 
cost is going to be.
    Mr. Ganske. So, at a minimum, we may be looking at doubling 
or tripling then the appropriations in order to make available 
treatment in addition to just diagnostic screening?
    Mr. Lazio. Well, first of all, you know, I don't think we 
have any basis for that until they issue some final numbers. I 
think that there is an anomaly between even the preliminary 
number, and if you look at the number of diagnoses that are 
occurring, how they get there, but we haven't had a chance to 
review that?
    Mr. Ganske. I would just ask Dr. Lee, having a rough idea 
of the expense ratios for diagnosis versus treatment, would 
that be in the ball park?
    Ms. Lee. That is not something that I have any expertise 
in. Sorry.
    Mr. Coburn. Would the gentleman yield?
    Mr. Ganske. I would be happy to yield.
    Mr. Coburn. One of the things that concerns me is that we 
have 11 million women identified who are not being screened. 
And one of the things we ought to think about doing is making 
sure we up the dollars for the program and hold it accountable 
to do that in an efficient manner, so that even though we are 
going to have treatment, we ought to find those women who need 
it, because right now the vast majority are not being found. 
One percent positive screening I believe is far less than the 
national average; is that not correct?
    Ms. Lee. My read of the literature----
    Mr. Coburn. On cervical?
    Ms. Lee. No, because cervical cancer is very rare. It is 
more common----
    Mr. Coburn. Your testimony was precancer.
    Ms. Lee. No, it is higher.
    Mr. Coburn. I would submit to the gentleman from Iowa, 
probably we ought to be increasing the program for this program 
as well as funding this bill.
    Mr. Bilirakis. The gentleman's time has expired.
    Mr. Green.
    Mr. Green. Thank you, Mr. Chairman. Dr. Lee, I think you 
obviously hit a deep pocket of concern by a lot of committee 
members. Again, most of us, I know, are cosponsors of the bill.
    One of the concerns I have--and I have some testimony here 
from a lady who is not scheduled to testify, Josefina Mondada, 
and her experience--Mr. Chairman, I would like to put her 
testimony into the record.
    Again, she is not--she is not on the witness list, but she 
was diagnosed, and she is in a rural part of Texas. I see 
Yancey, Texas. Of course, I am from Houston, and Yancey--I 
don't know where it is, but it is an hour from San Antonio. And 
she was actually working in a hospital. Her husband is 
disabled. She has $26,000 in bills, and their income--because 
her diagnosis and her treatment is only $1,100 a month. What 
concerns me is that in your testimony you talk about----
    Mr. Bilirakis. Is the gentleman asking to have that be made 
part of the record?
    Mr. Green. I will submit her testimony as part of the 
record, Mr. Chairman.
    Mr. Bilirakis. Without objection.
    [The information referred to follows:]
                 Prepared Statement of Josefina Mondada
    Good Morning. My name is Josefina Mondada and I am from Yancey, 
Texas. I was diagnosed with breast cancer in September 1998. I was 
working as a nurses' aide at night so I could care for my husband 
during the day who had a stroke in 1992 and suffers from diabetes. I 
did not have any health insurance when I discovered a lump. I was 
terrified and called my daughter who made arrangements for me to get a 
mammogram through the screening program where I live.
    The woman who helped me at the clinic asked how I would take the 
news if I had breast cancer and I told her I would take it as it comes. 
What I didn't realize was that as I fought breast cancer I would face 
so many obstacles to getting treatment and getting that treatment paid.
    A week after my mammogram I got the bad news. I was told I needed 
treatment. My case worker recommended that I get my treatment in either 
San Antonio, about an hour from my house or in Galveston, about 5 hours 
away. My caseworker did recommended that I not go to the doctor in 
town. I made a decision to try and get my care as close to home as 
possible. I first tried to get treated in San Antonio because it would 
be close enough to my home that I would be better able to care for my 
husband. Unfortunately I was told I did not qualify for services in San 
Antonio because they did not provide services to anyone who did not 
live in that county.
    I decided to go to the local doctor despite my case worker's 
concerns. I just could not leave my husband for the extra time I would 
need to go to Galveston. After my surgery, I developed an infection. I 
went in to see my doctor and 3 or 4 days later he told me I needed to 
go back in for another surgery--that there was more cancer that they 
didn't find the first time.
    It was then that the bills from the doctors started to pour in. 
Luckily the hospital only asked me to pay 20%, but I have received 
bills for all my other treatment, including the two surgeries, the 
chemotherapy, radiation, pathology. At this point I have accumulated 
more than $26,000 in bills I am unable to pay.
    I tried to get Medicaid but was turned down--and there is still no 
coverage. What if I have to go back into the hospital or have any more 
treatment? What then? I don't know what I will do?
    Our income--$704 from social security disability and $297 from my 
husband's retirement--doesn't cover our expense now that I am unable to 
work. What isn't spent on essentials goes to control my husband's 
diabetes. The doctor won't allow me to work and I am afraid that I am 
too weak to take care of the patients in the nursing home where I 
worked.
    Mr. Chairman, members of the Committee, I feel lucky I got treated, 
but that is only one part of the story. I worry every day about how to 
pay these bills. I simply don't have the money.
    I don't want to be a burden to my family or my children. I really 
can't bear that. But what was my choice? Not to find out whether I had 
breast cancer? Not to get treated?
    Thank you.

    Mr. Green. Ninety-two percent of the women diagnosed with 
breast cancer and invasive cervical cancer initiated treatment. 
I know from experience in my own district in Houston, and hers 
is not too much different, that she now has $26,000 worth of 
bills. She has no insurance and even as a hospital employee, 
they only required her to pay 20 percent for her--for the 
hospital costs, but she had this other cost.
    And that 92 percent included--would include someone like 
Ms. Mondada?
    Ms. Lee. I am not sure. If she initiated treatment, it 
would be in there. That is all that that statistic discusses.
    Mr. Green. One of the other questions I have, and I know in 
later testimony from Ms. Braun that she talks about the quality 
of treatment they receive should be the highest possible, and I 
know in my own office in Houston, oftentimes we get calls from 
constituents who--women who have managed care plans, and they 
question the quality of the treatment they are receiving. Of 
course, in Houston, Texas, we have M.D. Anderson as a State 
hospital, and it is a facility--in fact, it is a self-referral 
facility; you can self-refer yourself without your local 
doctor, but it is a long way from home.
    Do you know--again, 92 percent receive some type of 
treatment, but there is no information on the quality of the 
treatment.
    Ms. Lee. Correct, and that is very difficult to come by for 
any--for anybody in this country trying to decide that.
    Mr. Green. Let me ask--and again, being from Texas, and I 
know when I was in the legislature, there are a lot of Medicaid 
programs that States do not take advantage of because, again, 
to raise the State funding for it, they will just let it go 
back.
    How many States do you think would participate in a program 
like this bill would call for?
    Ms. Lee. I have no idea.
    Mr. Green. How many States--do we have any comparable 
program now for Medicaid that the States would buy in----
    Ms. Lee. Again, this is not at all my area of expertise.
    Mr. Green. Again, the frustration I remember as a State 
legislator, there were a number of Medicaid programs we could 
have provided, a very small percentage, and the States make 
that decision not to do it.
    Obviously, the residents of those States are the ones 
losing it, but except for the recent history in the State of 
Texas, we had a surplus, but in the past we had deficits. And 
so even making this bill available, what this bill calls for, I 
am concerned that some States won't even take advantage of it 
for that.
    Mr. Chairman, I will yield back my time, but those are some 
of the concerns I have.
    Mr. Bilirakis. I thank the gentleman.
    Mr. Barrett.
    Mr. Barrett. Thank you, Mr. Chairman.
    It is unclear to me from your statements as to whether you 
oversee the entire program or simply the breast detection part 
of the program.
    Ms. Lee. No, it is both the breast and cervical. They are 
of a piece, and our hope is that for women for whom it is 
appropriate, that women receive both screening tests through 
the program if they need it.
    Mr. Barrett. And from the questions that Mr. Coburn had and 
his frustration with the cervical portion, is there another 
individual who has greater information in what is being done 
there?
    Ms. Lee. Absolutely. The division of STDs--they have a long 
name, but it is basically the STD division, the Sexually 
Transmitted Disease division, is another part of CDC, another 
center; and they have the responsibility for human papilloma 
virus prevention of STDs.
    Mr. Barrett. So none of the money from this program, 
though, is spun off into that program?
    Ms. Lee. No, but we are cooperating on a demonstration 
project which we hope--we have already developed with them a 
demonstration project protocol, and we are hoping next year to 
do a program through STD clinics to see if STD clinics are a 
good place to screen women for cervical cancer.
    Mr. Barrett. Maybe that ties into my next question, because 
it would seem to me that your target group is going to be 
different for breast cancer and cervical cancer.
    Ms. Lee. To a certain extent it is.
    Mr. Barrett. Your program, because of resources, is geared 
more toward postmenopausal women, so again I am assuming that 
that is not the same target group that you are going to be 
going after.
    Ms. Lee. We provide screening services for cervical cancer, 
for Pap smear screening services for young women as well, and 
so if you want to know our target population for women for Pap 
screening are women who are sexually active or 18 years or 
older.
    For breast cancer screening, our target starts at age 40, 
and then we end pretty much at 65 because those women are 
covered by Medicare. We encourage even the cervical cancer 
screening program to reach out to older women because Pap 
screening is available through other Federal programs to 
younger women through Title V, Title X, et cetera. So there are 
other Federal moneys available to screen young women with Pap 
smears, but we screen women of all ages for Pap smears.
    Mr. Barrett. Again, for this program, your target audience 
is the older women?
    Ms. Lee. Generally, but then we also screen younger women 
with Pap smears, but they are not our target.
    Mr. Barrett. The actual screening, where is it done?
    Ms. Lee. You name it. It is all over. States set this up; 
it varies in States. It can be in health departments, private 
physicians' offices, hospital clinics, migratory health 
clinics, YWCAs, all kinds of places.
    Mr. Barrett. So you send the money to the State?
    Ms. Lee. We send the money to the States, and the States, 
depending on how it best works for them in their State, they 
contract with different--subcontract with different providers 
in their States; and the providers can be many, many different 
forms.
    Mr. Barrett. The outreach is also contracted with the 
State?
    Ms. Lee. We give the money to the States through a 
cooperative agreement mechanism, and the States do all of the 
real work; and we provide oversight and technical assistance 
and guidance.
    Mr. Barrett. Okay. For the outreach for the cervical 
cancer, what type of outreach is generally done?
    Ms. Lee. Again, it is all kinds of things. And this would 
be for breast as well. We are trying to--we are targeting the 
high-risk women and the women who are otherwise not getting 
screened, and we know that minority women and older women fall 
into those categories. So we go to all different places. We go 
to churches, to beauty salons, to migrant health centers, to--
there are all kinds of networks that States and local----
    Mr. Barrett. When you say ``we,'' you don't mean CDC?
    Ms. Lee. The program does, which really means the States 
and their contracted providers.
    Mr. Barrett. The concern that I have in a way echoes some 
of the questions that Mr. Coburn had, and that is how best to 
deal with the HPV problem, because it does appear that if you 
can deal with that early on, you are going to have a high 
degree of success. And I would offer, Mr. Coburn, if we think 
we need to put more money in that program, I am more than happy 
to work with you to put more money in that program because the 
numbers are pretty amazing. And maybe if we haven't done so 
already, we can have someone up here to talk about that 
specific program.
    What do you think we should be doing for that specifically? 
If we can cure this disease by catching it, what should we be 
doing?
    Ms. Lee. Well, it is very, very important and all kinds of 
studies indicate that an important risk factor on cervical 
cancer is not being screened. So we are providing that, because 
if we screen it and catch the precancerous lesion before it 
turns into cancer and treat it, then they are not going to get 
cervical cancer. That is one important thing.
    I am not an expert, but I know the National Cancer 
Institute is supporting research on vaccines for HPV, and it is 
promising. They are certainly in the research phase, but if you 
can give people a vaccine to prevent acquiring serious HPV, 
then that would be good, too.
    Mr. Barrett. I would just assume very quickly, if I could, 
Mr. Chairman, that your highest incidence of increase in HPV is 
going to be among more sexually active women, which are going 
to be younger women; and that is not the group your program is 
targeting. I don't say that as a criticism; I say that as an 
observation.
    Ms. Lee. That is because we believe there are other Federal 
programs available to reach them and we know that they have 
much higher rate of recent Pap screening than older women.
    Mr. Barrett. Thank you.
    Mr. Bilirakis. Ms. DeGette.
    Ms. DeGette. Thank you, Mr. Chairman. I would like to 
clarify the record a little bit.
    I don't think anybody intentionally implies in these 
hearings that women are reluctant to seek Pap smears or breast 
cancer screening as opposed to, say, men seeking treatment for 
prostate cancer, but in my experience, people--anybody who is 
fearful that they may have a cancer, a skin cancer or a breast 
lump, or something like that is going to be fearful about going 
in for screening, especially if they don't have insurance.
    Congressman Green talking about the Texan woman, Ms. 
Mondada, you know, people without insurance know that if they 
go in for screening and they have a cancer, they are going to 
be out tens of thousands or hundreds of thousands of dollars 
and that, in fact, it may bankrupt them; and so that adds to 
the natural fear of people going in.
    I am wondering as we are seeing--I am wondering if you are 
seeing people in your outreach who are reluctant to come in for 
screening exactly for those economic reasons, even if there may 
be charity care available in their States?
    Ms. Lee. We are told anecdotal reports from our program 
directors that this sometimes happens. It is documented in the 
study that we have alluded to that this is one of the barriers 
that they have. We at CDC have no other data than what we have 
obtained from the studies that we have alluded to.
    Ms. DeGette. Is there anything you think can be done 
differently in outreach to try to increase the numbers of 
people coming in for voluntary screening by overcoming those 
fears, either just the natural fear of having cancer or the 
financial fear of what diagnosis--or what treatment, in 
particular, will do?
    Ms. Lee. Outreach is not the actual implementation and how 
you do outreach is not an area of expertise of mine, but I have 
talked with people who have. There is a lot of research that 
has been funded by the National Cancer Institute, for example, 
and then we know in our program that there is lots of effort at 
the local level to address those fears. The fear of finding 
cancer is very much one of the barriers that is identified over 
and over again, and our outreach workers in our States have 
developed strategies to address those fears.
    Ms. DeGette. I know there are strategies, but yet you still 
have a small percentage who, for whatever reason, aren't coming 
in; or actually you have a fairly large percentage who aren't 
coming in.
    Ms. Lee. I think that is mainly because we don't have the 
dollars to do any more.
    Ms. DeGette. So you don't think that there is anything that 
can be done to improve outreach?
    Ms. Lee. Oh, I think there is plenty that can be done. We 
can always do better.
    Ms. DeGette. Can you give me a couple of specific examples? 
Maybe you can supplement your testimony.
    Ms. Lee. Thank you.
    [The following was received for the record:]

