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NATIONAL BREAST CANCER COALITION
« a grassroots advocacy effort
»
1707 L Street, NW, Suite 1060
Washington, DC 20036
CLINTON LIBRARY PHOTOCOPY
PHOTOCOPY
PRESERVATION
JENNIFER L. KATZ
Manager, Government Relations
NATIONAL BREAST CANCER COALITION
1707 L Street, NW, Suite 1060
Washington, DC 20036
phone: (202) 296-7477
direct line: (202) 973-0595
fax: (202) 265-6854
e-mail: [email protected]
NATIONAL BREAST CANCER COALITION
grassroots advocacy effort.,»
Nicole
Robner
1
The National Breast and Cervical
Cancer Early Detection Program
AT-A-GLANCE
1999
Screening
Quality
Services
Assurance
Public
Professional
Education
Education
Outreach
Partners
Surveillance
& Coalition
Tracking &
Development
Follow-up
"Over 1.2 million women have taken advantage of services provided through CDC's National
Breast and Cervical Cancer Early Detection Program. Less than a decade old. this program
now operates in every state in the country. providing recommended screening to low-income
women. Yet we are still only able to reach 15% of the eligible population. As a nation. we must
step up our commitment to reaching all women."
Jeffrey P. Koplan. MD. MPH
Director, Centers for Disease Control and Prevention
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention
CDC
CENTERS FOR DISEASE CONTROL
AND PREVENTION
Breast and Cervical Cancer Screening: Preventing Unnecessary
Deaths Among Women
An estimated 2 million American women will be
diagnosed with breast or cervical cancer in this decade.
Benefits of Screening
and half a million women will lose their lives to these
diseases. A disproportionate number or deaths will be
Mammography is the best way to
among women of minority and low-income groups.
detect breast cancer in its earliest,
Many or these deaths could be avoided by making
most treatable stage-an average
screening services available to all women at risk. Such
of 1.7 years before the woman can
screening measures could prevent approximately 15%-
30% of all dearhs from breast cancer among women over
feel the lump. Mammography also
the age of 40 and virtually all deaths from cervical cancer.
locates cancers too small to be felt
Excluding skin cancer. breast cancer is the most
during a clinical breast examination.
common cancer among American women and is
second only to lung cancer as a cause of cancer-related
The primary purpose of cervical
death. An estimated 175,000 new cases or breast
cancer screening-which is
cancer among women will be diagnosed in 1999. and
performed by the Papanicolaou (Pap)
43,300 women will die of this disease.
test-is not to detect cancer but to
The incidence of invasive cervical cancer has decreased
significantly over the last 40 years, in large part because
find precancerous lesions. Detection
of early detection efforts. Even SO. an estimated 12,800
and treatment of such lesions can
new cases of invasive cervical cancer will be diagnosed
actually prevent cervical cancer.
in 1999, and 4,800 women will die of this disease.
In most cases, the earlier breast cancer is detected. the
Cervical cancer screening also offers great benefits.
better the survival rate. When breast cancer is
For a woman found to have precancerous cervical
diagnosed at a local stage. the 5-year survival rate is
lesions or to have cancer in its earliest stage. the
97%. When breast cancer is diagnosed after it has
likelihood of survival is almost 100% with timely and
spread, the 5-year survival rate decreases to 21%.
appropriate treatment and follow-up.
CDC's National Breast and Cervical Cancer Early Detection Program
Recognizing the value of screening and early
to screening and follow-up services. increase
detection, Congress passed the Breast and Cervical
education and outreach programs for women and
Cancer Mortality Prevention Act of 1990. This act
health care providers. and improve quality assur-
authorized CDC to provide critical breast and cervical
ance measures for screening. Despite its success in
cancer screening services to underserved women,
screening more than a million women, with existing
including older women. women with low incomes, and
resources the NBCCEDP is able to screen only
women of racial and ethnic minority groups.
12%-15% of the eligible population for these two
Through its landmark National Breast and Cervical
cancers.
Cancer Early Detection Program (NBCCEDP). CDC
The legislation for NBCCEDP does not authorize
now supports screening activities in all 50 states. in
CDC to pay for treating breast and cervical cancer.
5 U.S. territories, in the District of Columbia, and
However. participating state programs have been
through 15 American Indian/Alaska Native
determined and creative in ensuring that treatment
organizations. By October 1997. more than 1.5 million
services are available for women diagnosed with breast
screening tests had been provided by the NBCCEDP.
cancer or cervical abnormalities. The availability of
Fiscal year 1999 appropriations of approximately
treatment sources reflects the extent of state and local
S158 million enable CDC to establish greater access
government support. the generosity of medical
providers. and the commitment of communities.
2
CDC'S National Leadership
Screening alone is not sufficient to prevent
screening and diagnostic guidelines to all state-based
unnecessarv illness and death. Essential technical and
programs and assists states in evaluating their clinical
scientific underpinnings must be in place at the
services.
national level to support state-based programs. CDC
CDC recently evaluated how early derection programs
collaborates with state health agencies. professional
in seven participating states (California. Michigan.
and voluntary organizations. academia. and other
Minnesota. New Mexico. New York. North Carolina.
rederal agencies to ensure that the following elements
ind Texas) developed strategies to obtain resources
are in place to serve as resources for states:
not only tor diagnostic services. for which the
Quality assurance.
NBCCEDP provides funding, but also for treatment
Program tracking and evaluation.
services. which the NBCCEDP requires participating
states :0 provide but cannot by law! reimburse.
Professional education.
Results or the study indicate that treatment had been
Public education and outreach.
initiated for limost all NBCCEDP clients in whom
cancer was diagnosed. However. the programs pointed
Ensuring Quality Screening and Follow-Up
out that the approaches used to obtain these services
Services for Women
were short-term. labor-intensive solutions that
Quality assurance is essential if screening for eariv
diverted resources away from screening activities.
detection is to be an effective tool for controlling
As more women are screened by the NBCCEDP.
cancer. To help ensure the quality of the screening
participating health agencies and providers will
and follow-up process. CDC has collaborated with the
experience greater chailenges in obtaining sufficient
American College of Radiology to improve and certify
resources for treating women with breast and cervical
the quality of mammography screening, developed
cancer. CDC has expanded ITS case management
guidelines on the evaluation of common breast
services to help women overcome financial. logistical,
problems. used program data to monitor health
and other barriers to these services. However, more
outcomes, and issued recommendations on a public
formalized and sustained mechanisms need to be
health response to the regulatory closure of cervical
instituted to ensure that all women screened have
cytology laboratories. In addition. CDC provides
ready access to appropriate treatment and follow-up.
Number of Screening Examinations
Among NBCCEDP* Participants. FY 1991-1997
250.000
207.590
203.069
200,000
185,824
166.231
150.000
137.353
134.602
107 324
96.352
100.000
67,788
50,000
42.345
26.259
0
'91-'92
1993
1994
1995
1996
1997
'91-
a
1993
1994
1995
1996
1997
Mammograms
Papanicolaou tests
Total = 721.666
Total = 351.813
Total examinations = 1,573,484
'CDC'S National Breast and Cervical Cuncer Early Derection Program.
3
Tracking Program Outcomes
To better target critical screening activities, CDC
Barriers to Screening
works with states to collect critical information
to monitor program progress in reaching women
Fear. Women may be afraid to discover
and derecting cancer. Since its inception. the
that they have cancer.
NBCCEDP has
Provided over 700,000 mammograms to women.
Cost. Many women cite cost as the
Of this number. over 48.000 were abnormal. and
reason they do not use early detection
over 3.600 cases or breast cancer were diagnosed.
programs. Many are not aware of the
Provided over 850,000 Pap tests.
availability of low-cost programs.
Of these. over 25,000 were abnormal. and over
26.000 cases or precancerous lesions were
Lack of Transportation. For many
diagnosed. Over 400 cases of invasive cervical
cancer were diagnosed.
women who lack transportation. con-
CDC also provides and tracks diagnostic evaluations
venient location of screening facilities
for women who have had abnormal results through
is important.
screening initiated by providers not invoived with the
NBCCEDP.
Communication Barriers. Communica-
Public Education and Outreach: Eliminating
tion styles and methods appropriate for
Barriers to Screening
one group may be inappropriate for
another.
CDC collaborates with health care professionals and
organizations, human service and voluntary organ-
izations. academia. and health agencies participating
Lack of Physician Referral. Studies have
in the program to address barriers to screening.
shown that women are more likely to be
screened if their physician recommends
National Collaboration
screening.
Examples of CDC collaboration with national
organizations include the following:
Lack of Child Care. Some women need
CDC collaborates with the American Cancer
assistance with arranging child care to
Society (ACS) to develop and disseminate
be able to use screening services.
comprehensive information on cancer prevention
and early detection. Through CDC, ACS divisions
have formed partnerships with state health
departments to increase screening services to
through the sale of Its Breast Cancer Awareness
medically underserved women. CDC and ACS
pink ribbon products. Since 1993. about 300
collaborate in many programmatic areas, including
community-based programs in 49 states and
establishing program infrastructure and public and
Puerto Rico have received funding from Avon's
professional education activities.
program through the YWCA or the U.S.A. and
A unique public-private partnership was
NABCO to educate women about breast cancer
established among CDC, Avon Products Inc.,
and to provide underserved women with access to
the YWCA of the U.S.A., the National Alliance
early detection services. Beginning in 1998, all
of Breast Cancer Organizations (NABCO), and
funding of community-based programs was
the National Cancer Institute. Avon's Breast
consolidated under the Breast Health Access
Cancer Awareness Crusade has raised more than
Fund administered by NABCO.
$25 million for breast cancer programs nationwide
4
States Take Action to Educate Women
hosting of prayer breakfasts. workshops and
With CDC's leadership. state-based programs have
forums. and pink ribbon teas: the distribution of
made significant progress in building state and
literature and pink ribbons: and the publication
or announcements in religious builetins. in
community partnerships to reach women about the
addition. on Sundavs activities focusing n
benefits or screening and early detection. Various
screening awareness have been conducted with
outreach activities have been designed to educate
testimonies from survivors and educat: natiniks
women and motivate them to be screened. For
on breast health.
example.
The Cherokee Nation of Oklahoma is
New Jersev's state health department :-
developed in educational Videolin The
collaborating with the University of Medicine
importance :[ breast elf-examination
and Dentistrv or New Jersey and the YWCA to
American Indian women. Funded The
reduce screening barriers by offering educational
Avon Breast Health Access Fund. The Tue:
outreach and access to screening. Program starf
highlights three American Indian Lander
make monthly visits to senior housing complexes
survivors advocating for early detection manuen
and other settings where women congregate (e.g.,
breast self-examination.
beauty parlors and supermarkets) to present in
educational program designed for minority women
aged 50 and older and to schedule appointments
for screening in a mobile mammography unit that
comes to the site 2 weeks later.
Percent Distribution of Screening Examinations
Arkansas' "Hats Off to Health" is a light-hearted
Among NBCCEDP* Participants. by Race/Ethnicity.
but informative skit in which characters contront
FY 1991-1997
reasons women often give for not having breast
Mammograms
Other
Hisbanic
cancer screening. Over 600 women have attended
5.2%
18.3%
the program; surveys found that this nonthreatening
American indian/
approach to breast cancer screening education was
Alaska Native
7.0%
effective in reducing perceived barriers to
Asian
mammography.
3.0%
Massachusetts Breast and Cervical Cancer
Black. non-Hispanic
16.0%
White. non-Hispanic
Initiative has established partnerships with a
50 3^..
variety of community agencies already active in
conducting outreach in racial and ethnic minority
Papanicolaou Tests
communities. Using a health circle model. groups
Other/Unknown
Hispanic
5.8%
meet in spaces that are familiar, accessible. and
19.6%
comfortable (e.g., homes. churches. and local
American Indian/
agencies such as immigration offices). The health
Alaska Native
3.3%
circle model has proved especially successful in
Asian
promoting screening among older Southeast
2.7%
Asian women.
Black. non-Hispanic
13.9%
White. non-Hispanic
Washington. D.C.'s breast and cervical cancer
49.2%
program has recruited a woman minister to work
with Project WISH to raise breast health
CDC's National Breast and Cervical Cancer Early Detection Program.
awareness in the faith community. Over 20
activities have been implemented. including the
5
Partnerships for Cancer Control in
Populations at Higher Risk
Partnerships that tocus their prevention efforts on
those at greater risk are essential for understanding
and alleviating disparities. Both mammography and
CDC funds the following partners to promote
Pap tests are underused by women who are members
screening among populations at higher risk:
or racial and ethnic minority groups. have less than a
high school education. are older. or live below the
American Social Health Association
poverty level.
Association or Asian Pacific Community
CDC funds 1 strong and effective network or partners
Health Organizations
that are well-positioned in communities 10 risk. These
Bavior College of Medicine. Salud en Accion
partners have developed projects that are rocused on
Program
underserved populations and cover a wide range of
public and professional education interventions. For
Institute for the Advancement of Social Work
example. many projects are involved with developing
Research
low-literacy, bilinguai. and culturally appropriate
Mauther Project for Lespians with Cancer
educational materials that are used in diverse training
and outreach programs and educational campaigns.
National Asian .Vomen $ Health Organization
The various interventions used by the different
National Association or Community Health
projects result in the common goal of increasing
Centers
access to and use of screening services for priority
populations.
National Caucus and Center on Black Aged. Inc.
National Center for Farmworkers Health. inc.
Professional Education: Enhancing Health
National Education Association Health
Care at the Source
Information Network
Professional education is designed to enhance the
quality of care that women receive. Through
National Hispanic Council on Aging
education. the NBCCEDP has assisted a wide range of
U.S. Conference or Mayors' Research and
health care professionals-including physicians.
Education Foundation
nurses. radiology technologists, and cytologists-to
The Witness Project
better understand their key roles in the early detection
of breast and cervical cancer.
World Education
In 1998. CDC's National Training Center provided
two training programs and one self-study
informational packet for health professionals. For
1999. CDC is developing a self-study packet on
follow-up of abnormal findings from clinical breast
examinations and mammograms and a workshop and
self-study packet on evaluation-based work plans that
will assist personnel in state and local health agencies
and tribal organizations.
For more information or additional copies of this document, please contact the
Centers for Disease Control and Prevention,
National Center for Chronic Disease Prevention and Health Promotion. Mail Stop K-64,
4770 Buford Highway NE, Atlanta, GA 30341-3717, (770) 488-4751.
Voice Information Svstem: 1 (888) 842-6355 Fax: (770) 488-4760
[email protected] http://www.cdc.gov/cancer
6
Acknowledgments
Follow-Up and Treatment Issues in
Funding for this study was from the Centers for
Disease Control and Prevention, Division of
the National Breast and Cervical
Cancer Prevention and Control
Cancer Early Detection Program
The study was designed and implemented by a
team of investigators from Batteile Centers for
Public Health Research and Evaluation and the
Study Results
University of Michigan School of Public Health
January, 1998
Research Team
Goals of the Study
Battelle Centers for
Public Health Research
University of Michigan
To document strategies and methods used by
and Evaluation:
School of Public Health:
states to obtain follow-up diagnostic services not
covered by NBCCEDP funds.
Lowell Sever, Ph.D.
Paula Lantz, Ph.D.
To document strategies and methods used by
Martha Hare, Ph.D.
