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Acknowledgments
Follow-Up and Treatment Issues in
Funding for this study was from the Centers for
the National Breast and Cervical
Disease Control and Prevention, Division of
Cancer Prevention and Control
Cancer Early Detection Program
The study was designed and implemented by a
team of investigators from Battelle Centers for
Study Results
Public Health Research and Evaluation and the
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
Cervical Cancer
Scroming
Early Detection
Diagnosis
Treatment
that women with abnormal screening results and
Program
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
Strategies to help
Strategies to help
ensure that weeke
casure that women
services organized?
obtain diagnostic lesse
1) gain access to
they used
treatment
What role do coalitions or other partnerships play?
n receive treatment
Research Questions
Phases of the Study
Have the methods or tactics being used to identify
Phase I: Core set of data on 35 programs
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)-Tumor
diagnostic and treatment services in a program such
as the NBCCEDP?
registry data and program data from 3 states (CA,
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
Select Sinn,
Criteria for
program, system, or organization works within its
Projects
I
Events for
everyday setting
Cases is
Data
Develop
the Study
Collection
it focuses on a particular problem, issue, or structure
Ectoblish
Quastions
8 Model
which is studied in relationship to the larger program,
to be
of Program
Design Data
Answered
Conduct
Collection
system, or organization
Through
Data
lastruments
Research
Collection
While describing this relationship, the case study may or
may not lead to conclusions about outcomes
Performs
Propose
Develop Date
A case study uses all appropriate sources of
Date
Case Study
Analysis Plan
Analysis
Report
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
9
10
-7
A total of 192 people were interviewed
Local staff
15
2
2
2
4
4
.
-
Screening
60
3
6
8
5
7
U
8
provider
Dx or Tx provider
45
7
4
9
3
3
13
6
Advisory Board\
10
2
.
I
J
I
2
I
Coalition member
Other
4
-
.
1
2
.
1
.
TOTAL
192
27
16
12
21
24
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
Creative responses and strong partnerships have
Programs operate within changing health care
emerged at state, local and provider level
environments (i.e. growth of managed care)
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 (mendated by Congress)
- lack of coverage for all diagnostic follow-up services
- liability 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, fatalistic attitudes,
fear)
- immigration issues
Recommendation
key
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?
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 I. Macklem, MEd
Lisa R Shugarman, BA
University or Michigan School or Printic Health
Amt Arber, Mistagen
Donna B. Knutson, MSEd, CHES
Cames for Disease Control and Prevennon,
Division or Cancer Prevention and Control
Atlanta. Conga
Lowell E Sever, PhD
Barrette Centers for Public Health Research and Exairation
Searte, Washington
This report describes strategies used to provide diagnostic follow-up and
treatment services to low-income women screened through the National
Breast and Ceroical Cancer Early Detection Program.
he Breast and Cervical Cancer Morrality Prevention Acr, enacted by
T
the U.S. Congress in August 1990 (Public Law 101-354) authorized
funds for 3 national screening program for breast and cervical cancer
for medically underserved women This program-the National
Breast and Cervical Cancer Early Detecrion Program or NBCCEDP-is admin-
istered by the Centers for Disease Control and Prevention (CDC). The goal of
dus large public health initiative is a reduce the morbidity and morrality
associated with breast and cervical cancer in the United States.
The NBCCEDF is implemented through cooperative agreements with
qualifying health agencies that provide free or law-cost screening B uninsured
or underinsured low-mcome women, develop and disseminate public and
professional education strategies establish qualiry assurance systems, engage
. surveillance and evaluation acrivities, and develop coalitions and parmer-
ships.² To dare, the health departments of all 50 states, the District of Columbia,
4 U.S. terrimnes, and 15 American Indian and Alaska Native tribes or tribal
a 1999 by the jambs Institute
organizations have received support for comprehensive Breast and Cervical
of Worker's Health
Cancer Early Derection Programs (BCCEDPs). The age and income eligibility
by Emerge Scance inc
1045-3867/99/320.00
requirements for screening services vary across the programs, but all programs
PT 516e9-3867(98)00027-9
42 NOMENS HEALTH SSUES VCL MANUARY/S
21
target high-pricrity groups, for example, older women wemen if racal and
sthnic minority groups, women winit disabilities, lesbrans, md :vomen who
live III rural or orier hard-to-reach areas.
Through September 1997, more than 15 million = mammograms and
Papanicoiaou smear TESTS were provided inreugh the NBCCEDP. The ITC-
gram aiso covers a number of milow-up diagnostic procedures. including
diagnostic mammegraphy, Teast airrasound, surgical consultation, me nee-
dle aspirance of the creast ma minoscopy Because #: limited resources,
however. program funds have not been available 8 cover 311 or me diagnostic
tests that women may need for follow-up of abnormal screening resuirs and P
mach 3 defininve diagnosis (mciuding excisional treast biopsy.
localizanon for breast ICDSV, II needle core breast bicosy). In addinon, the
federal legislation pronibies the use or national program funds to pay for
treamment services for women diagnosed with cervical intraepitheual neopiasia
(CIN) or for any component of Teachent for breast or cervical
including surgery, -adiotherapy. inemotherapy. hormonal herapy. and breast
Through September
Despire these restrictions in funding diagnosite and creament services are
1997, more than 1.5
recognized as essential components of HIS screening ininadive Federal legic-
million free
larion requires that participating programs ensure that vomen with abnormal
screening resuirs receive definitive diagnoses and that twy have access R
mammagrams and
timely and appropriate meannent services for CN H ancer if needed,
Papanicolaou smear
regardless or their ability 9 pay. Parecipating health agencies are expected
tests were provided
R build coilaterations and parmerships with hospitals and community-based
organizations = cotain access B and resources for diagnostic reament. and
through the NBCCEDP
support services.²
Anecdoral information reported 3 CDC suggests that partipating agreem-
cies are indeed finding innovarive and interesting warz B secure diagnostic
follow-up and Teamment services for wemen in need however. this aspect of
the NBCCEDP has not been assessed in depth or systemancilly. Thus. we
underrook a three-part study B decument md investigare the strategies and
approaches that state BCCEDP, have implemented 9 secure diagnosur
follow-up and cancer Treatment service for chenis I the absence or federal
dollars for these acriviries: 1) 1 descriptive study of the general scategies and
activities regarding diagnostic and readment services at И BCCEDPs: 2) in
in-depth case study of 7 or the 35 state programs and 3) documentation of
cancer realment services received and the timing H. these services by linking
information from 3 state BCCEDPs with dara from oculation-based number
regismes. In this report, we present the results from the irst study component
METHODS
All 35 stare 3CCEDPs that received federal funding in 3 comprehensive
screening program before Center 1. 1996 (and thus had significant experience
dealing with clients in need of diagnostic follow-up and reaument services)
were selected for study. Dara were collected with the assistance of 13 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 dara collection form that consultants could seif-administer as part of their
general dunes was designed and nict tested. The form was used 3 document
state-specinc information III the organizational SUPPLIERS of the screening
program. mechanisms for coufying women of results. md strategies for
securing diagnosed and rearnent services for clients in need Written instruc-
nons = completing the form and 1 3-hour training session were provided.