    Outreach within the National Breast and Cervical Cancer Early 
Detection Program (NBCCEDP) is utilized to educate and motivate at-risk 
women to seek breast and cervical cancer screening and to minimize the 
barriers which impede access to these services for underserved 
populations. Both mammography and Pap tests are underused by women who 
are members of racial and ethnic minority groups, have less than a high 
school education, are older, or have low income. Studies have shown 
that these populations may not access preventive health care services 
if appropriate interventions are not provided. Many of the women who 
participate in CDC's program face significant barriers which diminishes 
their ability to obtain or understand the importance of these life 
saving services. Therefore, to be able to serve this population 
effectively, the program must minimize barriers through outreach 
activities by providing counseling, public information, education, 
translation services, and transportation.
    CDC has developed a training on Outreach Strategies for Older 
Medically Underserved Women that has been provided to all State, tribe 
and territory programs funded through the NBCCEDP. The overall goal of 
the training program is to provide public education coordinators and 
outreach workers with the knowledge and skills to plan, select, and 
evaluate effective outreach strategies. Additional trainings for all 70 
breast and cervical cancer programs funded by CDC are being provided 
over the next two years. CDC is also developing a train-the-trainer 
program to instruct local public education coordinators how to train 
other education and outreach workers on how to implement and evaluate 
local outreach efforts.
    Each funded program provides outreach services based on the 
specific needs of their eligible population. With CDC's leadership, 
state-based programs have made significant progress in building state 
and community partnerships to reach women about the benefits of 
screening and early detection. Various outreach activities have been 
designed to educate women and motivate them to be screened. For 
example:
     New Jersey's state health department is collaborating with 
the University of Medicine and Dentistry of New Jersey and the YWCA to 
reduce screening barriers by offering educational outreach and access 
to screening. Program staff make monthly visits to senior housing 
complexes and other settings where women congregate (e.g., beauty 
parlors and supermarkets) to present an educational program designed 
for minority women aged 50 and older.
     Nebraska's Breast and Cervical Cancer Early Detection 
Program is concerned about cervical cancer in Vietnamese woman, who 
have the highest rate of cervical cancer of any ethnic group in the 
United States. In Hastings, Nebraska, the program sent letters, in 
Vietnamese, inviting all Vietnamese women 18 and over to the local YWCA 
to learn more about cervical cancer and to receive referrals for 
screening services. Female interpreters were on hand for this event and 
during subsequent clinic visits.
     Arkansas' ``Hats Off to Health'' is a light-hearted but 
informative skit in which characters confront reasons women often give 
for not having breast cancer screening. Over 600 women have attended 
the program; surveys found that this nonthreatening approach to breast 
cancer screening education was effective in reducing perceived barriers 
to mammography.
     Massachusetts' Breast and Cervical Cancer Initiative has 
established partnerships with a variety of community agencies already 
active in conducting outreach in racial and ethnic minority 
communities. Using a health circle model, groups meet in spaces that 
are familiar, accessible, and comfortable (e.g., homes, churches, and 
local agencies such as immigration offices). The health circle model 
has proved especially successful in promoting screening among older 
Southeast Asian women.
    In addition to NBCCEDP, CDC funds a strong and effective network of 
partners that are well-positioned in communities at risk. These 
partners have developed projects that are focused on underserved 
populations and cover a wide range of public and professional education 
interventions. Projects include developing low-literacy, bilingual, and 
culturally appropriate educational materials that are used in diverse 
training and outreach programs and educational campaigns. The various 
interventions used by the different projects result in the common goal 
of increasing access to and use of screening services for priority 
populations.
    CDC funds the following partners to promote screening among 
populations at higher risk: American Social Health Association; 
Association of Asian Pacific Community Health Organizations; Baylor 
College of Medicine, Salud en Accion Program; Institute for the 
Advancement of Social Work Research; Mautner Project for Lesbians with 
Cancer; National Asian Women's Health Organization; National 
Association of Community Health Centers; National Caucus and Center on 
Black Aged, Inc.; National Center for Farmworkers Health, Inc.; 
National Education Association Health Information Network; National 
Hispanic Council on Aging; U.S. Conference of Mayors' Research and 
Education Foundation; The Witness Project; and World Education.
    CDC will continue to evaluate, expand and promote outreach services 
as resources will allow.

    Ms. DeGette. Thank you, Mr. Chairman.
    Let me ask a different question, which is I am wondering 
if--with the growing managed care system we have in this 
country, if you are having problems finding charity care 
providers to help implement this screening program. I know a 
recent JAMA article says there is a decline in charity care 
among providers in places where there is a high degree of 
managed care. Are you seeing this as well?
    Ms. Lee. We have been told and that is documented in the 
report that that is one of the concerns that our States have is 
with the increasing changes in the health system. They are 
finding it more and more difficult because doctors have less 
autonomy about what, when and where they can provide charity 
care.
    Ms. DeGette. Do you find this to be true across the board, 
or are there regional or rural versus urban issues?
    Ms. Lee. We do not have information at that level of 
detail.
    Ms. DeGette. Just one last question. I had thought that 
your program only screened women for breast cancer who were 
over the age of 50, and I thought I just heard you say you are 
doing over age 40.
    Ms. Lee. We have always done over the age of 40. There was 
some--there has been--of course, as you know, there has been a 
big controversy in screening women 40 to 49. In 1994, we put 
out an official policy that encouraged our States to--of their 
breast cancer screenings to have 75 percent of them be among 
women 50 and over, and then the remainder could be for women 40 
to 49.
    Ms. DeGette. Higher-risk women?
    Ms. Lee. Higher-risk women.
    Ms. DeGette. Thank you. Thank you, Mr. Chairman.
    Mr. Coburn. Mr. Chairman, I would just have a request to 
enter into the record, coming from the CDC, data that from 1990 
to 1999 the screening program has screened 1.3 million women at 
a cost of $899 million.
    Mr. Bilirakis. Without objection, it is part of the record. 
And I would say that we will be submitting written questions to 
follow up. I know Ms. DeGette and others have mentioned it and 
I know you won't mind receiving those, Dr. Lee, and responding 
to them.
    We are advised that we will have three votes, which should 
take between 35 and 40 minutes at least. So, I am hoping we can 
release Dr. Lee before we break for those votes and hopefully 
during that break, we can grab a quick sandwich, and then can 
go right into the second panel.
    As a second round, I have just one very brief question. I 
think it is important.
    In the legislation before us, should we emphasize, and I 
hate to use the word ``mandatory,'' but in a mandatory sense to 
the States that might pick up this program, and add this to 
their Medicaid program in terms of case management? The 
significance of case management being what it is, should we 
basically require the States who choose to go into this program 
to create a case management type of a system so that we can 
ensure access to treatment?
    Ms. Lee. I can't specifically address what you need to do 
in this bill because, again, that is not something that I am an 
expert in. But I will tell you that our program, as it exists, 
has as a feature, an integral feature, case management. We are 
providing additional funds to the program this year from the 
1999 budget to augment their already-existing case management 
budget.
    So case management is an integral part of our program, the 
NBCCEDP.
    Mr. Bilirakis. Do you feel it should be an integral part of 
the State programs?
    Ms. Lee. That is what I mean. It is an integral part of the 
State NBC programs as we already fund them.
    Ms. Eshoo. Mr. Chairman, would you yield just for a moment?
    Mr. Bilirakis. I would be glad to yield.
    Ms. Eshoo. First of all, obviously we have Medicaid laws on 
the books, but specifically to this bill, we stayed away from a 
mandate. There is not a mandate in this bill. What it does is--
what we tried to do is to motivate States to do more of what we 
are advocating for, and therefore with that motivation and the 
carrot, rather than a stick; so there is not a mandate in it.
    Mr. Bilirakis. With the high percentage of Federal dollars 
involved here, though, the States would be receiving a much 
higher percentage than they ordinarily receive under----
    Ms. Eshoo. It is a 75/25 split of funds.
    Mr. Bilirakis. I am wondering if there shouldn't be some 
direction, in that regard. That is something we can talk about 
as we go along. All right.
    Mr. Brown?
    Mr. Brown. I have no further questions, and I think we want 
to get on with the second panel.
    Mr. Bilirakis. Mr. Lazio?
    Mr. Lazio. I just had one question because I know that 
twice Dr. Lee referenced this California pool of money $12.8 
million, and I saw that in your written testimony.
    I also saw in your written testimony the last line which I 
didn't hear in your oral testimony. Maybe I just didn't hear 
it, but it says, ``Unfortunately, this fund is nearly 
depleted.'' so it is a one-shot fund, almost entirely depleted, 
and I just would not want to leave anybody with the impression 
that it is in any way sustainable and that again you are going 
to have to find care that is tantamount to $13 million that may 
not be found, and you may have more women in California 
continuing to slip through the cracks.
    Mr. Bilirakis. I thank the gentleman.
    Any further brief questions of Dr. Lee before we adjourn 
this panel?
    Thank you so very much, Doctor. I appreciate your coming up 
here. You have been a lot of help. We will be checking back 
with you.
    Ms. Lee. I can't imagine you wouldn't.
    Mr. Bilirakis. All right, the second panel, if they will 
start to come forward.
    Ms. Fran Visco; President of the National Breast Cancer 
Coalition; Susan Brown, President and CEO of the Susan G. Komen 
Breast Cancer Foundation out of Dallas, Texas; Ms. Carolyn 
Tapp, President, Women of Color of Breast Cancer Survivors 
Support Project out of Los Angeles; and Dr. Stanley Klausner 
from Sayville, New York.
    Again, your written statements are a part of the record. 
You will have 5 minutes to present your oral testimony, just 
supplementing if you will or complimenting your written 
statements.
    We will start off with Ms. Visco.