Lisa Richardson, M.D., M.P.H.
states to obtain treatment services for clients
Cartyn Orians, M.A.
Deb Macklem, M.Ed.
diagnosed with CIN or cancer.
Jane Schulman, Ph.D.
To identify strategies that are perceived as
successful or innovative in securing diagnostic and
treatment resources.
Flow of Follow-Up and Treatment Activities
Research Questions
Focus of Case Study
What guidelines, policies or methods have been
State Breast and
developed and implemented by states to ensure
Cervicel Cumm
Screaming
Diagnoss
Treatment
that women with abnormal screening results and
Early Describes
/
women diagnosed with cancer or precancerous
lesions receive diagnostic follow-up and treatment
services?
How is the component of the program that
identifies and secures diagnostic and treatment
Strangies . -
Strumgies - help
I I I
- - -
services organized?
obtain disgnostic
1) - - to
they -
-
What role do coalitions or other partnerships play?
n
-
Research Questions
Phases of the Study
Phase I: Care set of data on 35 programs
Have the methods or tacties being used to identify
and secure diagnostic and treatment resources
changed with time. and do they differ within the
Phase II: In-depth case study of 7 states
individual state programs or across programs?
What are the key lessons learned regarding
Phase III: Linkage study (in process)-Tumer
diagnostic and treatment services in a program such
registry data and program data from 3 states (CA,
as the NBCCEDP?
MI. NM) were linked to document timing of
treatment initiation and initial course of cancer
treatment
What is a Case Study?
Conducting a Case Study
A case study seeks to understand the way in which a
Determine
Sales -
Crime Car
program. system. or organization works within its
Projects
Landuating
Evenue for
everyday setting
Case in
Date
I
the Study
Collection
It focuses on a particular problem, issue, or structure
Email:
Quantitue
a Madel
which is studied in relationship to the larger program.
- be
of Program
Design Date
Annuared
Common
Collection
system. or organization
Through
Date
-
Research
Collection
While describing this relationship, the case study may or
may not lead to conclusions about outcomes
Purforms
I
Develop Date
A case study uses all appropriate sources of
Date
Case Sandy
Analysis Plan
Analysis
evidence - written, observational, and interview - that
may be analyzed both qualitatively and quantitatively
Case Study Selection Criteria
Case Study States
Provided screening for at least three years
State
Number of Breast
Region
Cancers Diagnosed
Diagnosed 60 or more breast cancers since
California
168
West
screening began
Michigan
249
Midwest
Representative of the following stratification
Minnesota
137
Midwest
criteria:
New Mexico
169
West
Centralized versus decentralized programs
Geographic region of United States
New York
173
Northeast
Urban/rural mix of the population
North Carolina
106
South
Racial and ethnic diversity among program clients
Texas
307
South
How Did We Conduct the
How Did We Conduct the
Case Study?
Case Study?
Contacted the coordinator for each of the seven
Interviewed State BCCEDP Coordinator and
programs to schedule site visits, and to obtain
other staff who work with diagnosis and
background information
treatment issues
Reviewed documents supplied to us by the state
Interviewed local coordinators and providers
program, such as organizational tables, reports
in a variety of settings throughout the state
and articles
Interviews were tape recorded, transcribed,
Traveled to each state and briefed state BCCEDP
and entered into a word processing database
staff regarding the project at the beginning of
each state's site visit
How Did We Analyze the Data and Write
How Did We Analyze the Data and Write
the Case Study State Summaries?
the Case Study State Summaries?
The Project PI and the Case Study Coordinator
Using the analyzed transcripts, a member of the
developed a codebook based on the research
site visit team developed a state summary
questions in the Case Study Protocol
Each member of the site visit team reviewed the
Using the codebook, the PI and Coordinator
state summary
worked together to achieve 80% inter-rater
The summary was then sent to state program
agreement on the use of codes for text, and then
staff and other interviewees for review
trained one other team member
Reviewer feedback was incorporated into a
All interviews were coded and entered into a text
revised state summary
analysis software
Number of Interviews
Case Study Results
by State and Role
Site visits were conducted February-June, 1997
TOTAL
CA
MI
MN
NM
NY
NC
TX
A total of 126 interviews were conducted
State staff
58
13
4
11
4
,
10
7
A total of 192 people were interviewed
Local staff
15
2
2
2
4
4
1
Screening
=
3
6
&
,
7
n
8
provider
Dx or Tx provider
45
7
4
9
3
3
13
6
Advisory Board
10
:
1
J
I
2
I
Coalition member
Other
4
.
I
2
1
TOTAL
192
:7
16
12
21
14
49
23
Strategies Used to Ensure Provision of
Strategies Used to Ensure Provision of
Diagnostic and Treatment Services
Diagnostic and Treatment Services
Common Approaches at the Local Level:
Common Approaches at the State Level:
Bill insurance
Assist clients in applying for Medicaid, Hill Burton
Clients followed through use of tracking and
funds, other assistance programs
follow-up systems
Referral to public hospital
Requirements in contracts with providers
Charity care, donated services
Appeals to providers through state medical
Case rotation
societies, professional associations, etc.
Reduced fees
Negotiated payment plans
Clients pay fee for service
Additional Strategies Used by States
General Findings Across States
Blue Cross Foundation treatment fund
CA"
States have found supplemental funds (primarily for
breast cancer diagnostic services)
Race for the Cure fund
MN*
Women diagnosed with cancer who want to be
State breast cancer programs
NY*
treated are receiving treatment
Other state funds
TX*, NC
Strong reliance on providers to find resources
Tobacco excise tax fund
CA", MI
Follow-up handled on case-by-case basis
Providers of last resort
NM, TX
County indigent funds
NM, TX
funds used for breast services only
General Findings Across States
Strengths
Women who need and want cancer treatment are
Solutions, strategies and networks are tenuous
receiving it
and fragile
Programs operate within changing health care
Creative responses and strong partnerships have
environments (i.e. growth of managed care)
emerged at state, local and provider level
Availability of state or foundation funds to
Information lacking for many important issues:
supplement Federal resources
-payment source for diagnostic and treatment services
-out-of-pocket expenses for women
-impact of financial barriers on time delays/refusals
Strengths
Areas of Concern
Centralized tracking systems work well
Lack of financial support for diagnosis and treatment
Program has had positive effect on tracking and
Time and energy required for follow-up is tremendous
follow-up in larger community
Burden of follow-up has led to restrictions in number
of women screened
Several barriers to provider recruitment
- low reimbursement rates (mandated by Congress)
- lack of coverage for all diagnostic follow-up services
- Cability for treatment
- administrative burden of follow-up
Areas of Concerns
Areas of Concern
Some women experience time delays or are lost to follow-up
Categorical nature of program prohibits a more
(especially in regard to cervical services)
comprehensive approach to women's health
A small number of women have refused cancer treatment
Financial access is only one dimension of access to
Coordinating diagnostic follow-up is greater burden than
health care services. Many non-financial barriers
arranging treatment
impede follow-up care:
Resources states have developed are short-term solutions,
- logistical barriers (e.g. transportation, scheduling)
and difficult to manage/administer
- cultural barriers (e.g. language barriers, fatallstic attitudes,
fear)
- immigration issues
Respondent Recommendations
Conclusions of Case Study
Program should pay for all diagnostic and treatment
Strong response to provision of diagnostic follow-up
services, or at least through definitive diagnosis
and treatment services has emerged
Allow state resources used for all diagnosis and
Wide range of strategies is employed within states;
treatment services to be counted in the 3:1 match
effort at local level is tremendous
Cover anesthesia and other affiliated services
Responses that have emerged are administratively
Increase reimbursement rate for services covered
cumbersome and unstable; long-term solutions are
Increase support for case management and community
needed
infrastructure
Strong commitment to continued growth and success
Universal health insurance
of the NBCCEDP exists at state and local level
Linkage Study -
Linkage Study -
Research Questions
Research Questions
What proportion of women identified through
What are the components (surgery, radiation,
selected states' BCCEDPs as having breast
chemotherapy, hormonal therapy) of the
or cervical cancer did not receive an initial
initial course of cancer treatment for women
course of treatment, based on registry
identified through the BCCEDPs as having
records?
breast or cervical cancer?
What characteristics of women and their cancers
What characteristics of women and of their
are associated with not receiving treatment?
cancers are associated with the content of the
initial course of treatment?
Linkage Study -
Linkage Study -
Research Questions
Research Questions
What is the time interval between abnormal
How does the information from the program
screening and diagnosis?
database compare with the corresponding
What is the time interval between diagnosis
information from the cancer registry database?
and treatment?
How do women screened through the program
What characteristics of women and their cancers
compare with all women in the registry with
appear to be related to these time intervals?
regard to patterns of diagnosis and treatment?
CDC
March 27, 1998 / Vol. 47 / No. 11
209 Imported Dracunculiasis -
United States, 1995 and 1997
MMWR
211 Update: HIV Counseling and Testing
Using Rapid Tests - United States,
1995
215 Strategies for Providing Follow-Up
and Treatment Services in the
National Breast and Cervical
Cancer Early Detection Program -
United States, 1997
MORBIDITY AND MORTALITY WEEKLY REPORT
218 World Health Day - April 7, 1998
219 Notices to Readers
Imported Dracunculiasis - United States, 1995 and 1997
Dracunculiasis is a parasitic infection caused by a filarial worm (Dracunculus medi-
nensis [i.e., Guinea worm)) that is transmitted through contaminated drinking water.
Approximately 1 year after a person is infected, one or more meter-long adult female
worms begin to emerge through the skin, often incapacitating the patient for ≥2
months. Despite a dramatic decrease in cases worldwide, dracunculiasis is still occa-
sionally imported into the United States. Since 1995, two cases of dracunculiasis have
been reported in the United States, both imported from Sudan. This report summa-
rizes the investigation of these cases.
Patient 1. A 9-year-old girl residing in Tennessee had emigrated from Sudan in Sep-
tember 1995 (1). Before the girl left Sudan, a Guinea worm had emerged and had
been extracted from her right lower leg. The lesion had healed when she arrived in the
United States. After she had been in the United States for 3 weeks, another Guinea
worm began to emerge from her left leg. Medical examination at a local health clinic
revealed a string-like worm dangling from a lesion on her left leg, and she was re-
ferred to an infectious disease specialist. The leg was secondarily infected and swol-
len, and the girl was unable to walk. Despite antibiotic treatment, her cellulitis did not
improve, and the lesion was surgically opened, drained, and debrided of pus, necrotic
debris, and fragments of the Guinea worm. The patient was hospitalized for 2 weeks,
requiring surgery to stretch a contracture of her ankle and to apply a skin graft to the
wound. After outpatient physical therapy, she was able to walk without crutches.
Patient 2. A 31-year-old woman residing in Connecticut had emigrated from Sudan
in January 1997. In April 1997, she was evaluated at a university clinic for possible
tuberculosis (TB). A radiograph revealed lung lesions consistent with TB and a worm-
like calcification in her left chest. Physical examination revealed multiple, indurated,
oval lesions 4-8 cm in diameter on both lower legs. The patient reported the lesions
had been present for 1 year and were intermittently painful. She recalled that a long
string-like worm had emerged from her leg during the previous year. Biopsy of the leg
lesions revealed erythema induratum, consistent with Bazin disease, a cutaneous
manifestation of TB. The patient had evidence of a dead and calcified Guinea worm in
her chest and a history suggesting a live Guinea worm had emerged from her leg
before she arrived in the United States. She also had pulmonary TB with a cutaneous
tuberculid skin manifestation. Treatment with isoniazid, rifampin, and pyrazinomide
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Vol. 47 / No. 11
MMWR
215
HIV Counseling and Testing - Continued
ing that persons who receive preliminary results understand the meaning of the result
and prefer rapid testing (4). When additional rapid tests become available for use in
the United States, the PHS will re-evaluate algorithms using specific combinations of
two or more rapid tests for screening and confirming HIV infection.
References
1. Kamb ML, Bolan G, Zenilman J. et al. Does HIV/STD prevention counseling work? Results from
a multi-center randomized trial (Project Respect) [Abstract 01341 In: Program and abstracts of
the International Congress of Sexually Transmitted Diseases. Seville, Spain: Association for
Research in Clinical Microbiology, 1997:83.
2. CDC. HIV counseling and testing in publicly funded sites: 1995 summary report. Atlanta: US
Department of Health and Human Services, CDC, September 1997.
3. George JR, Schochetman G. Detection of HIV infection using serologic techniques in AIDS
testing: a comprehensive guide to technical, medical, social, legal, and management issues.
2nd ed. Schochetman G, George JR, eds. New York: Springer-Verlag, 1994.
4. Kassler WJ, Dillon BA, Haley C, Jones WK, Goldman A. On-site, rapid HIV testing with same-day
results and counseling. AIDS 1997;11:1045-51.
5. CDC. Interpretation and use of the Western blot assay for serodiagnosis of human immunode-
ficiency virus type 1 infections. MMWR 1989;38(suppl 7):S4-S6.
6. Stetler HC, Granade TC, Nuñez CA, et al. Field evaluation of rapid HIV serologic tests for screen-
ing and confirming HIV-1 infection in Honduras. AIDS 1997;11:369-75.
7. Kassler WJ, Haley C. Jones WK, Gerber AR, Kennedy EJ, George JR. Performance of a rapid,
on-site human immunodeficiency virus antibody assay in a public health setting. J Clin Mi-
crobiol 1995;33:2899-902.
Strategies for Providing Follow-Up and Treatment Services
in the National Breast and Cervical Cancer Early Detection Program -
United States, 1997
The Breast and Cervical Cancer Mortality Prevention Act of 1990* authorized CDC
to establish the National Breast and Cervical Cancer Early Detection Program
(NBCCEDP) to increase screening services for women at low income levels who are
uninsured or underinsured (1). Although the NBCCEDP covers most diagnostic serv-
ices that women need after receiving an abnormal mammography or Papanicolaou
(Pap) test result, the program does not reimburse for breast biopsies. In addition, the
Act prohibits the use of NBCCEDP funds for cancer treatment. Participating health
agencies must ensure that NBCCEDP clients receive timely, appropriate diagnostic
and treatment services. In 1996, CDC began a case study to determine how early de-
tection programs in seven participating states (California, Michigan, Minnesota, New
Mexico, New York, North Carolina, and Texas) identified resources and obtained diag-
nostic and treatment services. This report summarizes the results of the study (2),
which indicate that respondents in these states reported that treatment had been initi-
ated for almost all NBCCEDP clients in whom cancer was diagnosed. However, re-
spondents also considered the strategies used to obtain these services as short-term
solutions that were labor-intensive and diverted resources away from screening ac-
tivities.
In the seven states, NBCCEDP-sponsored screening services had been provided for
≥3 years, and breast cancer had been diagnosed in ≥60 women. The states were se-
*Public Law 101-354.
216
MMWR
March 27, 1998
National Breast and Cervical Cancer Early Detection Program - Continued
lected to provide a range of geographic locations, a combination of urban and rural
populations, and racial/ethnic diversity among program clients. Researchers con-
ducted semi-structured interviews with 192 persons affiliated with the seven state
programs. Of these interviewees, 120 (63%) were providers of screening, diagnostic,
and/or treatment services; 58 (30%) were state program staff; and 14 (7%) were coali-
tion members. Interviews included topics such as guidelines related to diagnostic and
treatment services, strategies used to obtain and pay for services, level of effort re-
quired to secure these services, and changes in strategies over time. Each interview
was tape recorded and transcribed. Using a systematic scheme derived from the re-
search questions, three researchers coded the same transcripts until an inter-rater
agreement of 80% was reached. Thereafter, all transcripts were coded independently.