Consumers completed 1 form in each of mea issigned states in = sample
STRATECISS
2
CANCER
SCIENING
PROCRAMS
(rariging from ! R 3 states If. consultant), using their newiedge of the State
program and available materials and documents They LISU discussed specific
issues in their rourine rechnical assistance ails with states : clarification irom
the state program was needed. Completed forms (N = 35: 100% response me)
were forwarded R University or Michigan reach statf siong with my
relevant written documents.
RESULTS
One way = which 311 state programs WCIX 3 ensure mar needed failow-up
diagnostic :2513 and rearment services are received is by tacking clems using
program surveilance dara. State programs have designed and moiemented a
variety or management information systems TO no women firough the
processes of screening. diagnostic fullow-up, ind Teamment mission In
addinen. ar the time of our data collection. most states had WHEN guidenns
or protecols for screening providers for nonrying women of. screening results
States are required to
and for tracking women reeding diagnostic services the in abnormal
report to CDC the date
screening result (Table 1). in addition 39% or states had Millen guidelines in
that cancer treatment
ensuring that women receive defininve diagnosue follow-up sen iss. inc 77%
had written guidalines for ensuring that weren ininate Teacherr for breast or
was initiated for
cervical cancer or CN. Similarly, most states had written guidelines or defined
breast or cervical cancer.
proteccis for providers regarding accropriate clinical cathways for diagnosne
follow-up (86% for breast diagnostics and 33% for cervical diagnosues).
whereas fewer states had developed proteccis for appropriate treatment
pactways (69% for breast cancer. 56% for servical cancer, and 50% for CM.
States are required R report = CC the dare that succer meatment was
inimared for women diagnosed with breast or cervical cancer Even those states
without written guidelines or protecols regarding how women should get,
from an abnormal screening result to treatment have implemented surveillance
systems that include the Teament inidance date. Some sere programs
document addinonal information about treatment For example, cur resuits
suggest that 21 stare programs (60%) were routinely documenting each citent's
minal course of cancer meanment. and of mese programs. i (23%) were
documening the content of Teament beyond the initial course Five stare
programs (I+%) were documenting how each client's ancer treatment vas
funded, although none were collecting information on our-of-pecker expenses
for diagnostic H treatment services.
State-level resources used B fund or to provide diagnosne and treatment
services R women in the absence or federal program dollars = des activities
are listed in Table 2 The more common straregies were appeais through the
state medical society for physicians B volunteer or donate procedures and
referral of clients B designated providers (such as state-funded cancer centers,
teaching hospitals. and public hospitais). Several states receive funding for
diagnostic and treatment services from their legisiatures. This inding comes
from state appropriations provided through general public revenue = tobacco
excise as revenue In some of these states. funds are provided exclusively for
women screened through the 3CCEDP, in other states, the funds are available
a all ciriZens who meet state-istablished eligibility CHECK for SERVICES. in some
states. the funds are restricted B paying for breast cancer services (primarily
for diagnostic DSIS).
A wide range of strategies and activities organized 18 the local level (in.
country. city or individual cirucal facility) were being used B provide diag-
nosuc and treatment services = women in the absence of program dollars for
these activities (Table 3). The most common strategies used If me iceu level
include referrais to designated providers who have agreed = serve program
Table L PREVALENCE OF WRITTEN GUIDELINES FOR NOTIFICATION TRACKING. AND SERVICE
DELIVERY IN STATE BREAST AND CERVICAL CANCER EARLY DETECTION PROGRAMS
(N a 35)
Does : Sente Program Have Written Guiddines for
Yes
No
Notifying women of screening results?
Breast cancer screening results
32 (91%)
3 (9%)
Carvical cancer screening results
32 (91%)
3 (9%)
Breast diagnosne est results
31 (89%)
+(11%)
Cervical cancer diagnosne est nesuits
H (89%)
4 (11%)
Tracking women needing follow-up services?
Breast cancer diagnostic services
35 (100%)
a
Cervical cancer diagnosue services
34 (97%)
1 (3%)
Breast cancer treatment services
32 (91%)
3 (9%)
Cervical neopiasia Teament services
32 (91%)
3 (9%)
Cervical and Teament services
32 (91%)
3 (9%)
Ensuring women receive needed diagnostic services?
Breast cancer diagnostic services
31 (89%)
4 (11%)
Cervical CHECK diagnostic services
31 (89%)
4 (11%)
Ensuring women initiate needed treatment?
Breast and treatment services
27 (77%)
3 (23%)
Cervical neoplasia reament services
7 (77%)
8 (23%)
Cervical SINCE treatment services
n (77%)
8 (23%)
Defining appropriate pains for diagnosue follow-up and treatment?
Breast me diagnosne services
30 (86%)
5 (14%)
Cervical cincer diagnostic services
29 (83%)
6 (17%)
Breast cancer treatment services
24 (69%)
11 (31%)
Cervical negulasia treatment services
II (60%)
14 (40%)
Carvical cancer Treatment services
3 (66%)
12 (34%)
clients for = H at a reduced COST. assistance a clients in applying for
Medicaid, or referrals to other government-sponsored insurance programs.
Another COMMISSION strategy is the use of funds from local foundations, charitable
organizations. or corporate sponsors.
Several different strategies that involve clinicians R providers (in hospi-
tais. clinics. community health centers, and local health departments) were
used R secure diagnosic 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, negodate payment plans with clients, and write off
diagnosne and treatment services as bad debt. In half of the states, a formal or
informal system exists for retating referrals for services not covered by
program funds among providers in one or more locales.
More than is different strategies or activities were named as being used B
secure diagnostic and meatment services for BCCEDP clients in need. These
strategies. in be order of frequency with which they were named, were 1)
reduced fee-icr-service or 3 sliding-fee scale for services. 2) regoriated pay-
ment plans between providers and clients; 3) in-kind chantable conmibutions
of providers (including hospital indigent care programs); 4) assistance in
LANIZ II AL STRATEGIES N CLICER SCIENING PROCEAMS 15
Table 1 USE CF STATE-LEVEL STRATEGIES TO PROVIDE DIAGNOSTIC AND TREATMENT SERVICES IN
THE NATIONAL BREAST AND CERVICAL CANCER EARLY DETECTION PROGRAM (N =
Number of State Programs Usmg Surangy m Promie.