  STATEMENTS OF FRAN VISCO, PRESIDENT, NATIONAL BREAST CANCER 
 COALITION; SUSAN BRAUN, PRESIDENT AND CEO, THE SUSAN G. KOMEN 
  BREAST CANCER FOUNDATION; CAROLYN TAPP, PRESIDENT, WOMEN OF 
  COLOR BREAST CANCER SURVIVORS SUPPORT PROJECT; AND STANLEY 
                            KLAUSNER

    Ms. Visco. Thank you very much, Mr. Chairman. Thank you for 
your support of this legislation, for holding this hearing; and 
I also for your work on the Mammography Quality Standards Act.
    I also want to very much thank Mr. Lazio and Ms. Eshoo for 
introducing this bill and for all of the members of the 
committee who are cosponsors and certainly the more than 260 
Members of the House who are now sponsoring this bill.
    The many members of the National Breast Cancer Coalition 
are thrilled that we all share the same goal, and that is to 
make certain that these women are treated and treated in a 
timely manner and that there is a system of care that they have 
access to.
    Now, I have had breast cancer. I am a breast cancer 
survivor. I was diagnosed in 1987 when I was 39 years old. But 
I was very fortunate. I was also a partner in a law firm. I had 
access to quality medical care. But I can tell you the 
incredible pain, the worry, the fear, the anxiety, the not 
knowing which way to turn that I went through.
    I can only imagine what women like Josefina go through, 
women like Mary Lee Matthews, who recently died of breast 
cancer and who was diagnosed through the CDC program and who 
had a very difficult time finally finding some treatment for 
her disease. I can only imagine what they go through. And I 
know that we are all here to make certain that we have no more 
Josefina that or Mary Lee stories.
    You know, this issue bubbled up to the National Breast 
Cancer Coalition. Our membership is more than 500 organizations 
across the country, more than 60,000 individuals. And these 
organizations run support groups. They run outreach programs. 
They are educators. They are organizations that are involved in 
breast cancer and women's issues. They are hospitals. They are 
500 organizations, and many of them contacted us about this 
incredible problem that they were having.
    We heard story after story of my own organization in 
Philadelphia, the Linda Creed Breast Cancer Foundation, having 
to spend so much of its time finding and begging for charity 
care for women, finding and begging women to write checks to 
help get money to find treatment for these women. What they 
asked us to do is help find a system, a system of care for 
these women, a continuous system of care.
    Jan Eick-Swigart was a well-to-do woman from California who 
had breast cancer. She died of her disease a couple years ago. 
But she spent the last 18 months of her life researching this 
issue, looking at various ways we can address the fact that 
there is a government program, a public health screening 
program, that has a gap, that is not whole, that has no 
treatment component attached to it. And she is the one who 
really brought to us the idea that finally became H.R. 1070 
after much work, much analysis and much research. So I am 
really here in her memory and tribute to the work of Jan Eick-
Swigart.
    I know that we have highlighted to some extent the problems 
in the program as it exists, not in the screening program. We 
all think the screening component is a wonderful program. It is 
doing incredible work, and the people who are involved in that 
program are incredibly committed to our shared goal. But the 
study that the CDC funded tells us the problems. And, again, 
these problems were recognized by, as the study says, the 
experience and opinions of informed professionals affiliated 
with the program, and not the perspective of clients.
    While they strongly supported continuing growth of the 
screening, they expressed several concerns: the considerable 
time and effort involved in developing systems for diagnostics 
and treatments; the process of identifying available resources 
within States; the lack of coverage for treatment services that 
negatively effected recruitment of providers. And they agreed 
that there are an increasing number of health care providers 
who are less likely and less willing to give charity care; the 
fact that there are women who do not come in for screening 
because they don't know what they will do for treatment; the 
fact that we want to have more screening, but that is going to 
increase the problem that we have to correct while we correct 
the treatment problem.
    The perspectives of the clients are what I want to briefly 
bring you.
    I want to tell you that we hear from our member 
organizations who have actually held bake sales to raise money. 
They put together quilts and sold them to raise money to get 
treatment. But these women initiated treatment in this survey.
    Mr. Bilirakis. Please summarize, Fran. I am sorry, but the 
bells have already rung.
    Ms. Visco. I will summarize. And I think Josefina's 
testimony summarizes it for all of us, and there are many like 
her. These women initiated treatment, but they are sitting with 
second mortgages and third mortgages. They are sitting with 
$40,000 in bills, with creditors knocking on their door. They 
are sitting with--begging the health care community to help 
them; and the health care community wants to, but the evolving 
health care system is harming them and is stopping them from 
doing this.
    This is our opportunity to tell women and let them know we 
truly do share the goal of decreasing morbidity and mortality 
for women with breast cancer and cervical cancer by making this 
act law. That is the goal here. The goal is to get 1070 into 
law.
    And I thank you very much for helping us do that.
    [The prepared statement of Fran Visco follows:]
  Prepared Statement of Fran Visco, President, National Breast Cancer 
                               Coalition
    Thank you Mr. Chairman, and members of the Committee for inviting 
me to testify today. I am Fran Visco, President of the National Breast 
Cancer Coalition, and a breast cancer survivor. I am one of the 2.6 
million women living with breast cancer in the U.S. today.
    The National Breast Cancer Coalition (NBCC) is a grassroots 
advocacy organization dedicated to eradicating breast cancer. We are 
made up of 500 member organizations and more than 60,000 individual 
women, their families and friends. NBCC seeks to increase the influence 
of breast cancer survivors and other activists over public policy in 
cancer research, clinical trials, and access to quality health care for 
all women.
                               background
    The National Breast Cancer Coalition has made passage of H.R. 1070, 
the Breast and Cervical Cancer Treatment Act, a top priority. As you 
know, this legislation would establish a federal treatment component 
for the Centers for Disease Control and Prevention's (CDC) National 
Breast and Cervical Cancer Early Detection Program (NBCCEDP) that 
Congress enacted as part of the Breast and Cervical Cancer Mortality 
Prevention Act in 1990. That program--which has screened more than one-
half a million women for breast cancer--does not provide any federal 
resources to pay for the treatment when women are diagnosed with breast 
or cervical cancer. Instead, Congress asks participating states to 
assure that the women who are screened get the treatment they need.
    The fact that the CDC Early Detection Program does not cover any 
costs of treatment for breast and cervical cancer has created a very 
serious public policy gap. State and local providers and women 
themselves have been left to scramble for resources to pay for 
treatment. Women are relying on charity and donated care when it is 
available and sometimes going into debt when no public or private 
dollars can be found. The NBCCEDP is a program dedicated to serving 
low-income women, but at times fails to come through.
    Let me be perfectly clear. The individuals who run this program and 
the thousands of volunteers who help find women treatment do all that 
they can everyday to ensure that patients diagnosed through the program 
get the treatment they need. It is the people who do the screening and 
spend countless hours trying to find treatment who have identified the 
problems with a system that lacks a treatment component. It is the 
system that is broken, and we need to fix this problem so that they can 
screen more women, and not have to spend the majority of their time 
finding treatment services.
                        what h.r. 1070 would do
NBCC-Personal Stories
    Not long after the CDC screening program was enacted into law, Jan 
Eick-Swigart, an NBCC advocate from California, launched an effort to 
guarantee treatment for women screened and diagnosed with breast cancer 
through the federal program.
    Prior to losing her battle with breast cancer, Jan wrote a 
compelling memorandum on the need for a federal treatment component to 
CDC's Early Detection Program. Her memorandum states:
    ``One of the heartbreaking ironies about the BCCEDP and other 
programs that offer underserved women free or low cost mammography is 
the lack of resources to treat the women who are diagnosed with breast 
cancer as a result of these programs.''
    In the years following Jan Eick-Swigart's efforts to ensure that 
women screened and diagnosed with breast cancer through CDC's federal 
program are guaranteed treatment through Medicaid coverage, many NBCC 
advocates have reaffirmed the need for a federal treatment component to 
this program. Our members have witnessed the delay that can result from 
having to scramble to find treatment--and the physical and emotional 
result that delay has on women screened and diagnosed through the 
program.
    A woman in Florida had to wait 5 months before a volunteer found 
her treatment dollars. This woman had five agonizing months of knowing 
she was sick and having no way to get the treatment she so desperately 
needed.
    Moreover, we have heard from women who ultimately got treatment, 
but were then saddled with medical bills that they couldn't pay. 
Instead of focusing on getting well, these uninsured women have had to 
focus on how they are going pay for their care.
    A woman in Massachusetts, for instance, has already spent her 
children's college fund for her treatment and is paying off more than 
$20,000 in medical bills. Her story is incorporated in a statement from 
Mary Ann Waygan, coordinator for the CDC Breast and Cervical Cancer 
Initiative for Cape Cod, Massachusetts. (Mr. Speaker, may I introduce 
this statement into the record?)
    A woman in New York said that during her treatment, it seemed that 
her conversations with her doctors were more about the bills than how 
to save her life.
    There are other women who after having a mammogram find out they 
need follow-up diagnostic services but refuse to get them. They do not 
want to know they have cancer without knowing exactly where the 
treatment dollars come from.
    A woman from Virginia explained she ``feels that if she is not 
diagnosed it is better because she will not have to worry about 
treatment.''
    A woman from Maine had an initial mammogram through the NBCCEDP 
program and the results were ``highly suggestive of malignancy.'' Due 
to the cost, rather than pursue a biopsy and the treatment, which may 
have been needed, the client decided to wait and have a repeat 
mammogram in six months.
    Surely, these scenarios are not what Congress intended when it 
enacted the National Breast and Cervical Cancer Early Detection Program 
into law. Yet, these scenarios are the reality of what happens when 
women are screened and diagnosed with breast and cervical cancer 
through a federal program that does not guarantee federal treatment 
coverage.
CDC-Case Study
    NBCC is not alone in our belief that the CDC Early Detection 
Program needs a system that provides sufficient funding for treating 
women. In response to concerns about treatment raised across the 
country (and raised by advocates like us), CDC conducted a case study 
which illustrated a similar conclusion. The study focused on 
participating states (California, Michigan, Minnesota, New Mexico, New 
York, North Carolina and Texas) and looked at the treatment following a 
diagnosis of breast or cervical cancer through the program.
    The results of that study, released in January 1998, found that 
although treatment had been initiated for most of the women in whom 
cancer was diagnosed, the system of treatment is ``tenuous and fragile 
at best.''
    (Mr. Chairman, may I introduce the report which summarizes the 
results of the study into the record?)
The Numbers Don't Tell Us the Whole Story
    I want to make very clear that the issue is not just that some 
women don't get treated. We have had to look beyond the numbers to find 
the real story. It is behind these numbers that the story exists--the 
story that women from all over the country come and talk to me about. 
It's the story that CDC's own study underscores. The story of women--
diagnosed with breast and cervical cancer--wondering how and whether 
and when they'll find treatment for their disease, and then often left 
with a lifetime of bills to pay for that treatment.
Lack of Treatment Funding Is Diverting Resources Away From the 
        Screening Program
    There are several findings that are very telling in the conclusions 
of CDC's study. First, the study highlights the considerable time and 
effort involved in developing and maintaining systems for diagnostic 
follow-up and treatment. It illustrates the labor-intensive process 
required to identify resources within states to provide diagnostic and 
treatment services.
    NBCC has heard about the serious problems people who run the 
screening programs across the country have in finding treatment for 
women diagnosed through the program. The hours spent searching for 
treatment are diverting resources away from the screening program. As a 
result, fewer women are being screened. This is very serious--the 
program currently serves only 12% to 15% of age eligible, uninsured 
women nationally.
    The threat that the lack of treatment funding poses--not only to 
the woman who have been diagnosed through the program--but also to the 
women who may rely on the screening services in the future--is lethal. 
This is the story behind the numbers.
    It is our hope that in enacting a Medicaid option for these women, 
they will be presumed eligible for Medicaid on the first day that they 
are diagnosed. This way--they know they'll get the immediate care they 
need instead of facing delays and wondering how and whether they'll get 
treated. This way--program coordinators can focus their efforts on 
increasing the number of women they are able to screen for breast and 
cervical cancer.
In the Context of an Evolving Health Care System
    Second, the CDC study puts this issue in the context of an evolving 
health care system. The study highlights what we too are hearing from 
our advocates around the country, and what Dr. Stanley Klausner has 
testified about today--an increasing number of physicians who do not 
have the autonomy, because of the changes in the health care system, to 
offer free or reduced-fee services to NBCCEDP clients.
    Mr. Chairman, I point you to a letter from Robert Brooks, MD, 
Secretary of the Department of Health for the Florida Department of 
Health and Human Services.
    (Mr. Chairman, may I submit this letter for the record?)
    In his letter, Dr. Brooks writes, ``We are starting to see the 
strain our providers are experiencing through their support of the 
program...One county program had had three women diagnosed with breast 
cancer during their first two years in operation; each one cared for by 
a different provider. Since October, 1998, five additional women have 
been diagnosed and approximately 10 to 15 more have abnormal clinical 
breast exam or mammogram results and could be diagnosed with cancer. 
Needless to say, the providers are concerned with these increasing 
numbers. Some of the providers have asked the local program coordinator 
not to refer additional patients to them for the remainder of this 
program year . . .''
    ``. . . Another county program has seen a total of 10 women with 
cancer and they have two to three physician providers and one hospital 
provider who agrees to see program clients. Three providers have also 
expressed alarm at the number of women with abnormal exams who are 
referred to them for care. We have been told that these current 
providers may not be willing to support the Program when this county 
renews their program agreement this October . . .''
    And the stories go on.
    Dr. Brooks concludes with the fear that Florida's providers 
continue to show signs of abandoning this program unless they are 
provided with some assistance that is not available through the CDC 
grant.
    Florida, a state with the highest degree of managed care 
penetration in the country, is perhaps one of the best (but certainly 
not the only) example of a situation where the lack of availability of 
treatment can only get worse, and where any attempts to expand the 
screening program are hindered.
    It is important to note that as managed care continues to expand 
across the country, more and more doctors may have less autonomy to 
provide the charity care relied on by NBCCEDP coordinators. To 
illustrate this point, a recent survey based on 12,000 U.S. physicians 
was published in the April 1999 issue of the Journal of the American 
Medical Association. The study finds that doctors whose income depends 
most heavily on health maintenance organizations and other managed-care 
health plans, on average, devote only half as much time to charity care 
as do their colleagues who don't participate in managed care.
    What will this mean for the people who run the NBCCEDP programs who 
are already spending countless hours searching for treatment for women 
diagnosed with breast and cervical cancer? What will this mean for 
women who are already suffering a delay in treatment? Or who are 
saddled with treatment bills they can't pay? Or who are reluctant to 
get screened because they ``prefer not to know'' if there is no 
treatment available?
    What will this mean for the ability of the National Breast and 
Cervical Cancer Early Detection Program to sustain itself?
Precedent in the Medicaid Program
    Respondents in CDC's study suggest a similar solution to the lack 
of funding for treatment that we bring before you today--a solution 
that passage of H.R. 1070 would guarantee. That solution is a provision 
of treatment services assured through a federal ``Medicaid option'' 
which would give state Medicaid programs permission to allow 
eligibility to BCCEDP clients who are diagnosed with cancer through the 
program. This would include those women who are eligible for BCCEDP 
services but whose incomes and/or assets exceed Medicaid limits.
    There is a precedent for covering participants in the Breast and 
Cervical Cancer Early Detection Program under Medicaid. In 1993, 
Congress created the Tuberculosis Optional Benefit Program, making 
individuals who are infected with tuberculosis eligible for Medicaid.
    Mr. Chairman, and Members of the Committee, as the stories of 
NBCC's advocates and as the results of CDC's own study show--what we 
have today is an ad-hoc system that is incapable of serving the future 
needs of the program and the women it serves. Solutions in the vast 
majority of states are short-term, tenuous and fragile. The fact that 
so many women eventually get treated reflects the dedication of 
providers and volunteers who spend enormous effort and time to find 
treatment services. Yet, while the majority of women get care, there is 
no system of care. As a result, some women experience unnecessary 
delays or are lost to follow-up care, and a few don't get treated at 
all.
    Our message is not to put an end to the screening program. It is to 
finish the work Congress initiated in 1990 by adopting a treatment 
component that will serve all the women screened and diagnosed with 
breast and cervical cancer through this program.
How This New Treatment Program Would Work
    Enactment of H.R. 1070 would allow the women who are eligible for 
the CDC Early Detection program--that is women who are between 200% and 
250% of poverty depending on their state and who are not already 
insured--to receive their treatment through the state Medicaid program. 
States would not be required to participate, but those that do will 
receive an enhanced match--75 percent federal dollars and 25 percent 
state dollars.
    NBCC is heartened by the incredible support for this legislation 
from you, Mr. Chairman, and from the Committee. All but three 
Subcommittee members have signed on as cosponsors, and three quarters 
of the Full Commerce Committee has cosponsored H.R. 1070. We are 
pleased that in a bipartisan way--this Committee has come together in 
recognition that breast and cervical cancer screening alone does not 
prevent cancer deaths; it must be coupled with treatment if we are to 
achieve a reduction in mortality.
    We now ask the Committee to ensure that happens as the screening 
program grows by enacting H.R. 1070, the Breast and Cervical Cancer 
Treatment Act this Congress.
    Mr. Chairman, and members of the Committee, thank you again for the 
opportunity to testify. We look forward to working with you on this 
critically important issue. I'd be happy to answer any questions you 
may have.
    Mr. Bilirakis. Thank you very much.
    Ms. Braun. Please pull the mike closer if you would.