Coding results were entered into text analysis software that sorts text from transcripts
into sets of information, themes, and evidence relevant to the specific research ques-
tions (3). The results reflect a synthesis of the interviewees' responses.
Respondents described several strategies used to ensure necessary diagnostic and
treatment services for women screened through the NBCCEDP. State-level strategies
in all states included 1) computerized tracking and follow-up systems that used pro-
gram surveillance data to identify and manage clients in need of diagnostic and treat-
ment services; 2) provisions in contracts requiring screening providers to arrange for
diagnostic follow-up and treatment before screening women; and 3) arrangements
with provider groups and state professional associations for free or reduced-cost serv-
ices for NBCCEDP clients. All states also had access to public or private funds to help
support services not covered by the program; such revenue sources included state
appropriations from general or tobacco tax revenues or funds from private founda-
tions. These funds were available primarily for breast diagnostic services.
Local strategies tailored to the needs of individual clients were used to obtain diag-
nostic and treatment services. Common strategies reported by respondents included
the following: providers billed public or private insurance plans; providers or local
health departments helped clients apply for public assistance programs; providers re-
ferred clients to public hospitals; county indigent-care funds and hospital community-
benefit programs financed services; clients received services through individually
negotiated payment plans; and clients paid reduced or full fees for services.
Respondents strongly supported the continued growth of NBCCEDP and its goals
but expressed several concerns. First, considerable time and effort were involved in
developing and maintaining systems for diagnostic follow-up and treatment. Second,
the process of identifying available resources within states for diagnostic and treat-
ment services was considered labor-intensive. Third, the lack of coverage for diagnos-
tic and treatment services negatively affected recruitment of providers and restricted
the number of women screened. Fourth, respondents believed that an increasing
number of physicians will not have the autonomy, because of changes in the health-
care system, to offer free or reduced-fee services to NBCCEDP clients.
Respondents reported that arrangements for treatment were made for almost all
NBCCEDP clients who received a diagnosis of breast cancer or invasive cervical can-
cer. Respondents stated that some women experienced time delays between screen-
ing, definitive diagnosis, and initiation of treatment. State program officials reported
that, according to 1992-1996 surveillance data, small numbers of clients in whom can-
cer was diagnosed (i.e., from three to 13 women in each state) subsequently refused
Vol. 47 / No. 11
MMWR
217
National Breast and Cervical Cancer Early Detection Program - Continued
treatment. Because these clients were not interviewed, it could not be determined
whether financial barriers contributed to their decisions to refuse treatment or their
loss to follow-up.
Respondents were concerned that the NBCCEDP did not provide funding for all
diagnostic procedures and treatment for the diseases for which clients were being
screened; approaches for delivering services were fragmented; and the process of ob-
taining resources required substantial effort at the state, local, and provider levels.
Respondents reported that the continuation of every strategy for diagnostic and treat-
ment services beyond the next few years is uncertain.
Reported by: PM Lantz, PhD, Univ of Michigan School of Public Health, Ann Arbor. LE Sever,
PhD, Battelle, Centers for Public Health Research and Evaluation, Seattle, Washington. Program
Svcs Br, Office of the Director, Div of Cancer Prevention and Control, National Center for Chronic
Disease Prevention and Health Promotion, CDC.
Editorial Note: During July 1991-March 1997, the NBCCEDP provided 576,408 mam-
mograms to women aged ≥40 years, and 3409 cases of breast cancer were diagnosed.
During this same period, the program provided 732,754 Pap tests; 23,782 cases of cer-
vical intraepithelial neoplasia and 303 cases of invasive cervical cancer were diag-
nosed. These totals included women referred to the program for diagnostic evaluation
of an abnormal screening result. The NBCCEDP internal estimates suggested that dur-
ing this period only 12%-15% of uninsured women aged 40-64 years in the United
States had been screened by the program (CDC, unpublished data, 1997).
Screening alone does not prevent cancer deaths; it must be coupled with timely
and appropriate diagnostic and treatment services. The Congressional mandate for
NBCCEDP requires grantees to take all appropriate measures to ensure provision of
services required by women who have abnormal screening results. CDC provides
funds for case management to help these women access health-care services. To in-
crease the comprehensive nature of the program, CDC recently approved the use of
NBCCEDP funds for breast biopsies.
The results of this study indicate that state health departments and their partners in
the seven states had developed a wide range of strategies for diagnostic and treat-
ment services in the absence of program resources. However, the time and effort re-
quired to arrange and maintain these services diverted resources away from
screening activities.
This study was subject to at least two limitations. First, the results were based
solely on the experience and opinions of informed professionals affiliated with the
program and did not include the perspectives of NBCCEDP clients. Second, the results
may not reflect the program experiences in other states. Case-study methods, how-
ever, are an appropriate and well-accepted approach to gaining in-depth under-
standing of complex programs in real-life situations (4). The validity of the findings
was enhanced by developing standard instruments to guide the semi-structured inter-
views, protecting the confidentiality of respondents' remarks, using interview tran-
scripts for data analysis rather than relying on interviewer notes, and obtaining
feedback concerning state summary reports from respondents.
As more women are screened by the NBCCEDP, a greater burden will be placed on
participating health agencies, providers, and other partners to obtain resources for
breast and cervical cancer treatment. Case-management services will continue to be
essential in helping underserved women overcome financial, logistical, and other bar-
218
MMWR
March 27, 1998
National Breast and Cervical Cancer Early Detection Program - Continued
riers to receiving these services. Other long-term solutions to ensure that women in
the program receive necessary treatment services are being pursued.
References
1. Henson RM, Wyatt SW, Lee NC. The National Breast and Cervical Cancer Early Detection Pro-
gram: a comprehensive public health response to major health issues for women. J Public
Health Management and Practice 1996;2:36-47.
2. Lantz PM, Macklem DJ. Hare M, Richardson LC, Sever LE. Orians CE. Follow-up and treatment
issues in the National Breast and Cervical Cancer Early Detection Program: results from a
multiple-site case study-final report. Baltimore: Battelle, Centers for Public Health Research
and Evaluation, 1997.
3. Miles MB, Huberman MA. Qualitative data analysis: an expanded sourcebook. 2nd ed. Thou-
sand Oaks, California: Sage, 1994.
4. Yin RK. Case study research: design and methods. Sage: Newbury Park, 1989.
Notice to Readers
World Health Day - April 7, 1998
"Invest in the Future: Support Safe Motherhood" is the theme in the United States
for World Health Day, April 7, 1998. In the United States, this day will focus on the
continued importance of maternal health and opportunities to improve this aspect of
women's health. Although the risk for women dying from pregnancy has decreased
substantially during the past 50 years, the maternal mortality ratio for the nation has
not decreased since 1982 (1). Approximately 50% of pregnancy-related deaths remain
preventable (2), and the extent of morbidity associated with pregnancy is often unrec-
ognized.
Safe motherhood begins before pregnancy with healthy lifestyles that include
good nutrition, physical activity, preconception care, and avoidance of harmful sub-
stances. Safe motherhood continues with planned pregnancies; early, quality prenatal
care; knowledge of warning signs of problems; and the delivery of a healthy, full-term
baby with the minimum of necessary interventions. Postpartum support for women
and their families in a positive, nurturing environment also is important.
In 1998, in the United States, women can plan, carry, and deliver a pregnancy more
safely than in the past. However, additional efforts need to be taken to make safe
motherhood a reality for all women. Improved public health surveillance, prevention
research, and prevention programs are needed to continue improving the health of
women before, during, and after pregnancy and delivery. Examples include new sur-
veillance methods to monitor and understand pregnancy complications; prevention
research on the essential content of prenatal care; and prevention programs to ensure
the adequate intake of folic acid by women of reproductive age to prevent neural tube
defects (3).
The World Health Day Advisory Committee of the American Association for World
Health coordinates World Health Day activities in the United States. Additional infor-
mation about special events and resource materials about World Health Day 1998 are
available from the American Association for World Health, 1825 K Street, N.W., Suite
1208, Washington, DC 20006; e-mail: [email protected]; or from the World-Wide
Web site: http://www.aawhworldhealth.org.
Mammography or Mammography Referral
sliding scale
200% FPL
250% FPL
other
Florida
Alabama
Alaska
Mississippi (150% FPL)
Kentucky
Arizona
CNMI
Nebraska
(up to 250% FPL)
(no information)
Arkansas
Delaware
New Mexico (185% FPL)
California
D.C.
Colorado
Hawaii
Connecticut
indiana
Georgia
Maryland
Idaho
Massachusetts
Illinois
Michigan
Iowa
Minnesota
Kansas
New Jersey
Louisiana
New York
Maine
Oregon
Missouri
Pennsylvania
Montana
Rhode Island
Nevada
South Carolina
New Hampshire
Utah
North Carolina
North Dakota
Ohio
Oklahoma
Repub. of Palau
South Dakota
Tennessee
Texas
Vermont
Virgin Islands
Virginia
Washington
West Virginia
Wisconsin
Wyoming
Vol. 25 No. 29
THE
CANCER
July 23, 1999
LETTER
INTERACTIVE
Copyright 1999 The Cancer Letter Inc.
All rights reserved.
Price $275 Per Year
PO Box 9905 Washington DC 20016 Telephone 202-362-1809
Hearing Probes CDC On Cancer Treatment
For Working Poor In Screening Program
In Congress:
Welcome to Oncopolitical Theater. In this episode, the players gather
House Subcommittee
in a hearing room of Rayburn House Office Building to discuss a bill that
Postpones FY2000
aims to correct a paradox in the U.S. health care system:
Markup; Porter Seeks
The Centers for Disease Control and Prevention pays for breast
8% Increase For NIH
and cervical cancer screening of low-income women. However, if cancers
are found, women who have no insurance and don't qualify for Medicaid
Page 4
are not assured treatment.
Legislation pending in the House and Senate seeks to give additional
In The States:
money to state-run Medicaid programs to cover the care for these women.
Michigan To Allocate
(Continued to page 2)
$50 Million Annually
To Life Sciences
In Brief:
Page 5
Pazdur To Direct FDA Oncology Division;
Ganz Awarded ACS Clinical Professorship
Regulatory Agencies:
RICHARD PAZDUR has been appointed director of the FDA
Health Warnings
Division of Oncology Products, effective Sept. 26. Pazdur has been a
Sought On Cigars
faculty member at the University of Texas M.D. Anderson Cancer Center
Page 5
for almost 12 years, most recently as professor of medicine in the Division
of Medicine and director of the division's educational programs. Pazdur
is board certified in internal medicine and oncology. He served for five
NCI Programs:
years as the Associate Director of the Clinical Trials Administration at
Hughes Institute Official
M.D. Anderson, has been principal investigator on numerous trials, and
To Head Cancer Biology
has been a consultant to FDA. Pazdur received a B.A. from Northwestern
Page 6
University and an M.D. from Loyola Stritch School of Medicine. He
trained in internal medicine at Loyola University. and in oncology at Rush
Funding Opportunities:
Presbyterian-St. Luke's Medical Center. with hematology/oncology training
Career Development
at University of Chicago Medical Center. Pazdur succeeds Robert Delap,
Award In Leukemia
who directed the oncology division from 1995 to 1998. Delap was promoted
Page 7
to deputy director in the agency's Office of Drug Evaluation V last spring
(The Cancer Letter, May 29, 1998). Robert Justice, deputy director
of the division, has served as acting division director since Delap's
Obituary:
promotion. Julie Beitz, medical team leader, has served as acting deputy
Ernst Wynder, 77,
director. In the division director's position, Pazdur will report to Robert
Linked Smoking, Cancer
Temple, director of the Office of Drug Evaluation I, and Rachel
Page 8
Behrman. deputy director of ODEI.
PATRICIA GANZ, director of
cancer prevention and control research at the Jonsson Cancer Center at
University of California, Los Angeles, was awarded an American Cancer
Society Clinical Research Professorship. Ganz conducts research on
(Continued to page 8)
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Waxman's Lament: "So, What
Subcommittee on Health and Environment of the
House Committee on Commerce.
Are We Arguing About?"
Do the women who initiated treatment
(Continued from page 1)
complete it? Is the treatment delayed while health
"This is not a large bill," said Rep. Anna Eshoo
officials scramble to provide care? Is the care
(D-CA), a co-sponsor of the bill (H.R. 1070) at a
appropriate?
hearing July 21. "This is not a bill that's directed
"We know that 92 percent have initiated
toward curing breast and cervical cancer. It doesn't
treatment; that's all we know," said Lee, responding
make a gigantic promise to people across the country.
to a question from Rep. Michael Bilirakis (R-FL),
I do think that within that context, we need to develop
chairman of the subcommittee and a supporter of the
the political will to get this done."
bill. "We don't know if it's a full course, [but] they
Not so fast! The traditions of oncopolitics require
have initiated treatment."
that before anything gets done, all players engage in
As Bilirakis persisted, Lee responded with a
ferocious wrangling over turf and data.
something of primer in elementary statistics and data
The first step is to find a brave soul willing to
collection:
deny that the problem exists-or at least to obfuscate
"We have information on every woman's
its existence:
diagnosis. Date of diagnosis. Date when treatment
"The most current program data indicate that
initiated. The median is eight days, and there are
92 percent of the women diagnosed with breast or
women in our data set whose treatment was initiated
cervical cancer have initiated treatment," said Nancy
over a year later. They are what we call in statistics,
Lee, director of the CDC Division of Cancer
sort of, the end of the curve."
Prevention and Control, testifying before the
"The median-half of the women-receive their
subcommittee.
treatment initiation within eight days. That's what
"The remaining 8 percent refused the treatment,
'median' means. But there are women who are very
have not yet initiated it, or are lost to follow-up," she
far out. There aren't many of them, or the median
said. "For women diagnosed with breast cancer, data
wouldn't be eight."
show a median of eight days between the cancer
BILIRAKIS: "Well, why are they far out?"
diagnosis and initiation of the treatment."
LEE: "For a whole variety of reasons, and we
This seemingly neutral bureaucratic statement
don't have the information in our data set as to why
proved to be a gold mine for members of the
they
are far out I do have a plane to catch to San
Diego."
Member, Newsletter
BILIRAKIS: "At what time?"
THE
CANCER
Publishers Association
LEE: "At three-something. And I have a
LETTER
World Wide Web http://
conference call before then."
www.cancerietter.com
BILIRAKIS: "We have to vacate this room
Editor & Publisher: Kirsten Boyd Goldberg
before two 'clock."
Editor: Paul Goldberg
LEE: "Well, everybody is going to eat lunch, too;
right?"
The time was just shy of 11 a.m., and Lee's
Editorial: 202-362-1809 Fax: 202-362-1681
ordeal was to continue for nearly another hour.