Diagnostic
Treatment
Strategies Organized major Administered It State Lenei
Services City
Services Cnty
Back Services
No.: Used
Organization of charity care/m-kind donance
3 (9%)
-
15 (43%)
V (18%)
A. services as state level
Referral or clients B state-funded ancer Certify
1
6.5
the (14%)
30 (86%)
Referral or chenrs B other designated providers-
: (3.0)
: (3%)
13 (37%)
20 (57%)
who have agreed R serve program
Clent assistance in applying for Medicaid or
0
]
IC (29%)
25 (71%)
other state program
Indian Health Service funds
]
1
8 (23%)
my (77%)
Race for the Cure funds
5 (L%)
: (3%)
1 (3%)
27 (77%)
Other Komen Foundation funds
3 (9%)
0
0
32 (91%)
Blue Cross Foundation funds
]
: (3%)
0
31 (97%)
Ceneral public revenue in fund
2 (17%)
:
4 (11%)
25 (71%)
Tobacco excise as revenue in fund
1 (3%)
(3%)
1 (3%)
32(91%)
applying R Medicaid or 1 state-sponsored insurance program: E) referral = a
designated cancer center or 1 publicly funded medical Sciliry previding
indigent care: 6) use of state appropriations for diagnostic or reatment
services. If both: and 7) use or funds rmsed through a Susan G Kumen Breast
Cancer Foundation Race for the Cure.
State programs callaborate with a variety of public and private agencies
and organizations in their anempts to bring diagnostic and treatment services
a BCCEDP chenrs. Collaboranng agencies mclude 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 sociecies, state hospital assoca-
Table 3. USE OF LOCAL-LEVEL STRATEGIES TO PROVIDE DIAGNOSTIC AND TREATMENT SERVICES
IN THE NATIONAL BREAST AND CERVICAL CANCER EARLY DETECTION PROCRAM (N - 35)
Number of State Programs Usung Scrangy a Provide
Diagnosm
Treatment
Strategies Organized ma/or Administered at Local Level
Services Only
Services Only
Borts Services
Not Used
Referral of clients R designated providers
0
0
25 (71%)
10 (29%)
Client assistance in spplying for Medicaid or
2 (6%)
! (3%)
22 (63%)
10 (29%)
other state program
Race for the Cure funds
3 (9%)
0
6 (17%)
26 (74%)
Other private coundation funds
3 (9%)
a
11 (31%)
21 (60%)
Assistance from local American Cancer Society
! (3%)
0
in (14%)
29 (83%)
County money in fund
0
0
3 (9%)
32 (91%)
-Donation of services or charity care (including
1 (3%)
I (3%)
32 (91%)
I (3%)
meigent care programs)
Reduced tee-for-service
2 (6%)
0
27 (77%)
6 (17%)
Negotiated payment plan
0
: (3%)
31 (89%)
3(9%)
Services written in 15 bad debt
]
0
25 (71%)
10 (29%)
System for rotating referrais
1
0
16 (46%)
18 (51%)
16
tions. private foundations. local corporations. churches and synagogues,
YWCAs. and community health centers.
In Maryland. a centralized response organized at the state level was
implemented R ensure mar women screened for breast md servical cancer
receive all needed diagnosne and treatment services. In July 1992, the Mary-
land legislature allocared funds for ine Maryland Breast and Cervical Cancer
Diagnosis and Treatment Program. This program. funded through general
public revenue and minacco tax revenue. provides a means by which women
an receive free breast and cervical cancer diagnosic ests and reament
services. Providers under contract with this fund ofer 1 wide ange of
diagnostic and meament procedures for women meering specific sligibility
criteria. This state-funded program is not restricted to women screened
through the BCCEDF. although the engibility criteria are sumiar
By contrast. the Minnesota 3CCEDP does not have access to state funds B
supplement the federal program. Rather. the Minnesora program has devel-
oped a relationship with the Susan G. Komen Breast Cancer Foundation Race
for the Cure in the Twin Cities The majority or the money raised in this annual
Multiple strategies are
walking/running fundraising event is allocated R the Minnesora 3reast and
being used to ensure
Cervical Cancer Central Program B pay for breast ultrasounds and curparient
that program clients
breast biopsies for women throughout the state This strategy involves 1
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 meanment us breast and cervical
services.
cancer. or CIN. and in fact. anly half or 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 Minnesora BCCEDP aiso refers women P Medicaid or Minnesota-
Care (a state-sponsored health insurance program for low-income people) and
negotiates payment pians. reduced fee-for-service, or charity are for individ-
ual cases.
DISCUSSION
Through the NBCCEDF. low-ncome unmsured and undermsured women
receive important clinical preventive services: breast and cervical cancer
screening. These women. however. are among those with the fewest resources
R pay for diagnostic follow-up DESIS or for Teamment services for 3 subsequent
diagnosis of CIN. cervical cancer. or breast cancer. The NBCCEDP's gual a
reduce morbidity and mortainy from breast and cervical cancer canner be
realized unless women with abnormal screening results receive 1 definitive
diagnosis and receive prompt and effectious herapy for cancer or precancer-
aus lestons.
The NBCCEDP does not cover all the diagnostic services that clients may
need. and IT covers no realment 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 partnerships with private founda-
Hons). Other strategies are decemmalized and informal, redecing parmerships
and collaborative arrangements that have been worked our as ice level of a
community or 1 within 1 single health care instinution. There is great reliance
on providers of diagnosur and treatment services R offer NBCCEDP chenrs
different types of charity care, reduced in or long-term payment plans. Many
of the strategies or approaches in which stare programs rely to provide
diagnostic and readment services receive some charge (either full !!! Jr 1
E
LV
CANCER
SCIEENING
PROCRAMS
47
reduced in = the cilerit The number at ECCEOP dients
charged for
follow-up BD and rearment services. = amount of these ciarges, and the
degree to which financial barners contribute B = delivs or minsais icr are
are not known
Approaches providing diagnostic and treatment services vary greativ
across states. This is not surprising. given the different socionalitical environ-
ments H the states and me different ways in which they have organized H
structured their BCCEDPs. Scraces and MMS aiso vary within states
Communities and individual facilines WITHIN i state have CS B different
resources. and health service delivery systems vary across mens of 3 state
Thus local programs within the same state have devised different means or
providing diagnostic and Tearment services D THEY dienes.
At the Time B this study, some state programs did not have any written
guidelines or protocols ior clinical providers for tacking cliens or in ensuring
the initiance of follow-up or Teament services. The NBCCEDP sconscred
programs are required to have an active medical advisory comminee H
consultant that approves clinical protochis/guideimes anc crevides oversight
9 the quality I the services being delivered The = recommends nar
NECCEDP sponsored programs use clinical pracence guidenes established bv
nationally recognized organizations as a basis ist developing time crotocols
for their programs. Some state programs were in the process = designing or
approving such guidelines at the time or cur study.