                    STATEMENT OF SUSAN BRAUN

    Ms. Braun. Good morning, Mr. Chairman--it is afternoon 
now--and members of the subcommittee. It is an honor to be here 
today and to speak before you.
    Before beginning, though, I would like very much to 
recognize and honor the work of Congressman Lazio and 
Congresswoman Eshoo for the work that they have done, not only 
on this bill but also in the interests of breast cancer, which 
has been very significant and long-term.
    I represent the Susan G. Komen Breast Cancer Foundation, 
which is dedicated to eradicating breast cancer. What I want to 
do is share with you the perspective as a funding organization 
and as a community outreach champion, because that is indeed 
what we are.
    According to the Institute of Medicine, we are the largest 
private funder of breast cancer research; and we have raised 
and spent more than $200 million on breast cancer research, 
education, screening and treatment. In fact, we have paid for a 
number of the programs in the community that Fran discussed as 
well as the CDC's efforts and other screening efforts in many 
communities.
    I don't tell you that to pat ourselves on the back, but to 
let you know that we think that the public has entrusted us 
with a great deal of their commitment to breast cancer, because 
we delve deeply into issues and because we do look 
substantively at any issue before we ourselves will fund it. 
And indeed, that is why almost 2 years ago we undertook to look 
at this very critical and important issue of treatment for 
women who are being screened and who do fall between the cracks 
of public and private insurance and who are not insured.
    I agree wholeheartedly with the sponsors of this bill, and 
all of you supporters, as well as with Ms. Visco, that this is 
indeed a serious problem and one that we do want to see 
resolved. And we know that the last decade has been, as we have 
talked about here this morning, witness to a significant 
increase in the utilization of early detection services for 
breast and cervical cancer; and now we genuinely are challenged 
to ensure that the necessary diagnostic as well as treatment 
services are there for women who are indeed found to have these 
cancers and, hopefully, all others.
    We conducted a study, and it is a general estimate of what 
the magnitude of the problem is, because that is something 
again to fund these issues at the local level. We are in 106 
communities. We fund these things. So we need to know we are 
funding the right thing. Is this the best place to use our 
money? We estimated that approximately a thousand women 
screened through the program each year may require treatment 
assistance.
    These are not only those within the 5 to 8 percent that Ms. 
Lee talked about from their study. Indeed, it may be a higher 
number; and we also estimate that there are a number of people 
within those numbers treated who also have to pay for a 
significant amount out of pocket. And so we like to calculate 
those in, too.
    I think what concerned us as much as that in these 
estimates we also recognized that there are an estimated 20,000 
women who are eligible for the BCCEDP program who are likely to 
develop breast cancer but who are not presently being screened. 
These may be women who aren't in touch at all with the health 
care system; and we feel that they, too, need to be brought 
into the health care system. And I know several of you have 
raised important questions about how to do that already today, 
so I don't think I need to go on with that.
    I also would like to submit for the record, if I may, and 
you may already have copies, the testimony that was sent to us 
by the Bridge Breast Cancer Center which is in Dallas, Texas. 
It is a center that has served 1,700 women by linking 
physicians and facilities that provide diagnostic and treatment 
and recovery care for women with breast cancer. In 1998, they 
received a little over a million dollar in pro bono care from 
the professionals who serve the women. So there are programs 
out there.
    [The information follows:]
             Prepared Statement of The Bridge Breast Center
    We appreciate the opportunity to comment on legislation proposed in 
H.R. 1070 to provide assistance in the treatment of women diagnosed 
with breast cancer through a BCCEDP screening program.
    The Bridge Breast Center is a non-profit organization founded in 
1992 for the purpose of linking low income, uninsured women with 
diagnostic and treatment offices for breast cancer. Since its founding, 
the Bridge has served over 1750 women. We enjoy the support of twenty-
two hospitals and clinics throughout our community and the ``pro bono'' 
services of 80 private physicians in the care of our clients. In 1998 
we have received over $820,000.00 in donations and ``pro bono'' 
services totaling over $1,200,000.00.
    It is our belief and a basic tenet of our program that the timely 
diagnosis and treatment of breast cancer requires the coordinated and 
cooperative effort of both the public and private sectors of the health 
community, and our success in North Texas substantiates both the wisdom 
and feasibility of this approach. Our ultimate success, however, is 
primarily limited by our lack of funds and other resources necessary to 
promote and conduct mammographic screening in the undeserved and 
uninsured women of our community. This, in turn means that our patients 
often present in advanced stages of the disease, greater resources are 
consumed in their treatment and outcomes are generally poorer than in 
those women disposed in a screening program.
    It is this vital importance of screening mammography that prompts a 
particular concern in the proposed legislation. Any program design that 
might unintentionally dived funds and other resources for screening 
mammography to the treatment of patents may well produce a net negative 
effect. While we must provide for prompt and vigorous treatment of any 
women diagnosed with breast cancer and certainly welcome any and all 
funds to assist us, we must not do so at the expense of screening 
programs.
    As importantly, care must be exercised to insure there are no 
disincentives that would curtail the willing and vigorous support of 
the private sector and local public agencies in the care of those 
women. Rather, we would encourage a program with the flexibility to 
enter partnership with community efforts to better address the needs 
unique to the women in every community.
    Finally, if funds are made available for the treatment of Medicaid-
eligible women, it seems antithetic to our mutual goals to limit those 
funds to women diagnosed in a BCCEDP screening program only. To do so 
would be a crippling, if not fatal disincentive to the few community-
funded screening programs now existing. We respectfully urge that all 
eligible women be included, regardless of the manner in which the 
diagnosis is made.
    Again we appreciate this wonderful opportunity to comment on 
legislation proposed in H.R. 1070. Thank you very much.
    Ms. Braun. Nevertheless, I agree with the 
characterizations, and we all do, that it is in many cases 
patchwork. There are some very good programs. Those aren't 
everywhere, and we recognize that. Not every State has had the 
good fortune that California had with the Blue Cross/Blue 
Shield moneys to create the treatment fund that existed in that 
State.
    A couple of findings from the studies that we have 
initiated that we think are important is, as I said to you, 
yes, there are some very good--eight States have treatment 
programs, some States have model legislation, some States do 
actually provide some care through Medicaid, but this needs to 
be supplemented.
    I will wrap up.
    Also, we are concerned with the fact that the BCCEDP 
program reaches only about 15 percent of its targeted audience, 
and that leaves a number of women out there who, whether for 
reasons of fear of not being treated, having treatment 
resources, of not wanting to be detected and know the truth, 
indeed aren't coming in touch with the health care system, 
where they might have at least a better chance for an early 
detection, a full treatment.
    We have a number of different possible models that we 
looked at that might help out with this problem. Those are in 
our written testimony. And one of those is a Medicaid option 
for dealing with the needs of uninsured and low-income women. I 
have heard different things said today and earlier, and so I do 
want to clarify that the Foundation has not taken a position 
against this legislation and does not intend to do so. We were 
asked to come to this hearing today, we didn't ask to do so, 
but rather we feel that it is important that since we have done 
some of this research and are a funder of programs in the 
community, a major funder, that we do feel like it is in the 
best public interest to share what we have learned.
    Mr. Bilirakis. Thank you. Please wrap up, because we have 
got to vote.
    Ms. Braun. Major points: Medicaid participation is optional 
in this bill----
    Mr. Bilirakis. You can always do that during the 
questioning. Forgive me, but--you know.
    Ms. Braun. All right. Then thank you very much for the 
opportunity to speak and ask me these questions later, and I 
will be happy to answer them.
    [The prepared statement of Susan Braun follows:]
   Prepared Statement of Susan Braun, President and Chief Executive 
            Officer, Susan G. Komen Breast Cancer Foundation
    Good morning Chairman Bilirakis and members of the Committee: It is 
an honor to be offered the opportunity to speak before you today about 
the pressing issue of treating uninsured women with breast cancer. My 
name is Susan Braun, and I am president and chief executive officer of 
the Susan G. Komen Breast Cancer Foundation. The Komen Foundation was 
established 17 years ago by Nancy Brinker, in honor of her sister, Suzy 
Komen, who died of breast cancer at the age of 36. Our mission is to 
eradicate breast cancer by advancing research, education, screening, 
and treatment. To date, we have raised and spent more than $200 million 
toward this end. Our network of 106 Affiliates in 43 states and the 
District of Columbia, and the 35,000 volunteers that support them are 
conducting 98 Komen Race for the Cure' events this year. 
Last year, through the Race series and other fund-raising vehicles, we 
raised nearly $80 million.
    It is not to pat ourselves on the back that I share with you these 
figures. Rather, it is to help illustrate to you the reach of the Komen 
Foundation and to demonstrate that ``grass roots'' is a way of being 
for us, not a mere cliche. Further, it is to establish the level of 
trust that we have earned with the public--trust that allows them to 
put a large sum of money in our hands with the assurance that it will 
be spent wisely in pursuit of our mission to eradicate breast cancer. 
We cherish that trust and work tirelessly to remain worthy. Komen 
affiliates work at the local level to build the public awareness of 
breast cancer and to establish the best settings possible for education 
and early detection. At a national level, we continue to establish 
programs to support our affiliates in these endeavors. In addition, we 
are (according to the Institute of Medicine) the largest private funder 
of research dedicated exclusively to breast cancer. Last year we funded 
79 basic, clinical, and translational research grants, with grantees 
selected through a novel and well-respected blinded peer-review 
program. In addition we funded population-specific studies and post-
doctoral fellows from our national grants fund for a total of over $17 
million. Our affiliates granted another $25 million to local programs.
    Again, I describe this program not as a means of touting the 
successes of the Komen Foundation. Rather, I wish to underscore also 
that we are quite experienced as funders of novel and strong programs. 
We investigate our areas of spending in significant depth, ensuring 
that we are serving the public trust that has been placed in us. It is 
with this backdrop that we began to study the issue of treatment for 
underserved women over a year ago.
Statement of the Problem:
    An estimated 175,000 new cases of breast cancer will be diagnosed 
in 1999 and 43,300 women will die of the disease. Despite promising new 
prevention treatments, finding and treating cancers in their earliest 
stage remains our most effective way of reducing the morbidity and 
mortality associated with this disease.
    The good news is that an increasing number of women are receiving 
mammograms. In 1995, over 80 percent of women 40 years of age and over 
reported ever having had a mammogram and about 60 percent reported 
having had a mammogram and clinical breast exam within the past 2 
years. The National Breast and Cervical Cancer Early Detection Program 
(NBCCEDP), operated by the Centers for Disease Control and Prevention 
(CDC), has played a critical role in this achievement, ensuring that 
low income, underinsured and uninsured women are not left out of the 
success story. The NBCCEDP has provided almost three-quarters of a 
million mammograms to low-income, underinsured and uninsured women.
    However, while the past decade has been witness to significant 
increases in the utilization of early detection services for breast and 
cervical cancer, we are now challenged to ensure access to necessary 
diagnostic and treatment services for women whose mammogram or Pap test 
yields suspicious findings.
    In working to assess how to best go about ensuring accurate 
diagnosis and appropriate treatment of breast cancer, we have 
established the following basic premises:

 Women diagnosed with breast cancer must be treated if they so 
        choose, irrespective of their ability to pay.
 The quality of treatment they receive should be the highest 
        possible.
 The time between diagnosis and initiation of treatment must be 
        as short as possible.
 Care should be coordinated, ensuring the best care by the 
        correct specialist.
 Care must not be short-term only; follow-up for at least five 
        years is required.
    Upon establishing these central tenets, we then explored the 
critical questions that needed to be answered in order to provide 
timely, coordinated, comprehensive, and high-quality treatment to 
uninsured women. This led to four key questions:
Question One: What is the magnitude of need?
    Our very general estimates indicated that the potential magnitude 
of need is significant. As you can see in the chart attached to the 
following page, there are an estimated 1,000 women screened through the 
BCCEDP program each year who may require treatment assistance. In 
addition, there are an estimated 20,000 women who are eligible for 
BCCEDP but are not presently being screened, who are likely to develop 
breast cancer, and have no access to this program and what it offers in 
terms of diagnostic services and case management for further care.
[GRAPHIC] [TIFF OMITTED] T8502.001

Question Two: In which populations does the need for treatment 
        assistance lie?
    The need for treatment assistance for women diagnosed with breast 
cancer lies primarily among the uninsured, medically needy, and/or 
underserved. In addition, insured women who have lost their coverage or 
have reached a lifetime maximum, particularly those being treated for a 
recurrence of their breast cancer, can be in need. Women with 
healthcare coverage but with a policy that excludes some forms of 
treatment may also be at need.
Question Three: What can be done to meet the needs for treatment for 
        those screened and diagnosed through the BCCCEDP and those not 
        reached at all through the program?
    Reaching women who have been screened and diagnosed through the 
BCCEDP with treatment assistance is more straightforward than reaching 
those who are not. Those who have been diagnosed within the program can 
be assisted by case managers, who will help find available services or 
a program that can provide special national, state, or local funds. 
Eight states have legislated breast cancer treatment funds, and local 
programs (such as ``The Bridge'' in Dallas) also exist. Pro-bono care 
is provided in many communities. In the case of failure of these 
funding options, federal assistance may be required.
    To reach those women who are eligible for but unscreened by the 
BCCEDP, more outreach must be undertaken to ensure detection of breast 
cancer as early as possible to improve the likelihood of a favorable 
outcome. At present, due to lack of interaction with the healthcare 
system, these women may not be diagnosed at all, or may appear in 
emergency rooms or public clinics with advanced disease. For this group 
to be assured that early screening and diagnosis will be achieved, CDC 
program funding will require regular increases.
Question 4: What are potential models for meeting the needs of those 
        diagnosed?
    Recognizing the growing need for additional information about the 
provision of breast cancer diagnostic and treatment services among 
women who have no means of support for such services, and in order to 
guide our actions as a funder of treatment assistance programs, the 
Susan G. Komen Breast Cancer Foundation initiated a study. It covered 
current strategies being used by communities across the country to 
address the growing challenge of ensuring diagnostic and treatment 
services. This study, which I am now introducing into the record, 
revealed:

 Women are receiving treatment. Both the CDC and the Komen 
        Foundation studies found that treatment was initiated for the 
        vast majority of women who received a diagnosis of breast 
        cancer. While imperfect and needing further resources, the 
        system has been providing treatment for most women who need and 
        want it.
 Patient navigator and case management services are critical in 
        ensuring follow-up diagnostic and treatment services for women 
        with suspicious screening findings. Case managers determine 
        patient eligibility for assistance programs, including Medicaid 
        and Medicare, identify and negotiate alternative sources of 
        donated care, identify and coordinate provision of support 
        service needs, such as transportation and child care, and 
        assist women in understanding and navigating an increasingly 
        complex health care system. Such services are critical even in 
        areas that have treatment funds and will continue to be 
        necessary if states have an option to provide for treatment 
        services under Medicaid.
 Provision of services reflects a delicate web of relationships 
        and linkages across public and private organizations and across 
        the federal, state, and local levels. Local communities are 
        meeting the challenge of ensuring treatment services through 
        the dedication of local health care and community professionals 
        who donate services.
 The need for early detection services exceeds current levels 
        of support. While the NBCCEDP has reached more than 1.3 million 
        women with screening services, this represents only 12-15 
        percent of the women eligible for services in each state. 
        Currently, state awards under the NBCCEDP range from $1.0 
        million to $5.0 million annually based on state population, the 
        number of uninsured and underinsured low-income women, state 
        capacity, and other factors. The need for early detection 
        services outweighs current levels of support. Some partnerships 
        between public and private organizations have been established 
        to address the need for educational outreach and screening. 
        Examples include the ENCOREplus program in St. Joseph, 
        Missouri, which addresses barriers women face to health 
        education and access to education and detection services and 
        the Montana Department of Public Health and Human Services 
        screening program.
 Innovative partnerships are being formed to address local 
        treatment needs. Our study identified ten treatment funds 
        established specifically to meet the needs of low-income 
        uninsured and underinsured women. These included three 
        privately funded (California Treatment Fund, Orange County 
        Susan G. Komen Breast Cancer Foundation, and South Dakota 
        Women's Cancer Network) and seven state-funded programs 
        (Arkansas, Georgia, Rhode Island, Maryland, North Carolina, 
        South Carolina, West Virginia). These initiatives varied 
        considerably in sources of support, structure, services 
        covered, size and other important factors. They combined the 
        unique local strengths of public and private sector partners 
        and all were tailored to local circumstances. These local 
        solutions generally are the result of partnerships between the 
        government and private sector.
Actions for Success
    Efforts to meet the challenge of ensuring early detection and 
treatment for breast and cervical cancer over the past decade have 
yielded both successes and lessons. Many women are being diagnosed and 
treated, case management is critical to ensuring this treatment, the 
current local infrastructure for ensuring treatment reflects a delicate 
web of services and relationships, current funding is insufficient to 
fully address the magnitude of need, and innovative public/private 
partnerships hold the promise of meeting these challenges for the long-
term future.
    Potential models for meeting the needs of those being diagnosed 
include:

 Community treatment models: Expand case management and public/
        private funds to strengthen and expand existing models.
 State treatment plans, which currently exist in some states: 
        Model state legislation for treatment programs with federal 
        demonstration project monies.
 Establish a Ryan White type program, which is used for HIV 
        treatment.
 Use or enhance existing provisions with respect to state 
        medical necessity provisions under Medicaid.
 Establish a Medicare adjunct program with a separate funding 
        base.
 Other comprehensive programs.
    We realize that the purpose of today's hearing is to discuss H.R. 
1070, a bill to amend Title XIX of the Social Security Act to provide 
medical assistance for women screened and found to have breast or 
cervical cancer under the BCCEDP program. We highly credit Congressman 
Lazio and Congresswoman Eshoo for championing this plan and being true 
allies in the fight against breast cancer.
    As stated previously, Medicaid assistance is one of several options 
for dealing with the needs of uninsured, low income women who are 
treated for breast cancer. Contrary to some accounts we have heard, the 
Komen Foundation is not opposed to this legislation. We are concerned, 
however, that any treatment initiative provides a comprehensive and 
effective solution and reaches those most in need of assistance. 
Therefore, if serious consideration is to be given to this alternative, 
as opposed to others, we urge consideration of the following points:

 Medicaid participation is optional in the proposed bill. 
        States with limited funds in their Medicaid program may be 
        reluctant to cover care for people who would otherwise be 
        ineligible.
 Medicaid programs may be adverse to participate in an optional 
        program that is diagnosis-specific (that is, only targeted for 
        one disease). Although the mission of the Komen Foundation is 
        focused only on breast cancer, we are aware of the needs of 
        many people with other diseases who are covered by Medicaid.
 Medicaid varies considerably from state to state. Some states 
        can afford more care than others can. An optional program that 
        requires an initial investment on the part of states may be 
        ``picked up'' only by the wealthier states. This may contribute 
        to the variation in how a woman may be treated in one state 
        compared to another.
 Eligibility for a Medicaid program may require women to spend 
        down their resources before they qualify, and it is important 
        that the financial status of patients undergoing treatment not 
        be jeopardized.
 Medicaid eligibility only for women who are screened through 
        the BCCEDP program does not account for the 85% of women who 
        are eligible for the program but not reached. A certain 
        percentage of these women, who may not be in touch with any 
        healthcare services at all, will nonetheless develop breast 
        cancer.
 Follow-up for breast cancer is standardly provided for at 
        least five years following treatment. Any program that is 
        medically sound must also provide for follow up.
    It is critical that any proposed treatment strategy address the 
full audience and the long-term issues associated with breast cancer 
treatment. Treatment of breast cancer is required by all who have the 
disease and wish to be treated, irrespective of where they were 
screened or where their disease was diagnosed. Women treated must be 
followed up to ensure the best possible outcomes. This issue is of 
grave concern to all involved with breast cancer. We must ensure a 
comprehensive solution, lest we walk away prematurely, with the notion 
that we have ``solved the problem.'' We are indeed running quickly up 
this very important ladder; let us be certain that we have it propped 
against the appropriate building.
    Thank you very much for your time and attention.

    Mr. Bilirakis. We will break until 1 o'clock.
    Ms. Tapp and Dr. Klausner, forgive us. I appreciate the 
patience of everybody, but this is our world up here. Thank 
you.
    [Brief recess.]
    Mr. Bilirakis. Well, Ms. Capps is here. Ms. Eshoo is here. 
So we will get started. Mr. Brown I know is on his way.
    Ms. Tapp, why don't we go ahead and start with you? Please 
pull the mike closer.