PO Box 9905, Washington DC 20016
The committee's lack of sympathy for CDC
E-mail: [email protected] or [email protected]
could be attributed to heavy lobbying by the National
Customer Service: 800-513-7042
Breast Cancer Coalition, a Washington-based patient
PO Box 40724, Nashville TN 37204-0724
advocacy group that made the CDC bill its top
legislative priority. In the Senate, the bill is estimated
Subscription $275 per year worldwide. ISSN 0096-3917. Published
to cost about $315 million over five years. The
48 times a year by The Cancer Letter Inc. Other than "fair use" as
specified by U.S. copyright law, none of the content of this
measure has not been scored in the House.
publication may be reproduced, stored in a retrieval system. or
This is the coalition's third attempt in as many
transmitted in any form (electronic, mechanical, photocopying.
years to push through the legislation. The measure
facsimile, or otherwise) without prior written permission of the
publisher. Violators risk criminal penalties and $100,000 damages.
has 263 co-sponsors in the House and 41 in the
Founded Dec. 21, 1973 by Jerry D. Boyd
Senate. On the Health and the Environment
The Cancer Letter
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Page 2
July 23, 1999
Photocopying Guidelines
Subcommittee, the bill has the support of 25 of the 30
Proponents VS. The "Undecided"
members.
The debates at the hearing were marked by a
Facing a barrage of questions from the panel,
striking absence of opponents of the measure.
Lee acknowledged that the necessity to line up care
Instead, proponents of the measure crossed swords
stresses the screening program.
with the undecided.
The program screens only 12 to 15 percent of
The latter camp includes the Administration and
the eligible population, which means that about 11
the Susan G. Komen Breast Cancer Foundation.
million women don't take advantage of breast and
"The only information I have from the
cervical screening, Lee said.
Administration is what the CDC testified to this
"Although states are currently meeting their
morning," NBCC president Fran Visco said at the
commitment to help women access treatment,
hearing. Visco said the coalition is seeking White
programs have told us of concerns regarding their
House endorsement of the measure. "We have had
ability to expand screening services to more women,
discussions with them, but we don't have an answer,"
because the systems for obtaining care and treatment
she said. "If the Administration refuses to endorse
are becoming overburdened," Lee said at the hearing.
this bill, NBCC will take it to task. They will hear
"As long as the numbers of cancers diagnosed
from members of NBCC."
through the program remain at their current level, the
The position described by the Komen
burden should not be too great." she said. "However,
Foundation required textual analysis.
increased screening, which is our goal, is accompanied
"Contrary to some accounts we have heard, the
by increased numbers of cancers diagnosed, and
Komen Foundation is not opposed to this legislation,"
many physicians who contract with programs are
Susan Braun, president and CEO of the Dallas-based
concerned about bringing more uninsured patients into
group, said in her written testimony. "We are
their care."
concerned, however, that any treatment initiative
This statement, too, proved to be a gold mine
provides a comprehensive and effective solution and
for the panel:
reaches those most in need of assistance."
"The fact of the matter is that only 15 percent
This claim of neutrality notwithstanding, Rep.
of eligible women are getting screened," said Rep.
Rick Lazio (R-NY), the original sponsor of the bill,
Henry Waxman (D-CA), a supporter of the bill.
said his reading of Braun's testimony points to
"Maybe it's because they don't have assurance that
opposition to the measure.
they would have treatment available; and maybe it's
"I am, quite frankly, disappointed in the
because a lot of resources that could be used for
testimony of the Komen Foundation," Lazio said. "At
screening have been diverted to try to [find] care.
my request, my staff reached out to them months
Are those factors important?"
ago to discuss this legislation and any concerns they
LEE: "I think the main factor is the level of our
may have about the bill. Despite this invitation, they
current resources [$158 million during the current
did not bring any concerns to me or my staff, until
fiscal year] that we have to give out to states don't
yesterday, when I read their testimony. Please, don't
allow more women to get screened."
get me wrong, I am a strong supporter of the Race
WAXMAN: "What percentage of the money
for the Cure, and enjoy working closely with Priscilla
has to be used to seek out treatment?"
and Sen. [Connie] Mack [(R-FL)]. But I wanted to
LEE: "We have never quantified that. I can tell
register my disappointment over the lack of Komen
you that additional funds we have allocated for case
Foundation's response to my request months ago."
management will augment some case management
Eshoo, too, said she was having difficulty
funds that are there."
interpreting Braun's testimony. "I have a difficult time
WAXMAN: "[Finding] treatment services
connecting the dots," she said at the hearing.
diverts resources from the program."
Indeed, a reading of the Komen testimony
LEE: "That's true. We have not quantified what
submitted for the record is more consistent with
proportion; how much that is, though."
opposition than no position on the part of the
WAXMAN: "And the lack of treatment services
foundation:
negatively affects the recruitment."
-Komen advocates framing the problem
LEE: "True."
beyond the boundaries of the CDC screening
WAXMAN: "So what are we arguing about?"
program. "Insured women who have lost their
Click Here for
The Cancer Letter
Photocopying Guidelines
Vol. 25 No. 29
Page 3
coverage or have reached a lifetime maximum,
hearing. "I know one woman who was diagnosed;
particularly those being treated for a recurrence of
she passed away the very next day after she found
their breast cancer can be in need," Braun said in
out she qualified for treatment. I know women who
her submitted remarks.
have used a balloon with water as a prosthesis.
-"Need" can be defined as a need for bone
"I know that I loaned many women some of my
marrow transplantation and other experimental
medication. It costs hundreds of dollars, and they
procedures. "Women with healthcare coverage, but
couldn't afford to buy it. So we share."
with a policy that excludes some forms of treatment
Physicians, too, have stories to contribute.
may also be in need," Braun said.
"The patients who come through the [CDC
-Braun said that a study by Komen concurs
program] are six months to a year out when they
with the findings by CDC that "treatment was initiated
come to see me," Stanley Klausner, a Long Island
for the vast majority of women" diagnosed through
breast cancer surgeon, said at the hearing.
the program. "While imperfect and needing further
"Sometimes the referral slip is yellow."
resources, the system has been providing treatment
for most women who need and want it," Braun said.
-Braun's testimony points to a preference for
Subcommittee Postpones
a private sector solution to the problem. "Eight states
Markup Of HHS Funding Bill
have legislated breast cancer treatment funds, and
The House Appropriations Subcommittee on
local programs also exist," Braun said. "Pro-bono care
Labor, HHS, Education and Related Agencies earlier
is provided in many communities. In the case of
this week postponed work on a fiscal year 2000
failure of these funding options, federal assistance
funding bill that would have included NIH
may be required."
appropriations.
-Medicaid may be an inappropriate program
The markup of the appropriations bill was to
for addressing the problem, Braun said, citing
have taken place July 21. There was no indication
variability in state Medicaid benefits. "Medicaid
when legislators planned to take up the bill.
participation is optional in the proposed bill," she said.
Subcommittee Chairman John Porter (R-IL) has
"States with limited funds in their Medicaid programs
said that drafting a bill would be pointless because
may be reluctant to cover care for people who would
the budget allocation for the subcommittee is $11
otherwise be ineligible."
billion below last year's appropriation (The Cancer
Unlike Braun, NBCC's Visco said the problem
Letter, July 9).
can be framed narrowly and solved through Medicaid.
Dave Kohn, a spokesman for Porter, said the
"We are not asking you to put every woman
subcommittee was planning to draft a bill that would
who doesn't have insurance on Medicaid," Visco said
have funded the departments at the same level as
at the hearing. "We are asking you to enact legislation
the current fiscal year by obtaining offsets for
that completes an existing program. We are asking
spending. Thus, the bill would not have exceeded the
that women diagnosed through the CDC program be
caps put in place by the Balanced Budget Act. "The
made Medicaid-eligible at the same rate that they
offsets have not materialized," Kohn said to The
have to be eligible to get into the program. If they
Cancer Letter. "We are in a hold pattern waiting to
are eligible for screening. they should be eligible for
see if the offsets can be obtained, and if not, funding
Medicaid treatment."
decisions would be made in the fall."
If the screening bill is signed into law, NBCC
The appropriation for NIH would have been
will have to mobilize its grassroots constituencies to
about an 8 percent increase over the Institutes'
force state legislatures to take part in the Medicaid
current budget, or about $16.9 billion, Kohn said. "Mr.
program. While CDC admits to having no data beyond
Porter still intends to shepherd through an increase
"initiation" of treatment, NBCC has put together a
for NIH that would be somewhere in the 8 to 9 percent
horrifying armamentarium of anecdotal evidence.
range," he said. "He has been clear in saying it would
These include the testimony of Carolyn Tapp.
be absolutely unacceptable to go backwards. We need
president of Women of Color, a Los Angeles-based
to increase resources for this type of research. He's
support group of about 120 women.
going to keep fighting for it."
"Some of the women I know took six months to
No action has been taken on NIH appropriations
actually start their treatment," Tapp said at the
in the Senate.
The Cancer Letter
Click Here for
Page 4
July 23, 1999
Photocopying Guidelines
THE BREAST AND CERVICAL CANCER TREATMENT ACT
The NBCCEDP
In 1990. Congress enacted the National Breast and Cervical Cancer Early Detection
Program (NBCCEDP) into law (P.L. 101-354), enabling states to provide breast and
cervical cancer screening services to women with no other source of payment for such
services.
The program is administered by the Centers for Disease Control and Prevention
(CDC), and works in partnership with state and local health agencies and other community
partners to provide education, outreach. screening services, and follow-up care. NBCCEDP
serves older women. women with low income, uninsured or underinsured women, and
women of racial/ethnic minority groups who qualify.
Congress appropriated $159 million for FY 1999 for the NBCCEDP. The program is
now in all 50 states, the District of Columbia and 13 American Indian/Alaska Native
organizations: however not all state programs are fully functioning.
The Success of the Screening Program
Since the NBCCEDP's inception through March 1998 it has:
Provided mammography screening to 794,445 women aged 40 years and older:
Found 56,119 (7%) abnormal mammograms;
Diagnosed 4,137 cases of breast cancer: and
Of those diagnosed with breast cancer, 3,350 were under 65 years of age - and ineligible for
Medicare coverage.
Current Approaches to Providing Treatment
As enacted by Congress, the NBCCEDP provides funding only for screening services.
Recently CDC agreed to cover diagnostic services- services necessary to determine whether
or not a woman has breast cancer. However, there is still no federal funding to provide
treatment services to the 3,350 women under age 65, who have been screened and diagnosed
with breast cancer.
The current system for treatment is an ad hoc patchwork of providers, volunteers, and
local programs scrambling to find treatment dollars. Although health agencies at the
state and local levels and breast cancer advocates have found creative ways to help women
find treatment, these networks are overloaded and increasingly unreliable. Women are
forced to rely on charity care, donated services, and bake sales to pay for their treatment.
The lack of financial support for treatment is hurting the NBCCEDP. Time and effort
required to arrange for treatment services have begun to divert resources away from
screening activities. As a result fewer women are being screened-the program serves only
12% to 15% of age-eligible. uninsured women nationally.
A Long-term Solution: Covering Treatment Costs Through the Medicaid Program
The National Breast Cancer Coalition (NBCC) believes that women should not have to
hold bake sales to fund breast cancer treatment. NBCC believes it is irresponsible to
enact a federal program that promises to reduce the number of deaths from breast and
cervical cancer and not guarantee federal funding for treatment services to women who have
been screened and found to have breast or cervical cancer.
Medicaid is the answer. Congress should allow states the option of providing women
diagnosed with breast or cervical cancer through the NBCCEDP, Medicaid coverage for their
disease.
There is a precedent for covering participants in the NBCCEDP under Medicaid. In
1993. Congress created the Tuberculous Optional Benefit Program, making individuals who
are infected with tuberculosis eligible for Medicaid.
Summary of the Breast and Cervical Cancer Treatment Act
The bill would establish an optional State Medicaid benefit for coverage of certain women
who are screened and diagnosed with breast or cervical cancer under Title XV of the Public
Health Services Act's NBCCEDP.
To be eligible, women would have to satisfy the income and resource eligibility requirements
established under NBCCEDP; be under the age of 65; have been diagnosed with breast or
cervical cancer under the Title XV Program: and not otherwise have health insurance
coverage.
Women who qualify for NBCCEDP would be allowed presumptive eligibility for Medicaid
coverage for the duration of the treatment of their breast and cervical cancer.
States electing to provide breast and cervical cancer treatment as an optional benefit would
receive an enhanced match to encourage participation in establishing this benefit.
National Breast Cancer Coalition
March 18. 1999
The Breast and Cervical Cancer Treatment Act
H.R. 1070
Bill Summary
The bill would establish an optional State Medicaid benefit for coverage
of certain women who were screened and diagnosed with breast or
cervical cancer under title XV of the Public Health Services Act's
National Breast and Cervical Cancer Early Detection Program
(NBCCEDP).
To be eligible, women would have to satisfy the income and resource
eligibility requirements established under NBCCEDP; be under the age
of 65; have been diagnosed with breast or cervical cancer under the title
XV Program; and not otherwise have health insurance coverage.
Women who qualify for NBCCEDP would be allowed presumptive
eligibility for Medicaid coverage for the duration of the treatment of their
breast and cervical cancer.
States who elect to provide breast and cervical cancer treatment as an
optional benefit would receive an enhanced match to encourage
participation in establishing this benefit.
Page 1 of 5
HR 1070 IH
106th CONGRESS
1st Session
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.
IN THE HOUSE OF REPRESENTATIVES
March 11, 1999
Mr. LAZIO (for himself, Ms. ESHOO, Ms. ROS-LEHTINEN, Mrs. CAPPS, Mrs. MORELLA, Mrs.
KELLY, Mr. BROWN of Ohio, Mr. GEORGE MILLER of California, Mr. HORN, Mr. DIXON, Ms.
PELOSI, Mr. LATOURETTE, Mr. WAXMAN, Mr. SERRANO, Mr. GILMAN, Mr. MALONEY of
Connecticut, Mr. MEEHAN, Mr. WELDON of Pennsylvania, Mr. UNDERWOOD, Mr. SHOWS,
Mr. ABERCROMBIE, Mr. MCHUGH, Mr. ETHERIDGE, Mr. SANDERS, Mrs. CLAYTON, Mr.
WALSH, Mr. MCGOVERN, Mr. MCNULTY, Mr. FROST, Mr. NEY, Mr. OLVER, Ms.
MILLENDER-MCDONALD, Mr. CROWLEY, Mr. SUNUNU, Mr. CLEMENT, Mr. STARK, Ms.
CARSON, Mr. FOLEY, Mr. COYNE, Mr. LANTOS, Mr. INSLEE, Mrs. WILSON, Mr. SHERMAN,
Mr. BALDACCI, Mr. BOEHLERT, Mr. LUTHER, Mr. HINOJOSA, Mr. DEFAZIO, Mr. QUINN,
Mr. PRICE of North Carolina, Mr. RANGEL, Mr. WEYGAND, Mr. FORBES, Mr. MEEKS of New
York, Mr. NADLER, Mr. BARRETT of Wisconsin, Ms. WOOLSEY, Mr. KUCINICH, Mr. KING,
Ms. SLAUGHTER, Mrs. TAUSCHER, Mr. BILBRAY, Mr. THOMPSON of Mississippi, Mr.
HINCHEY, Mr. KLECZKA, Mr. PAYNE, Mr. WYNN, Mr. JEFFERSON, Mr. SMITH of New
Jersey, Mr. MASCARA, Mr. LOBIONDO, Mr. OBERSTAR, Mr. LEACH, Mr. RUSH, Mr.