The results or this study are limited in several wavs. Ne is not have
detailed information regarding me history behind the development of careain
policies or the strengths and weaknesses of various Trategies or acts Ne
also do not have information regarding me effort If somes required R
implement arious strategies cr the efficacy = specific appreaches in addition,
winie we have identified 3 wide variety or acrivities that If underway P
provide women with diagnostic foilow-up and treatment services, these results
do not mil us if women are actually receiving the services they need in a amaly
fashion. Yes the results of his study an answer important questions about the
NBCCEDP and the need for its paracipating health agences R cirtain
resources for some diagnostic tests and for 10 Teament services. This research
represents the first systematic !cok at how stare health agencies are working R
provide NECCEDP clients the diagnostic and reament services that the
program does nor cover. In addition. this study sheds light = how 1 large
federal program has been implemented 30 the state are leal levels and how
funding restrictions in the federal program have been addressed = innovative
ways by collaboraning institutions and organizations. Myriad health agencies
and organizations sponsor free or reduced-cost screening programs for 1
diseases other than breast or cervical cancer withour afforing coverage for
definitive diagnostic and Teament services. The strategies mi approaches of
the 35 state BCCEDPs described here may be useful and relevant B those
implementing other types ai 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 IFC was incroved by
the University of Michigan Health Sciences Human Subjects Review Commit-
tee. Rosemarie Henson MSSW. MPH, Stephen Wyar DCM MPS Nancy C
Las. MD. Diane Dunet, MPA Jane Schulman, PhD, Martha Hare, PhD. Carlyn
Crians. VA and Madelaine Pfanier contributed B = design and implemen-
tadon or the project in addinor. the suchors mark = CDC Program
Cersultants for their insperation with and = TIS =
18
REFERENCES
L The Breast and Cervical Cancer Morrality Prevention Act of 1990. #ZUSCHII erseq
51501-1509 (1990).
2 Henson IM Wyar SW, Las NC The National and Cervical Cancer Early
Demenous Program: & comprehensive public hubit response = the majore hunkh
issues for women. I Public Health Management Face 1996246-17.
3. US Department of Health and Human Services. The National Breast and Cervical
Cause Easly Demenon Program: Airl-Clance 1998.
& Reynoids I States. bight. DC-sponsored Income and curvical cancer creaming.
I Nad Cancer: Inc
5 Laner PM, Sever LE mail Samagive incomming follow-upand
III the nanonal Imme and cervical CRIMER eashy demetion program-United Stane,
1997. MMRW
6 Capian LS. Heiziness KT Delay E buenst cancer: & Deview of the literature Public
Health Rev 1993;20.187-214.
7. US. Department of Health and Human Services. The national strategic plan for the
easiy detection and commi of breast and cervical cancerel Adams: Centers for
Disease Connol and Prevennon, 1994
8 Maraliz M. Odoff TM Desonia R Transforming STATE health agencies B meer
CUITERIS and funnoe challenges Washington (DC: National Covernor's Association,
1997
9. Sudmicts L Serverson B. Blais HN. Golay E Richards TB Thorton IN. Analyzing
organizational practices B local health organizations. Public Health Rep 1993;109:
485-90.
LANIZ = AL STRATEGIES N CANCER SCIEENING PROCZAMS ;
Acknowiedgments
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 Battelle 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
Batteile 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 Brunk and
developed and implemented by states to ensure
Carvant Comm
Screaming
Diagnosis
Transment
that women with abnormal screening results and
Early Detecmen
Programs
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
Surangies - being
Strangies - help
- - -
- - -
services organized?
- disgrame -
" - - -
they -
I
What role do coalitions or other partnerships play?
n reserve -
Research Questions
Phases of the Study
Phase I: Core 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)-Tumar
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
Describe
Secure -
Crimine for
Projects
program. system, or organization works within its
beckming
Evenue for
everyday setting
Come .
Date
I
the Study
Collection
it focuses on a particular problem. issue, or structure
Email
Quanions
. Mindel
which is studied in relationship to the larger program,
to be
8 I
Durage Date
Annuared
Common
Collernon
system, or organization
Through
Due
-
Research
Collection
While describing this relationship, the case study may or
may not lead to conclusions about outcomes
Performs
I
Develop Date
A case study uses all appropriate sources of
Date
y 1
Amotican Plan
Analysis
I
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 smong 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
$8
13
4
11
4
,
10
7
A total of 192 people were interviewed
Local staff
15
2
2
2
4
4
1
Screening
60
J
5
1
5
,
U
$
provider
Dx or Tx provider
45
7
4
9
3
3
13
s
Advisory Beard
10
2
1
)
-
2
-
Coalition member
Other
4
-
-
I
:
1
TOTAL
192
:7
16
32
:1
24
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
Information lacking for many important issues:
Availability of state or foundation funds to
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
- liability 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 (a.g. transportation, scheduling)
and difficult to manage/administer
- cultural barriers (a.g. language barriers, fatallatic 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 Foilow-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 wormi) that is transmitted through contaminated drinking water.
Approximately 1 year after a person is infected. one or more meter-long aduit 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 swoi-
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(suppi 7):S4-S6.
6. Stetler HC, Granade TC, Nunez CA, et ai. Field evaluation of rapid HIV serologic tests for screen-
ing and confirming HIV-1 infection in Honduras. AIDS 1997;11:369-75.
7. Kassier 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 Carvical 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.
ONE HUNDRED SIXTH CONGRESS
TOM BLILEY VIRGINIA CHAIRMAN
W.J. "BILLY" TAUZIN. LOUISIANA
JOHN 0 DINGELL MICHIGAN
MICHAEL G. OXLEY OHIO
HENPY A WAXMAN CALIFORNIA
MICHAEL BILIRAKIS FLORIDA
EDWARD MARKEY MASSACHUSETTS
U.S. Douse of Representatives
JOE BARTON TEXAS
RALPHA HALL TEXAS
FRED UPTON. MICHIGAN
RICK BOUCHER VIRGINIA
CLIFF STEARNS FLORIDA
EDOLPHUS TOWNS. NEW YORK
Committee on Commerce
PAUL E. GILLMOR. OHIO
FRANK PALLONE. JP. NEW JERSE.
JAMES C GREENWOOD PENNSYLVANIA
SHERROD BROWN. OHIO
CHRISTOPHER COX CALIFORNIA
BART GORDON TENNESSEE
Room 2125, Rapburn Douse Office Building
NATHAN DEAL GEORGIA
PETER DEUTSCH FLORIDA
STEVE LARGENT. OKL AHOMA
BOBBY RUSH ILLINOIS
Washington, DC 20515-6115
RICHARD BURR NORTH CAROLINA
ANNA J ESHOO CALIFORNIA
BRIAN BILBRAY CALIFORNIA
RONKLINK PENNSYLVANIA
ED WHITFIELD. KENTUCK.