                    STATEMENT OF CAROLYN TAPP

    Ms. Tapp. Good afternoon everyone. I am Carolyn Tapp, and I 
am President of the Women of Color Breast Cancer Survivor 
Support Project in Los Angeles. I appreciate the opportunity of 
being able to speak on behalf of women of color and the 
underserved women in the Los Angeles area.
    Many of the women who are in our group were screened 
through the CDC program, and they must have been the ones that 
fell through the cracks, because it wasn't as easy as I have 
heard, you know, to get treatment. Some of the women I know 
took about 6 months to actually get treatment. And I think this 
is just unheard of.
    I know of one lady who was diagnosed, and the day she was 
treated she found out that she qualified for the program, she 
passed away the very next day. So it really didn't do her any 
good to go through this screening and all that. And a lot of 
women do voice the fact that why should they be screened when 
they don't get treatment? And most times when they get 
treatment it is inadequate treatment.
    We are women who want to live just like everyone else in 
this country. This is a rich country, and we should be able to 
live and to go through the storm of breast cancer. I have known 
women who have had to borrow medication from other women in the 
group, because they couldn't afford to buy the medication. I 
know that I loaned many women some of my medication Tamoxifen 
especially, because they were left out to get this kind of 
medication, and it costs hundreds of dollars. So they couldn't 
afford to buy it. So we share.
    And we share a lot of things together in the group. Our 
group--we have about 125 women in the group; and, last year, we 
lost 13 women to breast cancer. And this year we have lost 
four, including our vice president of the organization, Mary 
Lee Matthews.
    The majority of the women last year were screened through 
the program or they had found some other kind of treatment, and 
this leaves our women vulnerable to groups of people who come 
out and say I have a treatment or I have a cure, and we can 
take care of you, and they are so open and so--knowing that 
they don't have money to be treated through the system, they go 
out and they get these different things--well, one thing is a 
kind of water they drink or some kind of root. And this is what 
is happening in our country.
    And a lot of times they are never offered reconstruction. I 
have had women come in and tell me that they are using balloons 
with water to use as a prothesis. And this should not happen in 
our country.
    And like the lady this morning said, we have a $12 million 
grant of moneys, that money ran out. She should have said we 
had and we have. We had it. We don't have it any more. So I 
don't know where to turn now when a woman comes in and tells me 
that she has been diagnosed or she is diagnosed through this 
program. I don't know where or how to turn or where to tell her 
to go, because this program is running out.
    We must have adequate care for every woman in this country, 
no matter what her race is, what her financial standings are. 
We just must eradicate breast cancer, and we must have some 
type of treatment, whether she is capable of paying or not, she 
shouldn't be turned down.
    Because most women in my community are heads of households. 
They don't have money. They have to make decisions. Should I go 
and get a treatment or should I stay at home? And this is 
because they know that nothing is out there, nothing is out 
there. So we must have a bill to take care of all of our women. 
All of our women in this country deserve--I know I deserve and 
I know all of my women deserve adequate treatment.
    Thank you.
    [The prepared statement of Carolyn Tapp follows:]
 Prepared Statement of Carolyn Tapp, President, Women of Color Breast 
                    Cancer Survivors Support Project
    My name is Carolyn Tapp, President of the Women of Color Breast 
Cancer Survivors Support Project, located in Los Angeles, California. 
The Women of Color Project was established in 1991 to link African 
American survivors to one another and to resources and services. Our 
mission is to help our sisters survive through the storm of breast 
cancer. To date WOC has provided support to over 200 breast cancer 
survivors as well as over 2,500 African American women at risk through 
our ``Each One Teach One'' Breast Health Education Seminars.
    I appreciate the opportunity to testify before you today and to 
speak on behalf of the brave women I work with everyday who fight 
breast cancer against tremendous odds. Being diagnosed with breast 
cancer is devastating. For women who are poor, African American, and 
have no health insurance to pay for their treatment--it often feels 
hopeless.
    Many women in my program were diagnosed with breast cancer through 
the federal screening program. This program gives women the promise of 
early detection of breast cancer--when there is the best chance of 
survival--even when they don't have private health insurance. Once 
diagnosed, however, these women face serious problems finding treatment 
services. That is where we come in--to help connect them with those 
services and to provide support.
    For these breast cancer patients there really is no system of 
care--and the care they do receive is partial and very often 
inadequate. Treatment services are difficult to find; increasingly 
physicians have not been willing to provide their services for free or 
for little charge. The women we see often have to wait for care; or 
wait to see if they qualify for Medical (the Medicaid system in 
California). Most often they end up at public health facilities or end 
up with medical bills in the thousands of dollars that they will never 
be able to pay. A dear woman in our program just passed on after 
waiting for six to seven months to qualify for Medical so she could get 
treated. The Medical eligibility came one day before she died from 
breast cancer.
    We find that the women we serve often make medical decisions about 
the type of treatment they get based on whether they will have to pay 
for the care. For the last few years, California had a fund of private 
dollars donated by the California Wellness Foundation to treat women 
with breast cancer. The funding for that program no longer exists--but 
when it was available--it only covered one year of treatment. Because 
of the limited funding, women chose to have radical mastectomies even 
when breast conserving treatment was recommended. The women were afraid 
that when the funding ran out they wouldn't be able to pay for 
chemotherapy and radiation. They were fearful that there would be no 
treatment available to them if their cancer recurred.
    This just isn't right. Women should be able to make decisions about 
their treatment based on good medical recommendation--not based on fear 
because they can't afford treatment like chemotherapy and radiation.
    I would also like to tell you about the many women who do get 
treated--some at public facilities--that receive horrible inadequate 
care. Some women we see are talked into radical mastectomies because 
the physicians know they don't have insurance and can't pay. No women 
get reconstructive surgery and have to live, not only with horrible 
scars, but also terrible side effects from bad care. There doesn't 
appear to be any accountability among some of the doctors who end up 
treating poor African American women.
    The women we see find themselves at the mercy of a system that 
doesn't really serve them. It is full of cracks and holes and the women 
we see every day slip through them. Last year 13 women in our group 
died; this year so far, 4 more women have died. Many more suffer from 
inadequate care. We do our best to help them and to reach out to the 
community to find better services. But we see far too much suffering.
    But having a law that ensured that each woman received good care, 
for all the services that are medically necessary for treating breast 
cancer is what is necessary to close the gap between screening services 
and medical treatment. The women at our project deserve the same chance 
of survival, with the same quality of life as all women who find they 
have breast cancer. That is the promise of the screening program that 
sought to reach out to underserved communities like mine. Its time 
Congress made good on that promise by passing this treatment bill.
    Thank you.

    Mr. Bilirakis. Thank you very much, Miss Tapp.
    The Chair recognizes Mr. Lazio for purposes of introducing 
Dr. Klausner.
    Mr. Lazio. Thank you. It is with a great deal of pleasure 
and gratitude that I have the opportunity to introduce Dr. 
Klausner and also his wife who have traveled from Long Island 
to be here. She is a nurse in her own role.
    I want to just mention that Dr. Klausner has really done a 
great public service, and he is a volunteer. He is in the 
trenches. He is a well-educated physician, and he got his 
medical degree through NYU. He is board certified, specializes 
in disease and surgery of the breast and currently is the 
attending surgeon and director of breast services at the 
Brookhaven Memorial Hospital, which is back on Long Island.
    He is here today really to talk about his experience in 
treating women who suffer with breast cancer and particularly 
through the early detection program. In addition, as I said, to 
his long-standing practice, which is a successful practice, he 
has been a volunteer in helping poor and nonworking woman his 
entire career. For the last several years, he has worked with 
Suffolk County, my home county, and with low-income, uninsured 
woman who have been helped through the Federal screening 
program.
    He is the founder and administers two breast cancer clinics 
located at community health centers in Amityville and 
Patchogue, which are low-income communities on Long Island. And 
he follows uninsured women through the process from screening 
to treatment and beyond, and he talks to them about their fear 
of having the disease, the anxiety about where to find 
treatment and where and how the bills will be paid, not to 
mention the emotional toll that these women face.
    And I am again very grateful for the fact that the chairman 
has seen fit to invite Dr. Klausner, and Dr. Klausner has come. 
I am looking forward to his unique perspective.
    Mr. Bilirakis. Thank you, sir.
    Mr. Bilirakis. Doctor, you are on next.

                  STATEMENT OF STANLEY KLAUSNER

    Mr. Klausner. Thank you.
    I recently learned about H.R. 1070, and I felt compelled to 
speak to you in support of its enactment. I am not here 
representing any political or special interest group. I speak 
to you as a hands-on community surgeon and tell you of my 
experiences treating the population addressed by the bill that 
you are proposing, we call that the working poor.
    In 1995, I became aware of the growing need to treat the 
working poor in my community who were unable to obtain 
comprehensive breast care at a local level. When diagnosis of 
breast cancer was made, particularly, and thankfully through 
the CDC program, these patients were referred to tertiary care 
facilities where they would have to literally work their way 
through the system.
    Unfortunately, the care of breast cancer patients is 
multifaceted; and these patients were receiving inconsistent 
levels of care. At the time, I was asked by the administration 
of South Brookhaven Health Center to create a total care breast 
center which would take care of patients from start to finish. 
My task, besides developing the mechanics of a breast program, 
was to enlist a panel of--we will call them volunteer 
specialists who were willing to treat these patients, often for 
free.
    There were numerous problems that occurred. The primary 
ones that we ran into were that physician services can be free, 
but durable medical equipment and supplies and drugs are not. 
This problem still exists. We were able to prevail, and this is 
a successful program currently, as Congressman Lazio mentioned 
to you. And at the end of my written statement, there is an 
exhibit labeled Exhibit A, which lists our statistics in 
treating the patients in our area who are the working poor.
    Of note in that exhibit is the fact that 59 percent of our 
patients are uninsured. In 1995, when we started the program, 
there were 33 percent that were uninsured.
    Now, I previously alluded to the fact that breast cancer is 
multifaceted and people have been talking about all the things 
that go into taking care of a patient with breast cancer. Once 
a diagnosis of breast cancer is made, it requires, and I wrote 
it out for you in more detail, a breast cancer surgeon, a 
medical oncologist, a radiation oncologist, a plastic surgeon, 
which is rare as hen's teeth, prosthetics, not balloons filled 
with water, psychological counseling, and multiple support 
groups.
    This is in addition to the typical stuff that everybody 
knows--pathology, laboratory, inhospital services and, 
remarkably, pain medications, which are not covered for these 
patients. All of these modalities must be in place in order for 
us to provide what the medical community has termed standard of 
care.
    Having only a part of the services funded while somehow 
believing the patient can pay for the others to me is 
unrealistic.
    A few things I would like to tell you, a disturbing trend 
has been emerging, and it has been touched upon here, with the 
advent and penetration of managed care, physicians are faced 
with new challenges. They have to see higher volume in order to 
maintain an acceptable bottom line, a fact of life. The free 
services they render to the working poor are straining their 
ability to adapt and making the breast program much more 
difficult to implement. I fear that, in the future, the 
altruistic feelings of my fellow physicians may be supplanted 
by the adage ``charity begins at home.''
    Even more disturbing, which was not touched upon, is I 
think, from my experience, the working poor are afraid to elect 
breast-conserving surgery. They are terrified of the medical 
bills, and their medical judgment becomes biased.
    Take, for example, a working mother supporting two children 
and not qualified for Medicaid. Even if her breast cancer is 
amenable to breast-conserving surgery, she knows that if she 
goes that route she--may I have another minute? She knows she 
has to go for chemotherapy, radiotherapy and the rest, and 
those bills become too expensive. What a difficult decision a 
woman must make when she opts to sacrifice her breasts rather 
than incur additional medical bills.
    As for plastic surgical reconstruction, I have never yet 
been able to have that done on any patient I have treated.
    I can continue giving you my personal experiences in 
treating the working poor and tell you of their courage and 
dignity. Unfortunately, it would take more than my allotted 
time, which I have already done.
    Most simply put, these patients have been thrust into the 
health care arena through no fault of their own. They know they 
can't pay for expensive treatments, yet they must work the 
system in order to survive.
    Every one of us has a cause we support. We love to rally to 
right the wrongs. My cause is simply to be able to treat breast 
cancer in all of my patients. My being here today is to urge 
you, the Congress of the United States, to provide some 
economic support to ease the hard choices the working poor must 
make and to help the system accommodate their care.
    I firmly believe enacting H.R. 1070 gives the Congress an 
opportunity to improve the outcomes of the working poor 
afflicted with breast cancer. You wisely legislated funds for 
diagnosis. Now I urge you to complete the job by funding 
treatment as well. Thank you.
    [The prepared statement of Stanley Klausner follows:]
                 Prepared Statement of Stanley Klausner
    My name is Dr. Stanley Klausner and I am a board certified General 
Surgeon specializing in the treatment of diseases of the breast. I live 
and practice on Long Island where breast cancer is extremely prevalent. 
During my 25 years in practice, I became focused on treatment of breast 
cancer, a disease which attacks one in eight women. I am currently the 
Director of Breast Services at Brookhaven Memorial Hospital in 
Patchogue New York, a medium sized community hospital located on 
Suffolk County's south shore. I maintain a busy private practice 
devoted almost exclusively to breast disease and run a weekly breast 
clinic at two Health Centers in Suffolk County.
    I recently learned of Congressman Lazio's bill H.R. 1070 to amend 
Title XIX of the Social Security Act to provide medical assistance for 
certain women screened and found to have breast or cervical cancer 
under a federally funded screening program. I am compelled to speak to 
you in support of its enactment. I am not here representing any 
political or special interest group. Rather, I speak to you as a 
``hands on'' community doctor and want to tell you my experiences in 
treating the population addressed by this bill, a population called the 
``working poor''.
    In 1995 I became aware of a growing need to treat the working poor 
in my community who were unable to obtain comprehensive breast care at 
a local level. These patients were being seen by primary care 
physicians in the private sector and at the County Health Centers. When 
a diagnosis of breast cancer was made (often through the National 
Breast and Cervical Cancer Early Detection Program or NBCCEDP) they 
were being referred to a tertiary care facility such as Stony Brook 
University Hospital. There they worked their way through the system 
trying to obtain treatment. Unfortunately, the care of breast cancer 
patients is multifaceted and many patients often obtained inconsistent 
levels of care. At that time, I was asked by the administrator of the 
South Brookhaven Health Center in Patchogue to set up a program for the 
total care of patients with breast disease. He would in turn attempt to 
fund the program through the County. My task, besides developing the 
mechanics of a breast clinic, was to assemble a group of volunteer 
specialists willing to treat these patients, often for free. Problems 
abounded especially when physician's services required durable medical 
supplies or drugs. This problem still exists. We were able to prevail 
and the program is quite successful. I have attached an abstract of the 
1998 statistics from the Health Center for your consideration labeled 
Exhibit A. It provides you with percentages of breast cancer in our 
sampling population. It also lists the patient's financial class. You 
will note in the exhibit, 59% of our patients were uninsured. When I 
started the program in 1995 that percentage was 33%.
    I previously alluded to the treatment of breast cancer as 
multifaceted. It is important for you to understand the many services 
needed to treat this disease and the costs they represent to the 
working poor. Once a diagnosis of breast cancer is made, the following 
services may be required (depending on the type and severity of the 
tumor):