MATSUI, Mr. DINGELL, Mrs. EMERSON, Mr. FILNER, Mrs. MYRICK, and Ms. LOFGREN)
introduced the following bill; which was referred to the Committee on Commerce
A BILL
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.
Be it enacted by the Senate and House of Representatives of the United States of America in
Congress assembled,
SECTION 1. OPTIONAL MEDICAID COVERAGE OF CERTAIN BREAST OR
CERVICAL CANCER PATIENTS.
(a) COVERAGE AS OPTIONAL CATEGORICALLY NEEDY GROUP-
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(1) IN GENERAL- Section 1902(a)(10)(A)(ii) of the Social Security Act (42 U.S.C.
1396a(a)(10)(A)(ii)) is amended--
(A) in subclause (XIII), by striking `or' at the end;
(B) in subclause (XIV), by adding `or' at the end; and
(C) by adding at the end the following:
`(XV) who are described in subsection (aa) (relating to certain breast
or cervical cancer patients);'.
(2) GROUP DESCRIBED- Section 1902 of the Social Security Act (42 U.S.C. 1396a) is
amended by adding at the end the following:
`(aa) Individuals described in this paragraph are individuals who--
`(1) are not described in subsection (a)(10)(A)(i);
`(2) have not attained age 65;
`(3) have been screened for breast and cervical cancer under the Centers for Disease
Control and Prevention breast and cervical cancer early detection program established
under title XV of the Public Health Service Act (42 U.S.C. 300k et seq.) in accordance
with the requirements of section 1504 of that Act (42 U.S.C. 300n) and need treatment
for breast or cervical cancer; and
'(4) are not otherwise covered under creditable coverage, as defined in section 2701(c) of
the Public Health Service Act (45 U.S.C. 300gg(c)).'.
(3) LIMITATION ON BENEFITS- Section 1902(a)(10) of the Social Security Act (42
U.S.C. 1396a(a)(10)) is amended in the matter following subparagraph (F)--
(A) by striking `and (XIII)' and inserting `(XIII)'; and
(B) by inserting and (XIV) the medical assistance made available to an
individual described in subsection (aa) who is eligible for medical assistance only
because of subparagraph (A)(10)(ii)(XV) shall be limited to medical assistance
provided during the period in which such an individual requires treatment for
breast or cervical cancer' before the semicolon.
(4) CONFORMING AMENDMENTS- Section 1905(a) of the Social Security Act (42
U.S.C. 1396d(a)) is amended in the matter preceding paragraph (1)--
(A) in clause (x), by striking `or' at the end;
(B) in clause (xi), by adding `or' at the end; and
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Page 3 of 5
(C) by inserting after clause (xi) the following:
`(xii) individuals described in section 1902(aa),'.
(b) PRESUMPTIVE ELIGIBILITY-
(1) IN GENERAL- Title XIX of the Social Security Act (42 U.S.C. 1396 et seq.) is
amended by inserting after section 1920A the following:
`PRESUMPTIVE ELIGIBILITY FOR CERTAIN BREAST
OR CERVICAL CANCER PATIENTS
`SEC. 1920B. (a) STATE OPTION- A State plan approved under section 1902 may provide for
making medical assistance available to an individual described in section 1902(aa) (relating to
certain breast or cervical cancer patients) during a presumptive eligibility period.
`(b) DEFINITIONS- For purposes of this section:
`(1) PRESUMPTIVE ELIGIBILITY PERIOD- The term presumptive eligibility period'
means, with respect to an individual described in subsection (a), the period that--
`(A) begins with the date on which a qualified entity determines, on the basis of
preliminary information, that the individual is described in section 1902(aa); and
`(B) ends with (and includes) the earlier of--
`(i) the day on which a determination is made with respect to the eligibility
of such individual for services under the State plan; or
`(ii) in the case of such an individual who does not file an application by the
last day of the month following the month during which the entity makes the
determination referred to in subparagraph (A), such last day.
`(2) QUALIFIED ENTITY-
`(A) IN GENERAL- Subject to subparagraph (B), the term `qualified entity' means
any entity that--
`(i) is eligible for payments under a State plan approved under this title; and
`(ii) is determined by the State agency to be capable of making
determinations of the type described in paragraph (1)(A).
`(B) REGULATIONS- The Secretary may issue regulations further limiting those
entities that may become qualified entities in order to prevent fraud and abuse and
for other reasons.
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`(C) RULE OF CONSTRUCTION- Nothing in this paragraph shall be construed
as preventing a State from limiting the classes of entities that may become
qualified entities, consistent with any limitations imposed under subparagraph (B).
`(c) ADMINISTRATION-
`(1) IN GENERAL- The State agency shall provide qualified entities with--
`(A) such forms as are necessary for an application to be made by an individual
described in subsection (a) for medical assistance under the State plan; and
`(B) information on how to assist such individuals in completing and filing such
forms.
(2) NOTIFICATION REQUIREMENTS- A qualified entity that determines under
subsection (b)(1)(A) that an individual described in subsection (a) is presumptively
eligible for medical assistance under a State plan shall--
`(A) notify the State agency of the determination within 5 working days after the
date on which determination is made; and
`(B) inform such individual at the time the determination is made that an
application for medical assistance under the State plan is required to be made by
not later than the last day of the month following the month during which the
determination is made.
`(3) APPLICATION FOR MEDICAL ASSISTANCE- In the case of an individual
described in subsection (a) who is determined by a qualified entity to be presumptively
eligible for medical assistance under a State plan, the individual shall apply for medical
assistance under such plan by not later than the last day of the month following the
month during which the determination is made.
`(d) PAYMENT- Notwithstanding any other provision of this title, medical assistance that--
`(1) is furnished to an individual described in subsection (a)--
`(A) during a presumptive eligibility period;
`(B) by a entity that is eligible for payments under the State plan; and
`(2) is included in the care and services covered by the State plan;
shall be treated as medical assistance provided by such plan for purposes of section 1903(a)(5)
(B).'.
(2) CONFORMING AMENDMENTS-
(A) Section 1902(a)(47) of the Social Security Act (42 U.S.C. 1396a(a)(47)) is
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amended by inserting before the semicolon at the end the following: `and provide
for making medical assistance available to individuals described in subsection (a)
of section 1920B during a presumptive eligibility period in accordance with such
section'.
(B) Section 1903(u)(1)(D)(v) of such Act (42 U.S.C. 1396b(u)(1)(D)(v)) is
amended--
(i) by striking `or for' and inserting for'; and
(ii) by inserting before the period the following: or for medical assistance
provided to an individual described in subsection (a) of section 1920B
during a presumptive eligibility period under such section'.
(c) ENHANCED MATCH- Section 1903(a)(5) of the Social Security Act (42 U.S.C. 1396b(a)
(5)) is amended--
(1) by striking `an' and inserting `(A) an';
(2) by adding `plus' after the semicolon; and
(3) by adding at the end the following:
`(B) an amount equal to 75 percent of the sums expended during such quarter which are
attributable to the offering, arranging, and furnishing (directly or on a contract basis) of
breast or cervical cancer-related treatment services; plus'.
(d) EFFECTIVE DATE- The amendments made by this section apply to medical assistance
furnished on or after October 1, 1999, without regard to whether final regulations to carry out
such amendments have been promulgated by such date.
END
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The Breast and Cervical Cancer Treatment Act of 1999
S. 662/H.R. 1070
Endorsing Organizations
National Breast Cancer Coalition
American Cancer Society
National Association of Public Hospitals & Health Systems
National Partnership for Women & Families
YWCA
National Women's Health Network
Oncology Nursing Society
Y-ME
Arm in Arm
Association of Women's Health, Obstetric, and Neonatal Nurses
Rhode Island Breast Cancer Coalition
Florida Breast Cancer Coalition
The Breast Cancer Coalition of Utah
Maine Breast Cancer Coalition
American Medical Women's Association
American Public Health Association
California Breast Cancer Organizations
Linda Creed Breast Cancer Foundation
Wisconsin Breast Cancer Coalition
Cancer Research Foundation of America
American Society for Therapeutic Radiology and Oncology
National Women's Law Center
TABLE 1
National Breast and Cervical Cancer Early Detection Program (NBCCEDP)
Initiation of Treatment for Wamen Diagnosed with In Situ or Invasive Breast Cancer
Minimum Data Elements' through March 31, 1997
11:46am
Total Number of
Total Number of
Number of
Number of Breas
NBCCEDP
Breast Cancers
Breast Cancers
Median Days
Cancers with
Funded
Diagnosed
with Complete
from Diagnosis to
Percent Initiated
Pending/Missing
Program Name
Mammograms
(InSitu/Invasive)
Information
Treatment Initiation
Treatment (N=)³
Information⁴
TOTAL for NBCCEDP
594,436
4409
4242
10
95.8 (4064)
167
(35 Programs Combined)3
From-CANCER SURVEILLANCE BRANCH
I The Minimum Data Elements (MDEs) are electronically submitted semi-annually (January 15 and July 15) to a data
management contractor, who analyzes the data and submits a data file to the CDC. For example, the data used for this report were
submitted on January 15, 1998 and included screening exams through September 30, 1997. The next data will be submitted on July
15, 1998 and will include screening exams through March 31, 1998. The interval of three and one-half months provides states time to
prepare the data submission and gather information that may be missing. Routinely an additional six month interval is provided for
completion of diagnostic follow-up and treatment information.
2
The total number of breast cancers diagnosed include some women referred to the NBCCEDP for diagnostic evaluation of a
non-NBCCEDP funded screening exam.
3 Women who did not initiate treatment either refused treatment, were lost to follow-up, or died.
4
Breast cancer cases have pending or missing information on one or more of the following variables: date of diagnosis; date of
treatment initiation; or status of treatment initiation.
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5 Programs include AK, AZ, AR, CA, CO, CT, FL, GA, IL, 1A, KS, LA, ME, MD, MA, MI, MN, MO, NE, NJ, NM, NY, NC,
OH, OK, OR, PA, RI, SC, TX, UT, VT, WA, WV, WI
5/5/98
TABLE 2
National Breast and Cervical Cancer Early Detection Program (NBCCEDP)
Initiation of Treatment for Women Diagnosed with In Situ or Invasive Breast Cancer
Minimum Data Elements through March 31, 1997
Program with ≥ 40 Cases of Breast Cancer
:46am
Total Number of
Total Number of
Number of Breast
Number of Breast
NBCCEDP
Breast Cancers
Cancers with
Median Days
Percent
Cancers with
Program
Funded
Diagnosed
Complete
from Diagnosis to
Initiated
Pending/Missing
Name
Mammograms
(InSitu/Invasive)
Information
Treatment Initiation
Treatment (N=)
Information
AR
5,652
54
52
10
96.1 (50)
2
From-CANCER SURVEILLANCE SURVE BRANCH
CA
50,767
489
478
11
93.1 (445)
11
CO
20,485
119
117
13
99.1 (116)
2
MD
35,788
314
305
11
96.7 (295)
9
MA
14,038
207
182
13
97.3 (177)
25
MI
58,473
435
424
0
94.3 (400)
11
MN
26,375
217
215
8
97.7 (210)
2
+7704884759
MO
24,041
143
140
8
96.4 (135)
3
NE
2,950
79
78
8
91.0 (71)
1
NM
47,613
244
244
18.5
95.9 (234)
0
NY
59,573
397
397
25
94.2 (374)
0
NC
42,191
274
269
11
94.0 (253)
5
OH
10,254
121
121
8
95.9 (116)
0
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PA
5,593
48
43
13
100 (43)
5
5/5/98
TABLE 2 (continued)
National Breast and Cervical Cancer Early Detection Program (NBCCEDP)
Mar-05-98
Initiation of Treatment for Women Diagnosed with In Situ or Invasive Breast Cancer
Minimum Data Elements through March 31, 1997
Program with ≥ 40 Cases of Breast Cancer
11:46am
Total Number of
Total Number of
Number of Breast
Number of Breast
NBCCEDP
Breast Cancers
Cancers with
Median Days
Percent
Cancers with
Program
Funded
Diagnosed
Complete
from Diagnosis to
Initiated
Pending/Missing
Name
Mammograms
(InSitu/Invasive)
Information
Treatment Initiation
Treatment (N=)
Information
SC
30,192
227
206
10
98.5 (203)
21
TX
71,662
526
514
4.5
97.9 (503)
12
From-CANCER SURVEILLANCE BRANCH
UT
5,918
43
41
0
100 (41)
2
WA
12,812
71
61
8
90.2 (55)
10
WV
32,063
214
198
7
99.5 (197)
16
WI
10,860
40
36
10.5
97.2 (35)
4
+7704884759
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5/5/98
TABLE 3
National Breast and Cervical Cancer Early Detection Program (NBCCEDP)
Initiation of Treatment for Women Diagnosed with In Situ or Invasive Breast Cancer
Minimum Date Elements through March 31, 1997
May-05-99 11:46am
Program with < 40 Cases of Breast Cancer
Program
Total Number of NBCCEDP
Total Number of Breast Cancers
Name
Funded Mammograms
Diagnosed (InSitu/Invasive)
AK
989
8
AZ
1,495
13
CT
1,302
8
From-CANCER SURVEILLANCE BRANCH
FL
1,535
14
GA
6,234
31
IL
1,102
6
IA
416
5
KS
785
7
LA
174
1
ME
872
3
+7704884759
IN
2,549
11
OK
1,328
15
OR
1,115
11
RI
1,269
7
VT
979
7
NOTE: Median days from diagnosis to treatment initiation and the proportion who have initiated treatment are not calculated because the total
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number of breast cancer cases are too small to produce statistically reliable information. However, those breast cancer cases are included in the
overall NBCCEDP measures reported in Table 1. These states are still in the start-up stage and have been screening for approximately two years
as of March 31, 1997.
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Article
Strategies for Follow-Up and
Treatment Services in State
Breast and Cervical Cancer
Screening Programs
Paula M. Lantz, PhD
Lisa C. Richardson, MD, MPH
Debra J. Macklem, MEd
Lisa R. Shugarman, BA
University of Michigan School or Public Health
Arm Arbor. Michigan
Donna B. Knutson, MSEd, CHES
Canters for Disease Control and Prevennon,
Division of Cancer Prevention and Control
Atlanta Ceorgia
Lowell E. Sever, PhD
Barrette Centers for Public Health Research and Evaluation
Searcle, Washington
This report describes strategies used to provide diagnostic follow-up and
treatment services to low-income women screened through the National
Breast and Cervical Cancer Early Detection Program.
he Breast and Cervical Cancer Mortality Prevention Act, enacted by
11
the U.S. Congress in August 1990 (Public Law 101-354) authorized
funds for a national screening program for breast and cervical cancer
for medically underserved women.¹ This program-the National
Breast and Cervical Cancer Early Detection Program or NBCCEDP-is admin-
istered by the Centers for Disease Control and Prevention (CDC). The goal of
this large public health initiative is to reduce the morbidity and mortality
associated with breast and cervical cancer in the United States.