BART STUPAR MICHIGAN
GREG GANSKE OW-
ELIOT : ENGEL NEW YORK
CHARLIE NORWOOD GEORGIA
THOMAS SAWYER OHIO
TOM COBURN OKLAHOMA
ALBERT WYNN MARYLAND
PIC-. LAZIO. NEW YORK
GENE GREEN TEXAS
BARBARA CUBIN WYOMING
CARTHY MISSOURI
JAMES ROGAN CALIFORNIA
DISTRICKLAND OHIO
COHN SHIMKUS LUNCE
DIANA DIGETTE COLORADO
HEATHER WILSON NEVIMENT
THOMASM BARRETT WISCONSIN
IOHNE SHADEGO ARIZONA
MINNESOTA
CHARLES V imp
LOSCAPPE
CALIFORNIA
FOSSELLA NEW
BLUN
MISSO
EDERYAN
ROBERT
SUBCOMMITTEE ON HEALTH AND ENVIRONMENT
DATE:
Wednesday, July 21, 1999
TIME AND PLACE:
10:00 a.m. in Room 2322 Rayburn House Office Building
SUBJECT:
Subcommittee on Health and Environment hearing on H.R. 1070. 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.
WITNESS LIST
PANEL I
Dr. Nancy C. Lee
Director
Division of Cancer Prevention and Control
Centers for Disease Control
4770 Buford Hwy. NE. MS-K64
Atlanta, GA 30341-3717
PANEL II
Ms. Fran Visco
Ms. Susan Braun
President
President and CEO
National Breast Cancer Coalition
The Susan G. Komen Breast Cancer
1707 L Street NW
Foundation
Suite 1060
5005 LBJ Freeway, Suite 370
Washington. DC 20036
Dallas, TX 75244
PANEL II continued
Ms. Carolyn Tapp
Dr. Stanley Klausner
President
56 Amy Drive
Women of Color Breast Cancer Survivors
Sayville, NY 11782
Support Project
8610 Sepulveda Boulevard
Los Angeles, CA 90045
HUMAN
SURVICES
DEPARTMENT OF HEALTH & HUMAN SERVICES
Public Health Service
Centers for Disease Control
and Prevention (CDC)
Atlanta GA 30333
TESTIMONY OF
NANCY C. LEE, M.D.
DIRECTOR
DIVISION OF CANCER PREVENTION AND CONTROL
NATIONAL CENTER FOR CHRONIC DISEASE
PREVENTION AND HEALTH PROMOTION
CENTERS FOR DISEASE CONTROL AND PREVENTION
DEPARTMENT OF HEALTH AND HUMAN SERVICES
before the
SUBCOMMITTEE ON HEALTH AND ENVIRONMENT
COMMITTEE ON COMMERCE
U.S. HOUSE OF REPRESENTATIVES
July 21, 1999
Good Morning. I am Dr. Nancy Lee, Director of the Division of Cancer Prevention and Control
of the National Centers for Chronic Disease Prevention and Health Promotion, Centers for
Disease Control and Prevention (CDC). I am pleased to be here this morning to discuss CDC's
National Breast and Cervical Cancer Early Detection Program.
Recognizing the value of appropriate cancer screening, Congress passed the Breast and Cervical
Cancer Mortality Prevention Act of 1990 (Public Law 101-354). CDC is in the ninth year of the
National Breast and Cervical Cancer Early Detection Program, which brings critical breast and
cervical cancer screening services to underserved women, including older women, women with
low incomes, and women of racial and ethnic minorities. While successes and advances have
been made with the help of this program, challenges still exist.
CDC supports early detection programs in all 50 states, five U.S. territories, the District of
Columbia, and 15 American Indian and Alaska Native organizations. The program establishes,
expands, and improves community-based screening services for women to reduce breast and
cervical cancer mortality. The success of the breast and cervical cancer program depends on
screening, education and outreach, partnership development, case management, and mechanisms
to assure the quality of tests and procedures.
Through September of 1998, more than 2 million screening tests have been provided to over 1.3
million women. That number includes 1 million Pap tests and 950,000 mammograms. Almost
half of these screenings were to minority women, who have traditionally had less access to these
2
services. Over 5,000 women have been diagnosed with breast cancer, more than 30,000 women
were diagnosed with precancerous cervical lesions, and 411 women had invasive cervical cancer.
CDC collects data from all funded programs to monitor and evaluate each program's provision of
clinical services. For each woman enrolled in the program, information is collected on
demographic characteristics, results from mammograms, breast exams, and Pap tests, diagnostic
procedures and outcomes, cancer diagnoses, and for women diagnosed with cancer, whether
treatment was initiated.
The program's success is due in part, from a large network of professionals, coalitions and
national organizations dedicated to the early detection of breast and cervical cancer.
An estimated 27,000 health professionals are involved in providing breast and cervical cancer
screening services to underserved women.
More than 18,000 health educators and outreach workers are educating women on the
importance of early detection and helping them access critical screening and follow-up
services.
More than 7,000 individuals are now members of a national network of coalitions that have
joined together with State health departments in support of this program.
One of CDC's partners in the program, Avon, has raised more than $32 million in additional
dollars to educate women about breast cancer and to provide underserved women with access
to early detection services.
3
There has been a 20 percent increase in screening mammography rates among all women 50
years and older since 1991, when the program was formally established. For both mammograms
and Pap tests, the disparity rates for most of the minority groups have either been eliminated or
reduced. There has been a recent decline in the rate of breast cancer mortality. And while there
remains much to be done, our most recent mortality data from 1996 indicates that we have met
the Healthy People 2000 goal of reduced mortality from breast cancer.
Insuring that all women with abnormal screening results receive adequate follow-up and a
definitive diagnosis is a crucial component of this program. Thus, breast diagnostic services
funded by federal dollars include diagnostic mammography, breast ultrasound, fine needle
aspiration and breast biopsy and for the cervix, colposcopy and colposcopy-directed biopsy.
The legislation that authorizes the National Program does not allow federal resources
appropriated for the program to be used for treatment. However, States are required, under terms
of the grants they receive, to assure that women who are screened and need cancer treatment,
receive care.
Data through March 1998 show that 92 percent of the women diagnosed with breast cancer and
invasive cervical cancer have initiated treatment. The rest refused treatment, have not yet
initiated treatment, or are lost to follow-up. For women diagnosed with breast cancer, data show
a median*of 8 days between the cancer diagnosis and the initiation of treatment.
4
A detailed study of seven state screening programs conducted by Battelle Centers for Public
Health Research and Evaluation and the University of Michigan, funded by the CDC, documents
the innovative approaches that have been implemented to identify and secure resources for
treatment services. The study confirmed what we see in our Program data that arrangements for
treatment were made for almost all clients who received a diagnosis of breast or cervical cancer.