 Breast Surgeon to perform either a mastectomy or a breast 
        sparing surgical procedure such as a lumpectomy and axillary 
        lymph node dissection.
 Medical oncologist to provide chemotherary and hormonal 
        therapy.
 Radiation oncologist to provide radiotherapy.
 Plastic surgeon to provide reconstruction to the mastectomy 
        site.
 Prosthetics for the patient to use if reconstruction is not 
        done.
 Psychological counseling.
 Various support groups.
These services are in addition to the more mundane ones such as 
pathology, laboratory, in-hospital services and even pain medications. 
All of these modalities must be in place in order to provide ``standard 
of care'' for the breast cancer patient. Having only a part of these 
services funded, while somehow believing the patient can pay for the 
others, is unrealistic.
    Over the years that my breast program has been in effect, a 
disturbing trend has been emerging. With the advent and penetration of 
managed care, physicians are faced with new challenges. They must see 
higher volume in order to maintain an acceptable bottom line. The 
``free services'' they render to the working poor are straining their 
ability to adapt and is making the breast program more difficult to 
implement. I fear that in the near future the altruistic feelings of my 
fellow physicians may be supplanted by the adage ``charity begins at 
home.''
    Even more disturbing is my gradual awareness that the working poor 
are afraid to elect breast conserving surgery. They are so terrified of 
medical bills that their medical judgement is biased. Take for example 
a working mother supporting two children and not qualified for 
medicaid. Even if her breast cancer is amenable to breast conserving 
surgery, she often elects a mastectomy because she knows the cost of 
the additional treatments needed in breast conservation, such as 
radiation and chemotherapy, are too expensive. What a difficult 
decision this woman must make when she opts to sacrifice her breast 
rather than incur medical bills she can't pay. As for plastic surgical 
reconstruction of her mastectomy site, this has simply never been an 
option.
    I can continue giving you my personal experiences in treating the 
working poor and tell you of the courage and dignity most all have 
shown. Unfortunately it would take considerably more than my allotted 
time. Most simply put, these patients have been thrust into the 
healthcare arena through no fault of their own. They know they can't 
pay for expensive treatments yet they must ``work the system'' in order 
to survive. Every one of us has a cause we support. We all love to 
rally for a wrong that needs to be made right. Mine is to continue to 
be able to treat this disease in all of my patients. My being here 
today is to urge you, the Congress of the United States, to provide 
some economic support to ease the hard choices the working poor must 
make and to help the system accommodate their care. I firmly believe 
enacting H.R.1070 gives the Congress an opportunity to improve the 
outcomes of the working poor afflicted with breast cancer. You wisely 
legislated funds for diagnosis, now I urge you to complete the job by 
funding treatment as well.
    I thank you for your attention.

                                Exhibit A
 The following is the statistical summary for the Breast Disease Program
                                in 1998:
------------------------------------------------------------------------

------------------------------------------------------------------------
Patient visits:............................................       534
Diagnostic procedures......................................       113
Surgery
  mastectomy/resection.....................................        21
  Other cancer treatment...................................         6
Financial Class
  Self Pay.................................................        59%
  Medicaid.................................................        29%
  Medicare.................................................         9%
  Private Insurance........................................         3
------------------------------------------------------------------------