The NBCCEDP is implemented through cooperative agreements with
qualifying health agencies that provide free or low-cost screening to uninsured
or underinsured low-income women, develop and disseminate public and
professional education strategies. establish qualiry assurance systems, engage
in surveillance and evaluation activities, and develop coalitions and partner-
ships.² To date, the health departments of all 50 states, the District of Columbia,
4 U.S. territories, and 15 American Indian and Alaska Native ribes or tribal
© 1999 by the Jacobs Institute
organizations have received support for comprehensive Breast and Cervical
of Women's Health
Pubtished by Hiservier Science inc
Cancer Early Detection Programs (BCCEDPs). The age and income eligibility
1049-3867/99/$20.00
requirements for screening services vary across the programs, but all programs
PII S1049-3867(98)00027-9
42 WOMENS HEALTH ISSUES VCL 9. NO. 1 JANUARY/FEBRUARY 1999
May-05-99
11:47am
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P.07/13
F-585
target high-priority groups, for example, older women, women in racial and
ethnic minority groups, women with disabilities, lesbians, and women who
live in rural or other hard-to-reach areas.
Through September 1997, more than 1.5 million free mammograms and
Papanicolaou smear tests were provided through the NBCCEDP.³ The pro-
gram also covers a number of follow-up diagnostic procedures, including
diagnostic mammography, breast ultrasound, surgical consultation, fine nee-
dle aspiration of the breast, and colposcopy Because or limited resources,
however, program funds have not been available to cover all of the diagnostic
tests that women may need for follow-up of abnormal screening results and to
reach a defininve diagnosis (including excisional breast biopsy. stereotactic
localizanon for breast biopsy, or needle core breast biopsy). In addinon, the
federal legislation prohibits the use or national program funds to pay for
treatment services for women diagnosed with cervical intraepithelial neoplasia
(CIN) or for any component of treatment for breast or cervical cancer,
including surgery, radiotherapy, chemotherapy, normonal therapy. and breast
Through September
Despire these restrictions in funding diagnostic and treatment services are
1997, more than 1.5
recognized as essential components of this screening iniriative Federal legis-
million free
lation requires that participating programs ensure that women with abnormal
screening results receive definitive diagnoses and that they have access to
mammograms and
timely and appropriate treatment services for CIN or cancer if needed,
Papanicolaou smear
regardless of their ability to pay. Participating health agencies are expected
tests were provided
to build collaborations and partnerships with hospitals and community-based
organizations to obtain access to and resources for diagnostic. treatment, and
through the NBCCEDP.
support services.²
Anecdoral information reported to CDC suggests that participating agen-
cies are indeed finding innovative and interesting ways to secure diagnostic
follow-up and treatment services for women in need², however, this aspect of
the NBCCEDP has not been assessed in depth or systemancally. Thus, we
underrook a three-part study TO document and investigare the strategies and
approaches that state BCCEDP, have implemented to secure diagnosne
follow-up and cancer treatment services for chents in the absence of federal
dollars for these activities: 1) a descriptive study of the general strategies and
activities regarding diagnostic and treatment services in 35 BCCEDPs; 2) an
in-depth case study of 7 of the 35 state programs5; and 3) documentation of
cancer treatment services received and the timing of these services by linking
information from 3 state BCCEDPs with dara from population-based tumor
registries. In this report, we present the results from the first study component
METHODS
All 35 state BCCEDPs that received federal funding for a comprehensive
screening program before October 1, 1996 (and thus had significant experience
dealing with clients in need of diagnostic follow-up and treatment services)
were selected for study.² Data were collected with the assistance of 18 CDC
program consultants, who are Adanta-based staff who provide rechnical
assistance to and serve as federal haisons with the state programs. A standard-
ized data collection form that consultants could self-adminisrer as part of their
general dunes was designed and pilot tested. The form was used to document
state-specific information on the organizational structure of the screening
program, mechanisms for notifying women of results, and strategies for
securing diagnostic and treatment services for clients in need. Written instruc-
tiens for completing the form and 3 3-hour training session were provided.
Consultants completed a form for each of their assigned states in the sample
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(ranging from 1 TO 3 states per consultant), using their knowledge of the State
program and available materials and documents. They also discussed specific
issues in their routine technical assistance calls with states if clarification from
the state program was needed. Completed forms (N = 35; 100% response rate)
were forwarded to University of Michigan research staff along with any
relevant written documents.
RESULTS
One way in which ail state programs work to ensure that needed follow-up
diagnostic tests and treatment services are received is bv tracking chenrs using
program surveillance dara. State programs have designed and implemented a
variety of management information systems to track women through the
processes of screening, diagnostic fullow-up, and treatment initiation. In
addinon, at the time of our data collection, most states had written guidelines
or protocols for screening providers for notifying women of screening results
States are required to
and for tracking women needing diagnostic services after an abnormal
report to CDC the date
screening result (Table 1). In addition, 89% of states had written guidelines for
that cancer treatment
ensuring that women receive defininve diagnosne follow-up sen ices, and 77%
had written guidelines for ensuring that women ininate treatment for breast or
was initiated for
cervical cancer or CIN. Similarly, most states had written guidelines or defined
breast or cervical cancer.
protocois for providers regarding appropriate clinical pathways for diagnostic
follow-up (S6% for breast diagnostics and 83% for cervical diagnosnes),
whereas fewer states had developed protocols for appropriate treatment
pathways (69% for breast cancer, 66% for cervical cancer, and 60°. for CIN).
States are required TO report to CDC the dare that cancer treatment was
ininared for women diagnosed with breast or cervical cancer Even those states
without written guidelines or protocols regarding how women should get
from an abnormal screening result to treatment have implemented surveillance
systems that include the treatment initiation date. Some state programs
document additional information about treatment For example. our results
suggest that 21 state programs (60%) were routinely documenting each client's
mitial course of cancer treatment, and of these programs, S (23%) were
documenting the content of treatment beyond the initial course Five state
programs (14%) were documenting how each client's cancer treatment was
funded, although none were collecting information on out-of-pocket expenses
for diagnostic or treatment services.
State-level resources used to fund or TO provide diagnosne and treatment
services 9 women in the absence of federal program dollars for these acnviries
are listed in Table 2 The more common strategies were appeals through the
state medical society for physicians to volunteer or donate procedures and
referral of clients to designated providers (such as state-funded cancer centers,
teaching hospitals. and public hospitals). Several states receive funding for
diagnostic and treatment services from their legislatures. This funding comes
from state appropriations provided through general public revenue or tobacco
excise tax revenue In some of these states, funds are provided exclusively for
women screened through the BCCEDP, in other states, the funds are available
to all citizens who meet state-established eligibility criteria for services. In some
states. the funds are restricted to paying for breast cancer services (primarily
for diagnostic rests).
A wide range of strategies and activities organized at the local level (ie,
county, city or individual clirucal facility) were being used to provide diag-
nosnc and treatment services to women in the absence of program dollars for
these activities (Table 3). The most common strategies used at the local level
include referrals to designated providers who have agreed to serve program
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Table 1. PREVALENCE OF WRITTEN GUIDELINES FOR NOTIFICATION, TRACKING. AND SERVICE
DELIVERY IN STATE BREAST AND CERVICAL CANCER EARLY DETECTION PROGRAMS
(N = 35)
Does the State Program Have Written Guidelines for
Yes
No
Notifying women of screening results?
Breast carcer screening results
32 (91%)
3 (9%)
Cervical cancer screening results
32 (91%)
3 (9%)
Breast cancer diagnostic test results
31 (89%)
4 (11%)
Cervical cancer diagnostic test results
SI (89%)
4 (11%)
Tracking women needing follow-up services?
Breast cancer diagnostic services
35 (100%)
0
Cervical cancer diagnosne services
34 (97%)
1 (3%)
Breast cancer treatment services
32 (91%)
3 (9%)
Cervical neoplasia treatment services
32 (91%)
3 (9%)
Cervical cancer treatment services
32 (91%)
3 (9%)
Ensuring women receive needed diagnostic services?
Breast cancer diagnostic services
31 (89%)
4 (11%)
Cervical cancer diagnostic services
31 (89%)
4 (11%)
Ensuring women initiate needed treatment?
Breast cancer treatment services
27 (77%)
8 (23%)
Cervical neoplasia treatment services
27 (77%)
8 (23%)
Cervical cancer treatment services
27 (77%)
8 (23%)
Defining appropriate paths for diagnosne follow-up and treatment?
Breast cancer diagnostic services
30 (86%)
5 (14%)
Cervical cancer diagnostic services
29 (83%)
6 (17%)
Breast cancer treatment Services
24 (69%)
11 (31%)
Cervical neoplasia treatment services
21 (60%)
14 (40%)
Cervical cancer treatment services
23 (66%)
12 (34%)
clients for free or at a reduced COST, assistance to clients in applying for
Medicaid, or referrals to other government-spansored insurance programs.
Another common strategy is the use of funds from local foundations, charitable
organizanons, or corporate sponsors.
Several different strategies that involve clinicians or providers (in hospi-
tals, clinics, community health centers, and local health departments) were
used to secure diagnostic and treatment services for program chents (Table 3).
Many providers donate services or provide other types of charity care, offer
services at a reduced fee, negotiate payment plans with clients, and write off
diagnosic and treatment services as bad debt. In half of the states, a formal or
informal system exists for rotating referrals for services not covered by
program funds among providers in one or more locales.
More than to different strategies or activities were named as being used to
secure diagnostic and treatment services for BCCEDP clients in need. These
strategies, in the order of frequency with which they were named, were: 1)
reduced fee-for-service or a sliding-fee scale for services. 2) negoriated pay-
ment plans between providers and clients; 3) in-kind chantable contributions
of providers (including hospital indigent care programs); 4) assistance in
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Table 2. USE OF STATE-LEVEL STRATEGIES TO PROVIDE DIAGNOSTIC AND TREATMENT SERVICES IN
THE NATIONAL BREAST AND CERVICAL CANCER EARLY DETECTION PROGRAM (N = 35)
Number of State Programs Using Strategy to Provide.
Diagnostic
Treatment
Strategies Organized and/or Administered at State Lenel
Services Only
Services Only
Bath Services
Not Used
Organization of charity care/in-kind donation
3 (9%)
0
15 (43%)
17 (18%)
of services at state level
Referral of clients to state-funded cancer center
0
0
5 (14%)
30 (86%)
Referral of chents to other designared providers -
1 (3%)
1 (3%)
13 (37%)
20 (57%)
who have agreed to serve program
Client assistance in applying for Medicaid or
0
0
10 (29%)
25 (71%)
other state program
Indian Health Service funds
0
0
8 (23%)
27 (77%)
Race for the Cure funds
6 (17%)
1 (3%)
1 (3%)
27 (77%)
Other Komen Foundation funds
3 (9%)
0
0
32 (91%)
Blue Cross Foundation funds
0
1 (3%)
0
34 (97%)
Ceneral public revenue in fund
6 (17%)
0
4 (11%)
25 (71%)
Tobacco excise tax revenue in fund
1 (3%)
1 (3%)
1 (3%)
32 (91%)
applying to Medicaid or a state-sponsored insurance program; 5) referral to a
designated cancer center or a publicly funded medical facility providing
indigent care; 6) use of state appropriations for diagnostic or treatment
services, or both: and 7) use of funds raised through a Susan G Komen Breast
Cancer Foundation Race for the Cure.
State programs collaborate with a variety of public and private agencies
and organizations in their attempts to bring diagnostic and treatment services
to BCCEDP chents. Collaboranng agencies include state health and human
service agencies, county and city health departments, the Indian Health
Service, the American Cancer Society, the National Cancer Institute's Cancer
Information Service, state and local medical societies, state hospital associa-
Table 3. USE OF LOCAL-LEVEL STRATEGIES TO PROVIDE DIAGNOSTIC AND TREATMENT SERVICES
IN THE NATIONAL BREAST AND CERVICAL CANCER EARLY DETECTION PROGRAM (N = 35)
Number of State Programs Using Strategy to Provide
Diagnosta
Treatment
Serategies Organized and/or Administered at Local Level
Services Only
Services Only
Both Services
Not Used
Referral of clients 9 designated providers
0
0
25 (71%)
10 (29%)
Client assistance in applying for Medicaid or
2 (6%)
1 (3%)
22 (63%)
10 (29%)
other state program
Race far the Cure funds
3 (9%)
0
6 (17%)
26 (74%)
Other private foundation funds
3 (9%)
0
11 (31%)
21 (60%)
Assistance from local American Cancer Society
1 (3%)
0
5 (14%)
29 (83%)
County money in fund
0
0
3 (9%)
32 (91%)
-Donation of services or charity care (including
1 (3%)
1 (3%)
32 (91%)
1 (3%)
indigent care programs)
Reduced fee-for-service
2 (6%)
0
27 (77%)
6 (17%)
Negotiated payment plan
0
1 (3%)
31 (89%)
3 (9%)
Services written off as bad debt
0
0
25 (71%)
10 (29%)
System for rotating referrals
1
0
16 (46%)
18 (51%)
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nons, private foundations. local corporations, churches and synagogues,
YWCAS, and community health centers.
In Maryland, a centralized response organized at the state level was
implemented to ensure that women screened for breast and servical cancer
receive all needed diagnostic and treatment services. In July 1992, the Mary-
land legislature allocated funds for the Maryland Breast and Cervical Cancer
Diagnosis and Treatment Program. This program. funded through general
public revenue and robacco tax revenue, provides a means by which women
can receive free breast and cervical cancer diagnostic tests and treatment
services. Providers under contract with this fund offer a wide range of
diagnostic and treatment procedures for women meeting specific eligibility
crireria. This state-funded program is not restricted to women screened
through the BCCEDP. although the eligibility criteria are sumilar
By contrast, the Minnesota BCCEDP does not have access to state funds to
supplement the federal program. Rather. the Minnesota program has devel-
oped a relationship with the Susan G. Komen Breast Cancer Foundation Race
for the Cure in the Twin Cities. The majority of the money raised in this annual
Multiple strategies are
walking/running fundraising event is allocated to the Minnesora Breast and
being used to ensure
Cervical Cancer Control Program to pay for breast ultrasounds and outpatient
that program clients
breast biopsies for women throughout the state This strategy involves a
receive essential
parmership between the state health department and a private foundation in
an attempt to secure breast diagnostic tests for program clients This strategy.
diagnostic and treatment
however, does not provide resources for the treatment of breast cancer, cervical
services.
cancer, or CIN, and, in fact, only half of the breast biopsies received by
program clients are paid for through Race for the Cure funds U Korn, personal
communication, June 1997). To secure addinonal crucial services for program
clients, the Minnesota BCCEDP also refers women to Medicaid or Minnesota-
Care (a state-sponsored health insurance program for low-income people) and
negotiates payment plans, reduced fee-for-service, or charity care for individ-
ual cases.
DISCUSSION
Through the NBCCEDP. low-income uninsured and underinsured women
receive important clinical prevenuve services: breast and cervical cancer
screening. These women, however, are among those with the fewest resources
8 pay for diagnostic follow-up tests or for treatment services for a subsequent
diagnosis of CIN, cervical cancer. or breast cancer. The NBCCEDP's gual a
reduce morbidity and mortality from breast and cervical cancer cannot be
realized unless women with abnormal screening results receive a definitive
diagnosis and receive prompt and efficacious therapy for cancer or precancer-
ous lesions.