States' efforts to secure treatment for women screened through the Program have been further
documented in a separate study conducted by the Susan G. Komen Breast Cancer Foundation.
State programs and their partners have invested significant amounts of time and effort to develop
systems of care for diagnostic follow-up and treatment; these systems appear to be working.
However, tremendous effort is involved in developing, implementing, and maintaining strategies
and systems for these services. Rarely is there a standardized way that a State, tribe or territory
obtains treatment services women need that are not covered by the program. Efforts typically are
tailored to an individual client's needs and resources.
State programs have developed sophisticated, creative and successful strategies to deal with the
tremendous challenge of payment for cancer treatment. The following are some of the strategies
that are employed by States to secure treatment services for women:
Providers assist eligible clients in applying for Medicaid, Hill Burton funds, or other types of
public assistance.
Clients may be referred to public hospitals, or receive care though hospital community
benefit programs, donated services, or other charitable care.
5
Contracts with screening providers require that agreements with treatment providers be
established before screening commences.
The Program appeals to treatment providers, through state and county medical societies and
professional associations, to offer free or reduced-cost services to program clients.
Case management was identified in the Battelle study as one strategy that could assist programs
in their efforts to ensure the follow-up and treatment of clients. CDC has developed a
comprehensive policy on case management for the program. Increases in CDC's FY 1999
appropriation will be used to expand critical case management services in States that strengthen
the fragile system for securing treatment services. With these funds, each program will enhance
case management activities to assist clients navigate through the system to obtain treatment
services that are not covered by the program.
Both North Carolina and Arkansas have appropriated State resources to the Cancer Control
Programs to provide for cancer diagnostic and treatment services for all state citizens who meet
eligibility criteria. California utilized a one-time allocation of $12.8 million from the Blue Cross
Foundation to create a Breast Cancer Treatment Fund, which paid for treatment during the first
year after diagnosis for any uninsured California women who met eligibility requirements.
Unfortunately, this fund is nearly depleted.
Although States are currently meeting their commitment to help women access treatment
services, several of the programs reviewed in the Battelle study expressed concerns regarding
their ability to expand screening services to more women in need because the systems in place
6
for obtaining charitable treatment are becoming overburdened. These programs stated that as
long as the numbers of cancers diagnosed through the program remain near the current level, the
burden should not be too great or too threatening.
However, increased screening -- which is our goal -- is accompanied by increased numbers of
cancers diagnosed, and many physicians who contract with programs are concerned about
bringing more uninsured patients into their care, because of the need to provide treatment. Lack
of sources for treatment can lead to screening problems in states where screening providers must
have standing treatment referral options in order to screen.
States are finding it more and more challenging to ensure that these women get the treatment
they need. The labor-intensive and piecemeal approach needed to secure treatment services
diverts human and financial resources away from the screening services. The overall goal of this
program is to reduce mortality from breast and cervical cancers, and the success of this effort
hinges on the identification and treatment of early stage cancers and precancers. As they have in
the past, CDC and its state partners will continue to give priority to this critical aspect of the
early detection effort.
Let me relay to you how one woman felt about the program:
I was forty years of age, a recently divorced women with no health insurance and working for
peanuts when I discovered a lump in my breast. It was a very traumatic experience, to say the
least. My fears that accompanied this finding were overwhelming. In my present financial
position, I would have never received the medical attention I needed, if it wasn 't for your
program. I am healthy, the lump was benign. Through this entire ordeal, I was able to focus all
my energies on my medical problem, while your office proficiently attended the bills.
7
CDC's National Breast and Cervical Cancer Early Detection Program does not change whether
or not a women has cancer. However, it can help women by improving their chances of detecting
cancer earlier and getting treatment for it. And by finding and treating precancerous cervical
lesions, the Program prevents thousands of women from ever developing cervical cancer.
Thank you, and I would be happy to answer any questions you may have.
NATIONAL BREAST CANCER COALITION
it grassroots advocacy effort
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) tax: 265-6851 tp:./www.natibcc.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.
Acknowiedgments
Follow-Up and Treatment Issues in
Funding for this study was from the Canters for
Disease Control and Prevention, Division of
the National Breast and Carvical
Cancer Prevention and Control
Cancer Early Detection Program
The study was designed and implemented by a
team of investigators from Battelle 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
Batteile 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
developed and implemented by states to ensure
State finan and
Cornect Count
Screaming
Diagnosis
Transment
that women with abnormal screening results and
Early Detemes
Programs
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
Sampre . -
Sumple - help
- - -
- due -
services organized?
- -
1) - - -
I
What role do coalitions or other partnerships play?
they -
n -
Research Questions
Phases of the Study
Have the methods or tactics being used to identify
Phase : Core set of data on 35 programs
and secure diagnostic and treatment resources
changed with time. and do they differ within the
Phase IL 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)-Tumar
diagnostic and treatment services in a program such
as the NBCCEDP?
registry data and program data from 3 states (CA,
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
Describe
Sales -
program. system, or organization works within its
Crime for
Properms
leaketing
Evens for
everyday setting
Case -
!
I
the Store
Collection
It facuses on a particular problem. issue. or structure
Quannisms
a Madel
which is studied in relationship to the larger program,
be
or
I
Daman Date
Anyword
Company
Collernas
system. or organization
Through
1
Insurance
-
Collection
While describing this relationship, the case study may or
may not lead to conclusions about outcomes
Platinum
I
Devement Date
A case study uses all appropriate sources of
Date
Care Soudy
American 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
Centrailzed 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
sa
13
4
11
4
,
10
7
A total of 192 people were interviewed
Local statf
15
:
:
:
4
4
I
Screening
60
3
$
1
5
7
U
1
provider
Dx or Tx previder
45
7
4
9
1
1
13
,
6
Advisory Board
10
:
I
3
I
:
I
Condition member
Other
4
1
#4
-
TOTAL
192
:7
16
12
:1
:4
49
a
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
Solutions, strategies and networks are tenuous
Women who need and want cancer treatment are
and fragile
receiving it
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
Information lacking for many important issues:
Availability of state or foundation funds to
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
women screened
Several barriers to provider recruitment:
low reimbursement rates (mandated by Congress)
-lack of coverage for all diagnostic follow-up services
Fability for treatment
administrative ourden 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 (as transportation, scrieduling)
and difficult to manage/administer
- cultural barriers (a.g. language barners. fatalistic attitudes,
(ear)
- 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
2151 Strategies for Providing Foilow-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 - Apnil 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 wormi) that is transmitted through contaminated drinking water.
Approximately 1 year after a person is infected. one or more meter-long aduit female
warms 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 (7). 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 4-3 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-Veriag, 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(suppi 7):S4-S6.
6. Stetler HC, Granade TC. Nunez 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 Carvical Cancer Early Cetection 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 resuits 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 Carvical 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 Arbar. 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 P3p 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 40-54 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 professionais 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: Batteile, 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: Newoury 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 marbidity 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.