    Mr. Bilirakis. Thank you very much, Dr. Klausner. There are 
an awful lot and yet too few people like you in our society. 
There are a lot of volunteers in this country, a lot of pro 
bono work, and we are very grateful for that and for you.
    Dr. Klauser, how would an optional Medicaid expansion, 
things that this bill would do, affect your pro bono work?
    Mr. Klausner. I think that touches on the heart of the 
difficulty. Remember, it is not a problem or has not been a 
problem for my colleagues who have supported me in this program 
to lend their time and efforts. When you ask an oncologist to 
treat a patient who desperately needs chemotherapy, who pays 
the thousands of dollars for the medications? This plan would 
pay for that. That is covered, and medications are covered 
service.
    If a woman needs a breast prothesis if she has had a 
mastectomy, who covers that prothesis? Those are the kinds of 
the durable medical equipment and the medications alone are a 
good enough reason to move this forward. It gives the 
physicians the opportunity to be benevolent.
    It is very hard to ask somebody, a plastic surgeon, to put 
in a prothesis and the prothesis costs $3,000. He is not going 
to pay for that, particularly if you line up 15 women. So I 
think that, just on the equipment, on the medications that are 
required, the bill would be beneficial. If, in fact, there was 
some remuneration for all of the pro bono work, it would make 
it more enthusiastic. Medicaid rates are not the standard of 
care--standard of payment in the communities, you have to know 
that.
    Mr. Bilirakis. No, that is for sure.
    Mr. Klausner. However, physicians are willing to do that to 
take care of these patients. And that was my goal, to keep the 
patients from scattering around and seeking opportunities all 
around. When they live in a community that has good physicians, 
a good hospital, why can't they use it? So I honestly believe 
that would make a great step forward.
    Mr. Bilirakis. Great. Well, you know, you bring up a point, 
and I am an early cosponsor of the legislation, and I do feel 
that something like this is needed. You heard during the prior 
testimony and the questioning, that we have only been able to 
reach approximately 15 percent of the eligible population as 
far as screening is concerned. So something has to be done, I 
think we would all agree, for improvement there, which would 
take additional funds.
    Do you feel that if something like this program here were 
limited--I hate to use that word--were limited to drugs, 
prosthesis, other medical durable equipment, et cetera, that 
are so very expensive, that there would be enough volunteers 
out there to cover the rest of it, in other words, providers 
like yourself?
    Mr. Klausner. I would like to say yes. Unfortunately, it 
has been covered over and over that the medical community is 
under great stress now to reorganize and readjust the way it 
practices.
    Mr. Bilirakis. Sure. My son is a physician, I know what you 
mean.
    Mr. Klausner. So is mine. He doesn't know what he is 
getting into. But the----
    Mr. Bilirakis. He is learning.
    Mr. Klausner. Yes. The issue really is the fact that it is 
very difficult to do charity work, pro bono work, work at 
markedly reduced rates, when you have to pay your staff, your 
rent and so on.
    I think that making an effort, even if it is at the 
Medicaid level, the government is making that effort. It is 
putting the signal out to the physicians, if the government is 
moving funds in that direction, we have to meet them halfway, 
as was presented by the CDC. I mean, some of the suggestions 
that were recommended, find out payment plans. I mean payment 
plans, things like that, I think there has to be something to 
support our efforts.
    Mr. Bilirakis. Thanks.
    Let me ask you, Ms. Visco. Have you had any indication from 
the administration as to how they would address this problem?
    Ms. Visco. The only information I have from the 
administration is what the CDC testified to this morning. And I 
didn't hear anything from the CDC that they would address this 
problem--that they are able to address this problem in any 
other way without legislation.
    Mr. Bilirakis. Without this type of legislation?
    Ms. Visco. Yes.
    Mr. Bilirakis. I understand at least at this point they 
refuse to endorse the bill. Do you have any comments regarding 
that?
    Ms. Visco. If the administration refuses to endorse the 
bill, the National Breast Cancer Coalition will take it to 
task; and they will hear from the members of the National 
Breast Cancer Coalition. They won't stop hearing till they 
endorse this bill.
    Mr. Bilirakis. You don't know then whether they endorse or 
do not refuse to endorse the bill?
    Ms. Visco. Right. We have had discussions with them, but we 
don't have an answer. Just the way you saw the CDC respond, 
discussions, but we don't have an answer yet.
    Mr. Bilirakis. All right, thank you.
    Mr. Brown.
    Mr. Brown. Thank you, Mr. Chairman.
    Dr. Klausner, we have heard over and over today only 15 
percent of women who are eligible have been screened. You have 
said and others have said--and I apologize, Ms. Tapp, for not 
being back for your testimony--that if we were to increase the 
amount of money for screening that it would be very difficult, 
because already there is a squeeze on getting the number of 
physicians to donate services, that it would be very difficult 
to keep up, correct?
    Mr. Klausner. Yes.
    Mr. Brown. What have you found in the past that has been 
the most--for those people that have been screened and those 
who are diagnosed positive, what is the hardest service to 
provide? Is it the physician's time? Is it the chemicals for 
chemo? Is it prosthetic devices? What have you found is the 
most difficult to bring in, in sort of a volunteer basis, a 
donated basis?
    Mr. Klausner. Well, the reality of the situation is that 
medicine today is designed with a quarterback. Somebody has to 
organize and run a program. Somebody has to run the patient's 
care.
    The problem with the working poor is that nobody has 
stepped up to the plate to do that. We do it in our health 
centers. Patients that I see and operate on are followed for 
life in the clinic. And we know that is going to stress the 
number of hours that we can see patients. But that is just the 
way it is.
    Most of the people who volunteer under the CDC program for 
diagnostic work see the patient, do the diagnostic piece and 
the patient is cut loose. They now have to fend for themselves 
to find out where to go or they may make some nice suggestions. 
So I think that physicians have to be stimulated to take care 
of these patients as they do their private insurance-paying 
patients.
    And, second, even if they do that, as I mentioned to you 
before, the costs of the equipment that we use is far and away 
more than what we charge, and those have to be addressed as 
well.
    So I think you have to stimulate the physician to work to 
organize a patient through all of those steps. You can't do 
just a piece of it. If a patient is treated with a mastectomy 
or a lumpectomy and needs radiotherapy and doesn't get that, 
you might as well have done nothing. So all has to be done. It 
is a comprehensive package.
    And I think that breast is one of the few conditions where 
that is truly the case. If there is a colon cancer, you take it 
out, you follow them, maybe with a yearly coloscopy, they are 
done. With breast, it is an ongoing process; and, besides, they 
have another breast.
    So I think that it is not a simple answer, and it requires 
depth. It requires funding and it requires wisdom. And we need 
to do that.
    Mr. Brown. What percentage of doctors, physicians in the 
community do you think do a significant amount of charity care 
today?
    Mr. Klausner. Less and less. I can't tell you what the 
percentages are. We all do it. Everybody does it.
    Mr. Brown. Do you think it is? 1 in 10? 1 in 5? That is a 
significant amount.
    Mr. Klausner. A significant amount?
    Mr. Brown. That is a few hours a week on the average.
    Mr. Klausner. Five percent.
    Mr. Brown. Is that any lower than 20 years ago? We all 
blame managed care on--saying that the managed care, there is 
less charity. Is there really?
    Mr. Klausner. Yes. If I spend 45 minutes with a patient and 
I get paid nothing and you have three of those a day, how do 
you get by when the fees have been reduced? I mean, this is not 
the forum for that, but it is an economic fact. And, therefore, 
I don't blame the colleagues of mine who have become more 
reluctant to do the work they used to do more freely. They 
still do it.
    Mr. Brown. Ms. Visco, do you want to answer that, too?
    Ms. Visco. Yes I wanted to add, there is actually a study 
that has been published in JAMA in the April, 1999, issue that 
points that out that, with managed care and the evolving health 
care system, the percentage of charity care is decreasing and 
decreasing rapidly. And I will make that available to the 
members of the committee.
    Mr. Brown. Ms. Visco, what about the concerns that under 
this legislation that we will be treating women with breast 
cancer differently under Medicaid than other people with other 
diseases?
    Ms. Visco. What we are asking for is a complete public 
health program, so we are not asking you to put every woman who 
doesn't have insurance in Medicaid. What we are asking you to 
do is to enact legislation that completes the existing Federal 
program. There is a screening program for breast and cervical 
cancer.
    Screening alone does nothing. It needs to have a treatment 
component. So we are asking that the women diagnosed through 
that program be made Medicaid eligible at the same rate that 
they have to be eligible to get into the program to begin with. 
So we are not asking them to pay down anything. We are saying 
if they are eligible for screening, they should be eligible 
then for Medicaid treatment. That is why we are asking for 
breast and cervical cancer, because a Federal screening program 
exists.
    Mr. Brown. Okay. Thank you, Mr. Chairman.
    Mr. Bilirakis. Mr. Lazio to inquire.
    Mr. Lazio. Thank you, Mr. Chairman.
    Let me ask Dr. Klausner. You were here for the testimony of 
Dr. Lee, and you heard her testimony with respect to the survey 
results that they have in hand. Now, I wonder if you would be 
willing to comment on what that means to you and how do you 
square that with your experience?
    Mr. Klausner. Well, I read the study, and in all due 
respect, when you want to do a study to find out the effects on 
women receiving proper care, it would seem to me those are the 
people you should be speaking to. In my experience, the 
patients who have come through the breast clinic are way out in 
terms of time that they have gotten to see me, 6 months to a 
year.
    I would like to give you this for just an educational 
piece. From the time I do a breast biopsy, patients ask, how 
much time do I have to decide before I need to do something 
more definitive? What is the magical time? Well, that has been 
studied. It is about 6 to 8 weeks, which is enough time to get 
a lot of opinions. But, longer than that, you run the risk of 
this disease acting up again. All we did was a biopsy. We 
didn't do a curative procedure. Six to 8 weeks.
    And patients come in a year after these things have been 
done, sometimes longer. Sometimes the referral slip is yellow. 
So, actuarially, I guess you can make any statistic you want. 
My experience has been quite the opposite.
    Mr. Lazio. Does anybody else want to comment on the survey 
results and what they believe? Fran, do you want to?
    Ms. Visco. It is hard for me not to respond to anything 
when I am given the opportunity.
    Mr. Lazio. Here is the opportunity.
    Ms. Visco. Clearly, here is Josefina Mondada, who is here 
from Texas. Here is one of those numbers. This is someone who 
initiated treatment, and she is now $26,000 in debt. The woman 
who was going to be invited to testify from Virginia, a very 
similar circumstance. She initiated treatment. But her debt is 
astounding.
    There are women who have creditors knocking on their doors; 
and there are women who initiate treatment but don't follow 
through.
    You heard the story that Ms. Tapp told you about sharing 
medicine. Women are not getting the treatment that they are 
supposed to get, because they have to share it among others. So 
the statistic, while it was a very important study, because it 
did tell us all of the problems and how fragile the system is, 
it is only numbers. It is the women who tell the story, and 
these stories are devastating.
    Mr. Lazio. Doctor, because we didn't have a chance to talk 
about these two clinics that you have founded and you now 
operate, tell us a little bit about that, if you can, and also 
what would the impact be in terms of the breadth of service if 
you had a Medicaid option, if there was a Medicaid 
reimbursement in our backyard.
    Mr. Klausner. The clinics are basically set up to be a 
referral center from the clinic system in Suffolk County. 
Physicians who have patients screened traditionally have to 
send them elsewhere. They didn't exactly know where. They 
usually ended up at the larger tertiary hospitals.
    We decided we would create a breast program at these 
centers which started out 1 day a month. It is now 2 days a 
week. And we see patients that are referred with positive 
mammogram, palpable mass, and we treat them from that point 
going forward.
    The bill would be effective, because after I do my portion, 
which is surgery for a diagnosis and definitive care, sometimes 
they require--the lymph nodes are positive. They require 
chemotherapy. That is when we start running into problems.
    I have an oncologist who does a lot of work for me in the 
private sector, so he is more apt to be favorable for this, but 
he has to fill out reams of paper to get medication under 
indigent--there is an indigent drug plan.
    So here is a fellow I am asking to do something for free, 
and he is filling out reams of paper just to get the medicine 
to give to the patient. There are a lot of oncologists around 
they won't do it for me, and I don't blame them. They are not 
bad people.
    Mr. Lazio. How about--you mentioned oncologist. How about 
radiologist, plastic surgeons? Are you having any more 
difficulty recruiting people who have these specialty areas 
that are also part of the continuum of service?
    Mr. Klausner. Radiologists we don't have a problem because 
they are part of the CDC program for diagnosis. I have not to 
this date in the 5 years that I have been doing the plan been 
able to get a woman reconstructed who has had a mastectomy 
since they are all choosing mastectomy or a great portion of 
them are choosing mastectomy, which really makes me wonder, but 
there is nothing I can do about it.
    They have had a mastectomy, and that is the way they stay, 
because a breast prosthesis costs thousands of dollars and a 
Tram flap, which is a natural kind of prosthesis where they 
take a portion of the lower abdomen and graft it up there to 
create not a prosthesis, not official, but a real part of you, 
plastic surgeons charge between 5 and $10,000 for that 
procedure. I am not getting that for free.
    Mr. Lazio. Thank you.
    Mr. Bilirakis. Thank you.
    Ms. Eshoo.
    Ms. Eshoo. Thank you, Mr. Chairman. We have been in this 
hearing room for quite a while today, the better part of the 
day. As is often the case, each one of us listens but we look 
around. So as I continue to look around the room, I want to pay 
tribute to everyone that is here. I see a lot of badges and 
tags and all of that. I think they are real badges of courage 
because you--I know that you are all part of this effort and I 
want to salute you and you wouldn't be here unless you had 
experienced something. And I am sure that many of you have to 
travel a long way, spend a lot of money out of your own pocket 
so I want to acknowledge you and let you know that when I was 
looking around, I was seeing as well. It wasn't just a blank 
stare.
    Dr. Klausner, you are really, I think, a man of great 
integrity and I would just like to make a comparison for 
especially the committee members. When I asked Dr. Lee to tell 
her story, it was done in a completely different way. I 
understand that because she is representing a program and comes 
out of an agency and there are all kinds of politics in and 
around all of that. People get territorial and then they get 
hingy because one has to answer to the other and there are all 
kinds of layers. Some of it is hierarchial and we all 
understand that; however, her language was the language of 
numbers and when we peel the onion skin back, those numbers are 
not how they were originally presented. Where they were 
originally presented--that 92 percent of the women that are 
screened get treatment--i.e., we don't need this bill.
    In the language of this doctor, he has told us, as has Ms. 
Tapp, as has Fran Visco and I believe Ms. Braun, although I 
wasn't able to connect all the dots in your testimony when I 
read it, that it points to that it is not happening. And so I 
thank you, Doctor, for doing that because you did it through 
your own experience. You explained the shortcomings that are in 
the system, how we can do better. I can't help but think of 
something that my father said all of his life, and he lived a 
long, magnificent life and he was a great believer in this 
country, a great patriot. I used to ask him why he so believed 
in our system and government, in politics, in public service 
and he said, look, in this great country, there is only one 
class of citizenship. That is first class. We just have to make 
sure that we bring everybody to the same starting line so they 
can enjoy it.
    So what you have pointed out really fits back into to what 
my magnificent father said. We don't have to overcomplicate 
this. We can ask all kinds of questions and they are important 
to ask about the program, about the statistics, and all of 
that. You have provided, I think, the most powerful, powerful 
examples. Women are not looking for people to feel sorry for 
them and to have more charity in this country. Usually we are 
the care givers and the charity makers. So this isn't about 
feeling sorry for women. It is about, as Ms. Visco said, 
filling out and completing a program that the Congress began. 
It is as simple as that and it is profound as that. I mean for 
Ms. Tapp coming all the way from Los Angeles to say that women 
of color especially, need this bill. Because we know in poorer 
communities it is worse. I mean, aren't we ashamed of that? Is 
that something to be proud of in this country? I was taught 
never to take someone else's medicine. You don't know what's in 
that prescription. What may work for one body could be poison 
to the next person. And yet this is going on right now. And as 
Fran Visco so eloquently put it, this is the completion of a 
program. This is not favoritism. You never pit AIDS against 
breast cancer against cervical cancer against prostate cancer. 
We can address all of these things. The ingredient that is 
missing here in the prescription is political will.
    So thank you for listening to my speech, but I picked up 
and I am inspired by what each one of you have said and this 
has been an outstanding panel and I think that you have really 
raised up in a very important and profound and practical way 
what we are trying to achieve here, and I thank you and I 
salute you and I pray we don't disappoint you and the people 
you represent and take such good care of.
    Thank you.
    Mr. Bilirakis. Thank you. Ms. Capps.
    Ms. Capps. Thank you, Mr. Chairman, and I realize I am sort 
of winding things up here. I was just joined by some 
constituents briefly from San Luis Obispo, California, and it 
is a rural county, and I am going to make just the comment that 
the issues that we have been talking about, finding services 
for women with this particular tragedy in their lives. Dr. 
Klausner, you are eloquent as you have portrayed for us some of 
the range of needs that women have and I might mention that if 
you happen to come from a rural area, any of the rural areas 
across our country, the frustrations and the difficulties can 
be compounded by lack of services available. I am so impressed 
with this panel and I thank you, each one, for participating. 
You have given life and blood to the cold numbers that we have 
heard previously and I am convinced that the organizations that 
you represent, the National Breast Cancer Coalition, the Susan 
G. Komen Foundation, and the Women of Color Breast Cancer 
Survivors Support Group, you are the reason this bill is now in 
legislation. You have given us the impetus, the motivation to 
do our part and there are various pieces to be--roles to be 
played and I want to hear--I am going to ask Ms. Tapp, if you 
would start at least, you were so eloquent in talking about the 
women whose lives you are intertwined with because you even 
shared your medication with them. You got us to this point.
    If we should pass and be so fortunate to pass this 
legislation, your work is not going to be finished. We are not 
taking the place of this network because it is such a complex 
situation that it is going to take everything that all of us 
can do and it is about partnerships, is what it is about. It is 
really just about us doing our part and you have the bulk of 
the work still to do at the community, at the grass roots 
level. And Ms. Tapp, if you could respond to that. If we can 
pass this bill, then how can you see yourself relating to your 
sisters at home?
    Ms. Tapp. Well, if this bill is passed, I can see more of 
my sisters living. They won't be dying at such young ages like 
age 25, 27 years old. If this bill is passed, we won't have to 
get out and scramble around looking for a place to send them 
when they are diagnosed. We will have a stationary place and it 
will help in the long run.
    Ms. Capps. So you will still keep up your work of 
supporting them because that is still going to need to happen 
and maybe even finding some of the other pieces to put in 
place.
    Ms. Tapp. As president of the organization, I am not a paid 
person. I am a volunteer and dedicated to what I do, because I 
know what I went through and I wouldn't want anyone to go 
through the things that I have gone through or see the things 
that I have seen. So I am dedicated to the work that I do.
    Ms. Capps. Maybe someone else since the buzzer hasn't gone 
off. If you would like to respond, please, Ms. Braun.
    Ms. Braun. I would hope that we could see even more women 
who would live as a result of these efforts by including that 
85 percent who are not yet touched in this health care system, 
you know, treating the huge majority of need there and that we 
also recognize that as an optional program, perhaps the very 
poorest of States--Mr. Green brought this up earlier--may not 
indeed accept that option. States often don't accept Medicaid 
options that are available and we do want to be sure that the 
women who are screened are treated so that we have to be sure 
that we are closing the full gap.
    So I would urge whatever action is possible on behalf of 
the committee to ensure that those gaps are closed as well to 
work with us to do that, that not just the women who come 
through this particular program but any program who are 
screened and diagnosed and not able to may have assistance.
    Ms. Capps. If I could make a last comment. The whole 
purpose of the early detection and screening program is cost 
savings. It is so much easier in terms of women's lives and 
also money, resources to get in there quickly with a tiny 
little lump and that first stop and the treatment then, as you 
said, Dr. Klausner, 6 to 8 weeks and then we are fine. But 6 
months, then it is so expensive.
    Thank you so much.
    Mr. Bilirakis. You have been a terrific panel. You are the 
grass roots and so important. It is just like I guess Ms. Tapp, 
somebody, made a comment about the CDC inquiring to see if the 
program treatment is working and that sort of thing but did 
they in fact check with the actual people who are receiving the 
treatment. And so you have helped us an awful lot in that 
regard. We will have additional questions of you and we will 
submit them to you in writing. We would request appropriate 
responses if you would, please.
    Before we adjourn, I would like to announce that the 
Subcommittee on Energy and Power, that I also sit on, has a 
hearing scheduled in this room following this hearing and it 
would be appreciated if the audience and our witnesses would 
vacate the room as quickly as possible so that the room could 
be reset for that hearing. Thank you for your cooperation. 
Thanks for your patience.
    Ms. Eshoo. Mr. Chairman, would you yield to me for a 
moment?
    Mr. Bilirakis. I would be glad to.
    Ms. Eshoo. I want to once again thank you for holding the 
hearing. We all know that a hearing does not make a bill. And 
so you can tell what my next question is going to be. What do 
you intend to do relative to moving this to a markup? I know 
that there are timeframes to be considered. I think that much 
has been flushed out today. I know that you will keep in mind 
when you speak to the chairman of the full committee, Mr. 
Bliley, that 75 percent of the Commerce Committee are 
cosponsors. So it is not that Congressman Lazio and I are being 
pesky flies in this and that there are only two. It is more 
than the majority of this powerful committee.
    Mr. Bilirakis. I pointed all that out to him before this 
hearing.
    Ms. Eshoo. Can you give us some----
    Mr. Bilirakis. I can't do that. You should know better than 
that.
    Ms. Eshoo. I don't know. That is why I am asking.
    Mr. Bilirakis. We have at least one markup, maybe two next 
week. We have a couple of hearings scheduled. We have managed 
care legislation that we trust is going to be rearing its head 
during the next few days, whether it be in this subcommittee, 
full committee, on the floor. We don't know yet. Any further 
addressing at this legislation is going to be starting in 
September, in the fall obviously. It can't take place in the 
next 2 weeks because we have of course the break coming up.
    Ms. Eshoo. We will be ready.
    Mr. Bilirakis. I think that we all believe that something 
more needs to be done here. Obviously we all have parameters 
that we have to work under. But with the hearing like this and 
the help that we have got from you and the testimony and what 
not, it has eased it I think tremendously. Thank you.
    Ms. Eshoo. Thank you, Mr. Chairman.
    [Whereupon, at 2 p.m., the subcommittee was adjourned.]
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