The NBCCEDP does not cover all the diagnostic services that clients may
need, and It covers no treatment costs at all. Our study of 35 state screening
programs shows that muluple strategies are being used to ensure that program
clients receive essential diagnostic and treatment services. Some strategies use
centralized funds administered at the state level (eg. state funds appropriated
by the legislarure or funds raised through parmerships with private founda-
tions). Other strategies are decentralized and informal, reflecting parmerships
and collaborative arrangements that have been worked out at the level of a
community or a within a single health care institution. There is great reliance
on providers of diagnostic and treatment services B offer NBCCEDP chents
different types of charity care, reduced fets, or long-term payment plans. Many
of the strategies or approaches on which state programs rely to provide
diagnostic and treatment services involve some charge (either full fee or a
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reduced fee) to the client. The number of BCCEDP clients being charged for
follow-up tests and treatment services, the amount of these charges, and the
degree to which financial barriers contribute to time delays or refusals for care
are not known.
Approaches providing diagnostic and treatment services vary greatly
across states. This IS not surprising. given the different sociopolitical environ-
ments of the states and the different ways in which they have organized or
structured their BCCEDPs.³.⁹ Strategies and tactics also vary within states
Communities and individual facilities within a state have access to different
resources, and health service delivery systems vary across regions of a state.
Thus, local programs within the same state have devised different means of
providing diagnostic and treatment services to their clients.
At the time of this study, some state programs did not have any written
guidelines or protocols for clinical providers for tracking clients or for ensuring
the initiation of follow-up or treatment services. The NBCCEDP-sponsored
programs are required to have an acrive medical advisory committee or
consultant that approves clinical protocals/guidelines and provides oversight
to the quality of the services being delivered. The CDC recommends that
NBCCEDP-sponsored programs use clinical practice guidelines established by
nationally recognized organizations as a basis for developing chrical protocols
for their programs. Some state programs were in the process of designing or
approving such guidelines at the time of our study.
The results of this study are limited in several ways. We do not have
detailed information regarding the history behind the development of certain
policies or the strengths and weaknesses of various strategies or tacties. We
also do not have information regarding the effort or resources required to
implement various strategies or the efficacy or specific approaches. In addition,
while we have identified a wide variety of activities that are underway to
provide women with diagnosne follow-up and treatment services, these results
do not tell us if women are actually receiving the services they need in a umely
fashion. Yes the results of this study can answer important questions about the
NBCCEDP and the need for its participating health agencies to obtain
resources for some diagnostic tests and for all treatment services. This research
represents the first systematic look at how state health agencies are working to
provide NBCCEDP clients the diagnostic and treatment services that the
program does not cover. In addition, this study sheds light on how a large
federal program has been implemented at the state and local levels and how
funding restrictions in the federal program have been addressed in innovative
ways by collaborating institutions and organizations. Myriad health agencies
and organizations sponsor free or reduced-cost screening programs for a
diseases other than breast or cervical cancer withour offering coverage for
definitive diagnostic and treatment services. The strategies and approaches of
the 35 state BCCEDPs described here may be useful and relevant to those
implementing other types of disease screening programs
ACKNOWLEDGMENTS
Lisa C. Richardson, MD, MPH, is now with the CDC. This project was funded
by the CDC Division of Cancer Prevention and Control. and was approved by
the University of Michigan Health Sciences Human Subjects Review Commit-
tee. Rosemarie Henson, MSSW. MPH, Stephen Wyan. DDM, MPH, Nancy C
Lee, MD. Diane Duner, MPA. Jane Schulman, PhD, Martha Hare, PhD, Carlyn
Orians, MA, and Madelaine Pfahler contributed to the design and implemen-
tation of the project. In addition, the authors thank the CDC Program
Consultants for their ccoperation with and effort on this project
48
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REFERENCES
1. The Breast and Cervical Cancer Mortality Prevention Act of 1990, 42 USC 201 et seq
1501-1509 (1990).
2. Henson RM. Wyart SW, Lee NC. The National Breast and Cervical Cancer Early
Detection Program: a comprehensive public health response to two major health
issues for women J Public Health Management Prace 1996,2:36-47.
3. U.S. Department of Health and Human Services. The National Breast and Cervical
Cancer Early Detection Program: At-A-Clance 1998.
+ Reynolds T. States begin CDC-sponsored breast and cervical cancer screening
J Nad Cancer Inst 1992;84:7-9.
5. Lantz PM, Sever LE. et al. Strategies for providing follow-up and treament services
in the national breast and cervical cancer early detection program-United States,
1997. MMRW 1998;47 215-8.
6. Caplan LS, Helzlsouer KJ Delay in breast cancer. a review of the literature. Public
Health Rev 1993;20.187-214.
7. US. Department of Health and Human Services. The national strategic plan for the
early derection and control of breast and cervical cancers. Arlanta: Centers for
Disease Control and Prevennon, 1994.
8 Maralir M. Orlaff TM. Desonia R Transforming state health agencies to meet
current and future challenges Washington (DC): National Covernor's Association,
1997
9. Studnick I. Steverson B. Blais HN. Goley E, Richards TB, Thorton JN. Analyzing
organizational practices in local health organizations. Public Health Rep 1994;109:
485-90.
LANTZ ET AL. STRATEGIES IN CANCER SCREENING PROCRAMS 49
During the House Commerce Subcommittee on Health and Environment Hearing on
H.R. 1070 in July, the tremendous need to enact this bill was illustrated through
compelling testimony. Following are a few highlights:
Mr. Biliraks:
"..I am an early cosponsor of this 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 the
screening is concerned. So, something has to be done, I think we would all agree, for
improvement there, which would take additional funds.
Dr. Stanley Klausner:
"Yes, the issue is really the fact that it is very difficult to do charity work, pro bono
work, work at the 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
Ms. Carolyn Tapp
(President, Women of Color Breast Cancer Survivors Support Project:
"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 I have known women who have had t 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
Mr. Lazio:
" What would the impact be in terms of the breadth of service is you had a Medicaid
option, if there was a Medicaid reimbursement in our backyard?"
Dr. Klausner:
"
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, $6 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 fellow I am asking to do something for free,
and he is filling out reams of paper just to get medication 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."
Ms. Fran Visco
(President, National Breast Cancer Coalition:
"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."
Mr. Lazio:
"
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."
Ms. Nancy Lee:
(Director, Division of Cancer Prevention and Control, CDC):
"As 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 we are able to do."
Dr. Klausner:
"
Even more disturbing is my gradual awareness that the working poor are afraid to
elect breast conserving surgery. They are so terrified of their medical bills that their
medical judgment is biased. Take for example a working mother supporting two children
and not qualified for Mediciad. Even if her breast cancer is amendable 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."
After the House Hearing on H.R. 1070, a hearing was held in the Senate Finance
Subcommittee on Health (on the companion legislation - S. 662). Following are a few
highlights:
Ms. Barbara Matula:
(Director, Health Care Programs, North Carolina Medical Society Foundation
Former Chairperson, National Association State Medicaid Directors
Raleigh, North Carolina):
"Imagine now that you come home tonight and you learn that someone in your family has
a potential diagnosis of breast or cervical cancer. Your only concern is getting the best
care. You have a sense of relief that she has regular care, regular exams. So you are
hoping that it was caught early. And all you look for is full recovery
But if you are that same woman and your income is below 200 percent of poverty, which
is so very little - if you are a single person that is $16,480 a year, if you are married and
it is $22,000 for the couple. That is very low, but twice what Medicaid eligibility is. You
have run out of funds and you are left to your own devices
"
This is unconscionable. For all the little administrative wrinkles in Medicaid eligibility, I
hope this bill will pass."
Senator Chafee:
Ms. Matula and the others Some have suggested that CDC provide the treatment as well
as the screening, in other words forgo Medicaid. What would you say to that?
Ms. Matula:
"If it was the last resort, I would say do it, of course."
Senator Chafee:
"Do not put it in the last resort category. Move it up. Let us say you were
queen Would you have a CDC treatment program?"
Ms. Matula:
"
The only reason I would not do it is that, and this was after talking to a fellow with
many years experience with CDC programs. they have no experience as third party
administrators. Their job is to do public education and outreach which they do very very
well. To duplicate what an existing program is already doing
Senator Chafee:
"Meaning Medicaid?"
Ms. Matula:
"Meaning Medicaid. Learning how to reimburse physicians and hospitals and
pharmacies and clinics and doing it in a quick turnaround time so that they will continue
to participate would be a waste of our time and resources to duplicate this in another
agency."
Ms. Barbara Flett:
Director
Women's Health Partnership of Suffolk County
"Lack of guaranteed treatment means there is no way to tell how long a woman will have
to wait to get the care following a diagnosis of breast or cervical cancer. Moreover, once
a woman receives treatment, she often must spend her time arguing with doctors and
hospitals and sometimes creditors over her bills rather than focusing on recovering from
her devastating illness."
Senator Chafee:
"
Would Medicaid have problems interfacing with another program's eligibility
standards? Will Medicaid be able to easily enroll and cover those who are found eligible
in screening done under the CDC program?"
Ms. Matula:
"If you would have asked me this 15 years ago, I would say we do not even speak to our
public health agencies, but in that interim, we have learned how to do it with the pregnant
women coverage to reduce infant mortality where the determination of pregnancy
services as the presumptive eligibility, where the income tests at that time were easily
twice as high as we had for the women on welfare who were the only other women. I do
not that this would be a problem. The State Medicaid agency and the public health
agency could have a cooperative agreement that would spell out those 200 percent of
eligibility as a trigger. And it could be as smooth as silk"
NBCC
NATIONAL BREAST CANCER COALITION
grassroots advocacy in action
Testimony of Fran Visco, President
National Breast Cancer Coalition
before the
House Commerce Committee
Subcommittee on Health and Environment
July 21, 1999
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.
1707 L Street, NW, Suite 1060, Washington, DC 20036 phone: (202) 296-7477 fax: (202) 265-6854 http://www.natlbcc.org
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.
Statement of Mary Ann Waygan
March 18, 1999
Hello, my name is Mary Ann Waygan and I am the coordinator for the CDC Breast and
Cervical Cancer Initiative for Cape Cod, Massachusetts.
Before I begin, I would like to thank Senators Chafee, Mikulski, Snowe and Moynihan
for sponsoring this legislation. I would also like to thank Senator Smith for his support of
this bill.
Clearly, the single largest problem facing the Breast and Cervical Cancer Screening
Program today is finding resources and caregivers to provide treatment to the women
who are diagnosed with breast or cervical cancer. The lack of treatment dollars is one of
the biggest policy gaps in the program - and the problem is only getting worse.
The barriers to recruiting providers for charity care are growing, and funding for the
treatment is an ad-hoc system that relies on volunteers, state workers and others to find
treatment services. In the community, we go to tremendous ends to find treatment - and
raise money to help pay for it. I've organized luncheons, bake sales, raffles - you name
it. Anything to raise money for women who could not afford to pay out of pocket for
treatment. Despite these efforts, all too often, we come up short.
Funding for treatment through the CDC program is the biggest problem I face as a
coordinator and frankly a barrier to screening and detection. Funding for treatment is
tenuous at best. Without passage of the Breast and Cervical Cancer Treatment Act,
future funding for treatment for these women will remain uncertain.
I want to tell you one story in particular that clearly illustrates the problem some of these
women face. A woman who lives in Buzzard's Bay, Massachusetts who was diagnosed
with breast cancer through the CDC program.
Arlene McMann is a married woman in her early forties with two teenage sons and no
health insurance.
When Ariene was diagnosed with breast cancer through the CDC screening program, she
was devastated - not just with the diagnosis, but with the fact that she had no way to pay
for the treatment she needed.
Faced with that situation, she and her husband were forced to use the $20,000 they had
been saving for years to pay for their children's college tuition. In less than a year, that
money was gone. After that, she and her husband were forced to go into debt to pay for
her ongoing chemotherapy/radiation treatment and other procedures including a
craniotomy and gall bladder surgery. They are now more than $40,000 in debt, were
forced to move into a much smaller house and lost their dream of sending their sons to
college without going into further debt.
The additional stress and pressure placed on Ariene and her husband by this situation has
turned a difficult situation into an almost unbearable one. To make it even worse, Ariene
recently found out that the cancer has spread to her hip, pelvis, lungs and liver.
Through all of this. Arlene has showed tremendous resolve. Despite being in pain and
discomfort and forced to use a wheelchair, Arlene desperately wanted to be here today to
share her story with you directly. She thought it was important for everyone to
understand not just what the cancer had done to her. but what the affect of having to take
on this incredible financial burden had done to her physical health. mental strength and
family resources.
Due to her condition. Ariene's treatment finally is being paid because she qualified for
disability. But to this day, Ariene is convinced that her cancer would not have spread
had she been able to afford regular visits to an oncologist.
Arlene's energy and determination to fight this disease and remain positive are amazing.
I feel lucky to know her and to have worked with her. I only wish that as the program
coordinator, I could have done more - that I could have assured her that any treatment
she needed would be paid for and that she wouldn't have to spend time dealing with bank
statements, mortgages or packing boxes on top of everything else.
In summary, we hear over and over again that early detection saves lives. In actuality,
early detection alone does nothing but find the disease; detection must be coupled with
guaranteed, quality treatment to actually save lives.
We must pass the Breast and Cervical Cancer Treatment Act to make sure that screening
and treatment always go together.
I would like to thank the National Breast Cancer Coalition for its leadership role in
working to get this legislation passed and thank the members of Congress here today for
sponsoring and supporting this legislation.
Thank you.
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1
HEALTH
Jeb Bush
Robert G Brooks, MD
Governor
Secretary
June 22 1999
The Honorable Connie Mack
United States Senate
517 Hart Senate Office Building
Watchington DC 20510
Dear Senstor Mack
This letter in response to the May 4th telephone inquiry from Mark Smith 10 Margo Blake
regarding cancer treatment for woman enrolled in Florida's Breast and Carvical Cancer Early
Detection Program (the Program) Thank you for allowing us the opportunity to furnish some
details about the Program.
Fior da received 113 award from the Centers for Disease Control and Prevention (CDC) in late
surr mer 1994 We started operations in nine counties in September 1895 and grew to 20
cou in 1996. The 20 counties are comprised of large urban areas, mid-sized counties and
smal rural counties (A map depicting all 20 participating countres 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
sightly over 10000 eligible woman 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 88 Pap smears and mammograms. There are also limited funds for specified
nostic procedure such as colposcopies. biopsies, and breast ultrasounds The CDC funds
can not 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
add tional 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 scenanos that demonstrate this strain, I would like to expand
on the definition of provider as used throughout this letter Normally. we refer 10 the general or
oncologic surgeon as the principal provider or treatment Many others also donate services to
the breast and cervical program. These include oncologists radiologists radiation oneologists,
pathologists and nospitals.
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 encologist 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
2020 Capital Circle SE . Tallahasse FL 32399-1700
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Robyn Lipner
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Senator Mack
Page two
June 22, 1999
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 disgnosed with cancer Needless
to say the providers are concerned with these Increasing numbers Some of the providers
have asked the local program coordinator not 10 refer additional patients is 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
Cictober
Tine fourth county program diagnosed 10 women with breast cancer during their first two
y ears and since January 1999 diagnosed four more women with breast cancer. Ten
providers who originally agreed to each see one to two cliente per year have formeo three
separated groups who have agreed to see one to two clients per group. for a total of three to
SX clients per year. This would not be sufficient coverage if the rate of diagnosing cancer
continues.