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 Arlene 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 Arlene and her husband by this situation has
turned a difficult situation into an almost unbearable one. To make it even worse, Arlene
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. Arlene'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.
Received:
7/12/99 10:41AM;
301 657 9341 .> NBCC; Page 2
Jul 12 99 11:06a
Robyn Lipner
301-657-9341
p.2
HEALTH
leb Bush
Robert G. Brooks. MD.
Governor
Secretary
June 22 1992
The Honorable Connie Macx
United States Senate
517 Hart Senate Office Building
Washington DC 20510
Dear Senstor Mack
This letter in response to the May 4th telephone inquiry from Mark Smith to Margo Blake
regarding cancer treatment for women enrolled in Florida's Breast and Carvical Cancer Early
Detection Program (the Program) Thank you for allowing us the opportunity to furnish some
details about the Program.
Florida received its award from the Centers for Disease Control and Prevention (CDC) in late
sum mer 1994 We started operations in nine counties in September 1995 and graw to 20
nties in 1996. The 20 counties are comprised of large urban areas, mid-sized counties and
small rural counties (A map depicting all 20 participating counties IS enclosed.) Population
data show that there are approximately 275.000 women. ages 50-64 in Florida who are under or
uninsured Slightly over 175.000 of these women reside in the 20 participating counties
Since late 1995, CDC grant funds have allowed the Program to provide screening services to
slightly over 10000 eligible women Annually, the participating counties screen approximately
3,500 women or about 2 percent of the eligible population. One hundred thirty women have
been diagnosed with breast or invasive cervical cancer through this Program in Florida. As you
know CDC funds cover reimbursement at the Medicare rate. for breast and cervical screening
services such as Pap smears and mammograms. There are also limited funds for specified
diaf nostic procedure such as colposcopies. biopsies, and breast ultrasounds. The CDC fungs
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
additional CDC grant funds to begin year SIX in October 1999
We are starting to see the strain our providers are experiencing through their support of the
program Before providing case 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
1020 Capital Circle SE . Tallahassee FL 52399-1700
301 657 9341 > NBCC; Page 3
Received:
7/12/99 10:41AM;
301-657-9341
p.3
Jul 12 99 11:07a
Robyn Lipner
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
11) say. the providers are concerned with these Increasing numbers. Some of the providers
nave asked the local program coordinator not 10 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 chents
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
years and since January 1999 diagnosed four more women with breast cancer. Ten
providers who originally agreed to each see one to two clients per year have formeo three
separated groups who have agreed to see one to two clients per group. for a total of three to
5 X clients per year This would not be sufficient coverage if the rate of diagnosing cancer
continues.
CDC has informally conveyed to us that they may award the Florida Program more funds for
breast and cervical acreening services in our next five-year grant cycle that begins this October
Whiler this IS positive news for the many thousands of women at need for these services, we
also pelieve this will have a domino effect on the providers who provide in-kind treatment.
With increased numbers of women screened comes an increase in the numbers of cancers
diagnosed. placing an ever-increasing burden on our already overwhelmed providers of cancer
treatment! Please note these same providers more than likely also donate in-kind services to
other clients diagnosed with cancer or other chronic diseases
So while our information shows that a provider may furnish pro bono treatment for two or three
women with breast or carvical cancer per year. in all likelihood that same provider IS ssked to
donate treatment services for other clients as well. We are deeply indebted to all of these
individuals and institutions for their support of the Program and would like to see them receive
some measure of acknowledgement for their efforts
In summary the Florida Breast and Cervical Cancer Program has provided cancer services to
over 10,000 women at or below the 200 percent poverty level. and found treatment services for
over 130 women through the generosity of local providers in 20 counties As screening
numbers increase. so will the number of women diagnosed with breast or cervical cancer
C.
KONEN
The Susan G. Komen
Breast Cancer Foundation
FOUNDATION
National Headquarters
STATEMENT OF
SUSAN BRAUN
PRESIDENT & CHIEF EXECUTIVE OFFICER
OF
THE SUSAN G. KOMEN BREAST CANCER FOUNDATION
BEFORE THE
SUBCOMMITTEE ON HEALTH AND ENVIRONMENT
COMMITTEE ON COMMERCE
JULY 21, 1999
5005 LBJ Freeway Suite 370 Dallas. Texas 75244 972.855.1600 fax 972.855.1605
Helpline 1.800 I'M AWARE (1.800.462.9273)
Ensuring Breast Cancer Treatment among Uninsured Women
Statement before the House Commerce Committee:
Subcommittee on Health and the Environment
Hearing: July 21, 1999
Good morning Chairman Bilirakis and members of the Committee:
It is an honor to be offered the opportunity to speak before you today about the
pressing issue of treating uninsured women with breast cancer.
My name is Susan Braun, and I am president and chief executive officer of the
Susan G. Komen Breast Cancer Foundation. The Komen Foundation was
established 17 years ago by Nancy Brinker, in honor of her sister, Suzy Komen,
who died of breast cancer at the age of 36. Our mission is to eradicate breast
cancer by advancing research, education, screening, and treatment. To date, we
have raised and spent more than $200 million toward this end. Our network of
106 Affiliates in 43 states and the District of Columbia, and the 35,000 volunteers
that support them are conducting 98 Komen Race for the Cure® events this year.
Last year, through the Race series and other fund-raising vehicles, we raised
nearly $80 million.
It is not to pat ourselves on the back that I share with you these figures. Rather,
it is to help illustrate to you the reach of the Komen Foundation and to
demonstrate that "grass roots" is a way of being for us, not a mere cliché.
Further, it is to establish the level of trust that we have earned with the public --
trust that allows them to put a large sum of money in our hands with the
assurance that it will be spent wisely in pursuit of our mission to eradicate breast
cancer. We cherish that trust and work tirelessly to remain worthy.
Komen affiliates work at the local level to build the public awareness of breast
cancer and to establish the best settings possible for education and early
detection. At a national level, we continue to establish programs to support our
affiliates in these endeavors. In addition, we are (according to the Institute of
Medicine) the largest private funder of research dedicated exclusively to breast
cancer. Last year we funded 79 basic, clinical, and translational research grants,
with grantees selected through a novel and well-respected blinded peer-review
program. In addition we funded population-specific studies and post-doctoral
fellows from our national grants fund for a total of over $17 million. Our affiliates
granted another $25 million to local programs.
Again, I describe this program not as a means of touting the successes of the
Komen Foundation. Rather, I wish to underscore also that we are quite
experienced as funders of novel and strong programs. We investigate our areas
of spending in significant depth, ensuring that we are serving the public trust that
has been placed in us. It is with this backdrop that we began to study the issue
of treatment for underserved women over a year ago.