CDC nas 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 10 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
diagr osed. 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 disgnosed with cancer or other chronic diseases
So walle 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 likellhood 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 aummary the Florida Breast and Cervical Cancer Program nes 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
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Seriator Mack
Page three
June 22. 1999
Our providers are showing signs of abandoning this program unless we are able to provide
their 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. Mergo 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 you our best
Sincerely
Roluty brook
Robert G Brooks MD
Secretary. Department of Health
RGB/jg
Enclosure
Cc Mark Smith
CDC
March 27, 1998 / Vol. 47 / No. 11
- FOR - CONTROL
AND PREVENTE
209 Imported Dracunculiasis -
United States, 1995 and 1997
MMWR
211 Update: HIV Counseling and Testing
Using Rapid Tests - United States,
1995
215 Strategies for Providing Follow-Up
and Treatment Services in the
National Breast and Cervical
Cancer Early Detection Program -
United States, 1997
MORBIDITY AND MORTALITY WEEKLY REPORT
218 World Health Day - April 7, 1998
219 Notices to Readers
Imported Dracunculiasis - United States, 1995 and 1997
Dracunculiasis is a parasitic infection caused by a filarial worm (Dracunculus medi-
nensis [i.e., Guinea worm]) that is transmitted through contaminated drinking water.
Approximately 1 year after a person is infected, one or more meter-long adult female
worms begin to emerge through the skin, often incapacitating the patient for ≥2
months. Despite a dramatic decrease in cases worldwide, dracunculiasis is still occa-
sionally imported into the United States. Since 1995, two cases of dracunculiasis have
been reported in the United States, both imported from Sudan. This report summa-
rizes the investigation of these cases.
Patient 1. A 9-year-old girl residing in Tennessee had emigrated from Sudan in Sep-
tember 1995 (1). Before the girl left Sudan, a Guinea worm had emerged and had
been extracted from her right lower leg. The lesion had healed when she arrived in the
United States. After she had been in the United States for 3 weeks, another Guinea
worm began to emerge from her left leg. Medical examination at a local health clinic
revealed a string-like worm dangling from a lesion on her left leg, and she was re-
ferred to an infectious disease specialist. The leg was secondarily infected and swol-
len, and the girl was unable to walk. Despite antibiotic treatment, her cellulitis did not
improve, and the lesion was surgically opened, drained, and debrided of pus, necrotic
debris, and fragments of the Guinea worm. The patient was hospitalized for 2 weeks,
requiring surgery to stretch a contracture of her ankle and to apply a skin graft to the
wound. After outpatient physical therapy, she was able to walk without crutches.
Patient 2. A 31-year-old woman residing in Connecticut had emigrated from Sudan
in January 1997. In April 1997, she was evaluated at a university clinic for possible
tuberculosis (TB). A radiograph revealed lung lesions consistent with TB and a worm-
like calcification in her left chest. Physical examination revealed multiple, indurated,
oval lesions 4-8 cm in diameter on both lower legs. The patient reported the lesions
had been present for 1 year and were intermittently painful. She recalled that a long
string-like worm had emerged from her leg during the previous year. Biopsy of the leg
lesions revealed erythema induratum, consistent with Bazin disease, a cutaneous
manifestation of TB. The patient had evidence of a dead and calcified Guinea worm in
her chest and a history suggesting a live Guinea worm had emerged from her leg
before she arrived in the United States. She also had pulmonary TB with a cutaneous
tuberculid skin manifestation. Treatment with isoniazid, rifampin, and pyrazinomide
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Vol. 47 / No. 11
MMWR
215
HIV Counseling and Testing - Continued
ing that persons who receive preliminary results understand the meaning of the result
and prefer rapid testing (4). When additional rapid tests become available for use in
the United States, the PHS will re-evaluate algorithms using specific combinations of
two or more rapid tests for screening and confirming HIV infection.
References
1. Kamb ML, Bolan G, Zenilman J, et al. Does HIV/STD prevention counseling work? Results from
a multi-center randomized trial (Project Respect) [Abstract 0134] In: Program and abstracts of
the International Congress of Sexually Transmitted Diseases. Seville, Spain: Association for
Research in Clinical Microbiology, 1997:83.
2. CDC. HIV counseling and testing in publicly funded sites: 1995 summary report. Atlanta: US
Department of Health and Human Services, CDC, September 1997.
3. George JR, Schochetman G. Detection of HIV infection using serologic techniques in AIDS
testing: a comprehensive guide to technical, medical, social, legal, and management issues.
2nd ed. Schochetman G, George JR, eds. New York: Springer-Verlag, 1994.
4. Kassler WJ, Dillon BA, Haley C, Jones WK, Goldman A. On-site, rapid HIV testing with same-day
results and counseling. AIDS 1997;11:1045-51.
5. CDC. Interpretation and use of the Western blot assay for serodiagnosis of human immunode-
ficiency virus type 1 infections. MMWR 1989;38(suppl 7):S4-S6.
6. Stetler HC, Granade TC, Nuñez CA, et al. Field evaluation of rapid HIV serologic tests for screen-
ing and confirming HIV-1 infection in Honduras. AIDS 1997;11:369-75.
7. Kassler WJ, Haley C, Jones WK, Gerber AR, Kennedy EJ, George JR. Performance of a rapid,
on-site human immunodeficiency virus antibody assay in a public health setting. J Clin Mi-
crobiol 1995;33:2899-902.
Strategies for Providing Follow-Up and Treatment Services
in the National Breast and Cervical Cancer Early Detection Program -
United States, 1997
The Breast and Cervical Cancer Mortality Prevention Act of 1990* authorized CDC
to establish the National Breast and Cervical Cancer Early Detection Program
(NBCCEDP) to increase screening services for women at low income levels who are
uninsured or underinsured (1). Although the NBCCEDP covers most diagnostic serv-
ices that women need after receiving an abnormal mammography or Papanicolaou
(Pap) test result, the program does not reimburse for breast biopsies. In addition, the
Act prohibits the use of NBCCEDP funds for cancer treatment. Participating health
agencies must ensure that NBCCEDP clients receive timely, appropriate diagnostic
and treatment services. In 1996, CDC began a case study to determine how early de-
tection programs in seven participating states (California, Michigan, Minnesota, New
Mexico; New York, North Carolina, and Texas) identified resources and obtained diag-
nostic and treatment services. This report summarizes the results of the study (2),
which indicate that respondents in these states reported that treatment had been initi-
ated for almost all NBCCEDP clients in whom cancer was diagnosed. However, re-
spondents also considered the strategies used to obtain these services as short-term
solutions that were labor-intensive and diverted resources away from screening ac-
tivities.
In the seven states, NBCCEDP-sponsored screening services had been provided for
≥3 years, and breast cancer had been diagnosed in ≥60 women. The states were se-
Public Law 101-354.
216
MMWR
March 27, 1998
National Breast and Cervical Cancer Early Detection Program - Continued
lected to provide a range of geographic locations, a combination of urban and rural
populations, and racial/ethnic diversity among program clients. Researchers con-
ducted semi-structured interviews with 192 persons affiliated with the seven state
programs. Of these interviewees, 120 (63%) were providers of screening, diagnostic,
and/or treatment services; 58 (30%) were state program staff; and 14 (7%) were coali-
tion members. Interviews included topics such as guidelines related to diagnostic and
treatment services, strategies used to obtain and pay for services, level of effort re-
quired to secure these services, and changes in strategies over time. Each interview
was tape recorded and transcribed. Using a systematic scheme derived from the re-
search questions, three researchers coded the same transcripts until an inter-rater
agreement of 80% was reached. Thereafter, all transcripts were coded independently.
Coding results were entered into text analysis software that sorts text from transcripts
into sets of information, themes, and evidence relevant to the specific research ques-
tions (3). The results reflect a synthesis of the interviewees' responses.
Respondents described several strategies used to ensure necessary diagnostic and
treatment services for women screened through the NBCCEDP. State-level strategies
in all states included 1) computerized tracking and follow-up systems that used pro-
gram surveillance data to identify and manage clients in need of diagnostic and treat-
ment services; 2) provisions in contracts requiring screening providers to arrange for
diagnostic follow-up and treatment before screening women; and 3) arrangements
with provider groups and state professional associations for free or reduced-cost serv-
ices for NBCCEDP clients. All states also had access to public or private funds to help
support services not covered by the program; such revenue sources included state
appropriations from general or tobacco tax revenues or funds from private founda-
tions. These funds were available primarily for breast diagnostic services.
Local strategies tailored to the needs of individual clients were used to obtain diag-
nostic and treatment services. Common strategies reported by respondents included
the following: providers billed public or private insurance plans; providers or local
health departments helped clients apply for public assistance programs; providers re-
ferred clients to public hospitals; county indigent-care funds and hospital community-
benefit programs financed services; clients received services through individually
negotiated payment plans; and clients paid reduced or full fees for services.
Respondents strongly supported the continued growth of NBCCEDP and its goals
but expressed several concerns. First, considerable time and effort were involved in
AST
developing and maintaining systems for diagnostic follow-up and treatment. Second,
the process of identifying available resources within states for diagnostic and treat-
ment services was considered labor-intensive. Third, the lack of coverage for diagnos-
tic and treatment services negatively affected recruitment of providers and restricted
the number of women screened. Fourth, respondents believed that an increasing
number of physicians will not have the autonomy, because of changes in the health-
care system, to offer free or reduced-fee services to NBCCEDP clients.
Respondents reported that arrangements for treatment were made for almost all
NBCCEDP clients who received a diagnosis of breast cancer or invasive cervical can-
cer. Respondents stated that some women experienced time delays between screen-
ing, definitive diagnosis, and initiation of treatment. State program officials reported
that, according to 1992-1996 surveillance data, small numbers of clients in whom can-
cer was diagnosed (i.e., from three to 13 women in each state) subsequently refused
Vol. 47 / No. 11
MMWR
217
National Breast and Cervical Cancer Early Detection Program - Continued
treatment. Because these clients were not interviewed, it could not be determined
whether financial barriers contributed to their decisions to refuse treatment or their
loss to follow-up.
Respondents were concerned that the NBCCEDP did not provide funding for all
diagnostic procedures and treatment for the diseases for which clients were being
screened; approaches for delivering services were fragmented; and the process of ob-
taining resources required substantial effort at the state, local, and provider levels.
Respondents reported that the continuation of every strategy for diagnostic and treat-
ment services beyond the next few years is uncertain.
Reported by: PM Lantz, PhD, Univ of Michigan School of Public Health, Ann Arbor. LE Sever,
PhD, Battelle, Centers for Public Health Research and Evaluation, Seattle, Washington. Program
Svcs Br, Office of the Director, Div of Cancer Prevention and Control, National Center for Chronic
Disease Prevention and Health Promotion, CDC.
Editorial Note: During July 1991-March 1997, the NBCCEDP provided 576,408 mam-
mograms to women aged ≥40 years, and 3409 cases of breast cancer were diagnosed.
During this same period, the program provided 732,754 Pap tests; 23,782 cases of cer-
vical intraepithelial neoplasia and 303 cases of invasive cervical cancer were diag-
nosed. These totals included women referred to the program for diagnostic evaluation
of an abnormal screening result. The NBCCEDP internal estimates suggested that dur-
ing this period only 12%-15% of uninsured women aged 40-64 years in the United
States had been screened by the program (CDC, unpublished data, 1997).
Screening alone does not prevent cancer deaths; it must be coupled with timely
and appropriate diagnostic and treatment services. The Congressional mandate for
NBCCEDP requires grantees to take all appropriate measures to ensure provision of
services required by women who have abnormal screening results. CDC provides
funds for case management to help these women access health-care services. To in-
crease the comprehensive nature of the program, CDC recently approved the use of
NBCCEDP funds for breast biopsies.
The results of this study indicate that state health departments and their partners in
the seven states had developed a wide range of strategies for diagnostic and treat-
ment services in the absence of program resources. However,the time and effort-re-
**
quired to arrange and maintain these services diverted resources away from
screening activities.
This study was subject to at least two limitations. First, the results were based
solely on the experience and opinions of informed professionals affiliated with the
program and did not include the perspectives of NBCCEDP clients. Second, the results
may not reflect the program experiences in other states. Case-study methods, how-
ever, are an appropriate and well-accepted approach to gaining in-depth under-
standing of complex programs in real-life situations (4). The validity of the findings
was enhanced by developing standard instruments to guide the semi-structured inter-
views, protecting the confidentiality of respondents' remarks, using interview tran-
scripts for data analysis rather than relying on interviewer notes, and obtaining
feedback concerning state summary reports from respondents.
As more women are screened by the NBCCEDP, a greater burden will be placed on
participating health agencies, providers, and other partners to obtain resources for
breast and cervical cancer treatment. Case-management services will continue to be
essential in helping underserved women overcome financial, logistical, and other bar-
218
MMWR
March 27, 1998
National Breast and Cervical Cancer Early Detection Program - Continued
riers to receiving these services. Other long-term solutions to ensure that women in
the program receive necessary treatment services are being pursued.
References
1. Henson RM, Wyatt SW, Lee NC. The National Breast and Cervical Cancer Early Detection Pro-
gram: a comprehensive public health response to major health issues for women. J Public
Health Management and Practice 1996;2:36-47.
2. Lantz PM, Macklem DJ, Hare M, Richardson LC, Sever LE, Orians CE. Follow-up and treatment
issues in the National Breast and Cervical Cancer Early Detection Program: results from a
multiple-site case study-final report. Baltimore: Battelle, Centers for Public Health Research
and Evaluation, 1997.
3. Miles MB, Huberman MA. Qualitative data analysis: an expanded sourcebook. 2nd ed. Thou-
sand Oaks, California: Sage, 1994.
4. Yin RK. Case study research: design and methods. Sage: Newbury Park, 1989.
Notice to Readers
World Health Day - April 7, 1998
"Invest in the Future: Support Safe Motherhood" is the theme in the United States
for World Health Day, April 7, 1998. In the United States, this day will focus on the
continued importance of maternal health and opportunities to improve this aspect of
women's health. Although the risk for women dying from pregnancy has decreased
substantially during the past 50 years, the maternal mortality ratio for the nation has
not decreased since 1982 (1). Approximately 50% of pregnancy-related deaths remain
preventable (2), and the extent of morbidity associated with pregnancy is often unrec-
ognized.
Safe motherhood begins before pregnancy with healthy lifestyles that include
good nutrition, physical activity, preconception care, and avoidance of harmful sub-
stances. Safe motherhood continues with planned pregnancies; early, quality prenatal
care; knowledge of warning signs of problems; and the delivery of a healthy, full-term
baby with the minimum of necessary interventions. Postpartum support for women
and their families in a positive, nurturing environment also is important.
In 1998, in the United States, women can plan, carry, and deliver a pregnancy more
safely than in the past. However, additional efforts need to be taken to make safe
motherhood a reality for all women. Improved public health surveillance, prevention
research, and prevention programs are needed to continue improving the health of
women before, during, and after pregnancy and delivery. Examples include new sur-
veillance methods to monitor and understand pregnancy complications; prevention
research on the essential content of prenatal care; and prevention programs to ensure
the adequate intake of folic acid by women of reproductive age to prevent neural tube
defects (3).
The World Health Day Advisory Committee of the American Association for World
Health coordinates World Health Day activities in the United States. Additional infor-
mation about special events and resource materials about World Health Day 1998 are
available from the American Association for World Health, 1825 K Street, N.W., Suite
1208, Washington, DC 20006; e-mail: [email protected]; or from the World-Wide
Web site: http://www.aawhworldhealth.org.