Statement of the Problem:
An estimated 175,000 new cases of breast cancer will be diagnosed in 1999 and
43,300 women will die of the disease. Despite promising new prevention
treatments, finding and treating cancers in their earliest stage remains our most
effective way of reducing the morbidity and mortality associated with this disease.
The good news is that an increasing number of women are receiving
mammograms. In 1995, over 80 percent of women 40 years of age and over
reported ever having had a mammogram and about 60 percent reported having
had a mammogram and clinical breast exam within the past 2 years. The
National Breast and Cervical Cancer Early Detection Program (NBCCEDP),
operated by the Centers for Disease Control and Prevention (CDC), has played a
critical role in this achievement, ensuring that low income, underinsured and
uninsured women are not left out of the success story. The NBCCEDP has
2
provided almost three-quarters of a million mammograms to low-income,
underinsured and uninsured women.
However, while the past decade has been witness to significant increases in the
utilization of early detection services for breast and cervical cancer, we are now
challenged to ensure access to necessary diagnostic and treatment services for
women whose mammogram or Pap test yields suspicious findings.
In working to assess how to best go about ensuring accurate diagnosis and
appropriate treatment of breast cancer, we have established the following basic
premises:
Women diagnosed with breast cancer must be treated if they so choose,
irrespective of their ability to pay.
The quality of treatment they receive should be the highest possible.
The time between diagnosis and initiation of treatment must be as short as
possible.
Care should be coordinated, ensuring the best care by the correct specialist.
Care must not be short-term only; follow-up for at least five years is required.
Upon establishing these central tenets, we then explored the critical questions
that needed to be answered in order to provide timely, coordinated,
comprehensive, and high-quality treatment to uninsured women. This led to four
key questions:
3
Question One: What is the magnitude of need?
Our very general estimates indicated that the potential magnitude of need is
significant. As you can see in the chart attached to the following page, there are
an estimated 1,000 women screened through the BCCEDP program each year
who may require treatment assistance. In addition, there are an estimated
20,000 women who are eligible for BCCEDP but are not presently being
screened, who are likely to develop breast cancer, and have no access to this
program and what it offers in terms of diagnostic services and case management
for further care.
4
ESTIMATED ANNUAL NUMBER OF WOMEN IN THE US IN NEED OF
FINANCIAL ASSISTANCE FOR THE TREATMENT OF BREAST CANCER
# of women ages 35-64 in the U.S. within screening range,
51,000,000
ineligible (by age only) for Medicare
X
.16
Percent uninsured
8,160,000
# of uninsured women in the U.S., ages 35-64
X
.0029
Annual diagnosis rate, ages 35-64
# of uninsured women, ages 35-64, potentially
23,664
diagnosed with breast cancer each year
23,664
# of uninsured women, ages 35-64, potentially diagnosed
23,664
with breast cancer each year
X 15
Percent of women reached by
Percent of women not
X .85
the NBCCEDP
reached by the NBCCEDP
3,550
Potential number screened
Potential number not
20,114
and diagnosed annually by
screened/diagnosed through
NBCCEDP
NBCCEDP
X .05
Percent not initiating
Percent not initiating
X 1.00
treatment
treatment
178
Number of women with no
Number of women with no
20,114
treatment
screening or treatment
3,372
Potential number screened
Potential number not
20,114
and diagnosed annually by
screened/diagnosed through
NBCCEDP who will initiate
NBCCEDP
treatment
X 25
Estimated percent enrolled in
NBCCEDP paying out-of-
pocket
843
Number of women screened
and diagnosed through
NBCCEDP who may need
treatment assistance
(excluding the 5% not
initiating treatment)
1,021
Estimated number of
Estimated number of
20,114
women needing treatment
women needing financial
assistance (women not
assistance for breast
currently getting treatment
cancer treatment
or those who are receiving
treatment but may need
additional financial
assistance) [843 + 178]
Notes: This model is based on simple estimates to begin the process of determining the magnitude of need
and where the need exists. The model is for breast cancer only. The number of unemployed is likely an
overstatement of the true NBCCEDP reach; thus total number of treatment may be a high estimate.
5
Question Two: In which populations does the need for treatment
assistance lie?
The need for treatment assistance for women diagnosed with breast cancer lies
primarily among the uninsured, medically needy, and/or underserved. In
addition, insured women who have lost their coverage or have reached a lifetime
maximum, particularly those being treated for a recurrence of their breast cancer,
can be in need. Women with healthcare coverage but with a policy that excludes
some forms of treatment may also be at need.
Question Three: What can be done to meet the needs for treatment for
those screened and diagnosed through the BCCCEDP and those not
reached at all through the program?
Reaching women who have been screened and diagnosed through the BCCEDP
with treatment assistance is more straightforward than reaching those who are
not. Those who have been diagnosed within the program can be assisted by
case managers, who will help find available services or a program that can
provide special national, state, or local funds. Eight states have legislated breast
cancer treatment funds, and local programs (such as "The Bridge" in Dallas) also
exist. Pro-bono care is provided in many communities. In the case of failure of
these funding options, federal assistance may be required.
To reach those women who are eligible for but unscreened by the BCCEDP,
more outreach must be undertaken to ensure detection of breast cancer as early
as possible to improve the likelihood of a favorable outcome. At present, due to
lack of interaction with the healthcare system, these women may not be
diagnosed at all, or may appear in emergency rooms or public clinics with
advanced disease. For this group to be assured that early screening and
diagnosis will be achieved, CDC program funding will require regular increases.
6
Question 4: What are potential models for meeting the needs of those
diagnosed?
Recognizing the growing need for additional information about the provision of
breast cancer diagnostic and treatment services among women who have no
means of support for such services, and in order to guide our actions as a funder
of treatment assistance programs, the Susan G. Komen Breast Cancer
Foundation initiated a study. It covered current strategies being used by
communities across the country to address the growing challenge of ensuring
diagnostic and treatment services. This study, which 1 am now introducing into
the record, revealed:
Women are receiving treatment. Both the CDC and the Komen
Foundation studies found that treatment was initiated for the vast majority
of women who received a diagnosis of breast cancer. While imperfect and
needing further resources, the system has been providing treatment for
most women who need and want it.
Patient navigator and case management services are critical in ensuring
follow-up diagnostic and treatment services for women with suspicious
screening findings. Case managers determine patient eligibility for
assistance programs, including Medicaid and Medicare, identify and
negotiate alternative sources of donated care, identify and coordinate
provision of support service needs, such as transportation and child care,
and assist women in understanding and navigating an increasingly
complex health care system. Such services are critical even in areas that
have treatment funds and will continue to be necessary if states have an
option to provide for treatment services under Medicaid.
Provision of services reflects a delicate web of relationships and linkages
across public and private organizations and across the federal, state, and
7
local levels. Local communities are meeting the challenge of ensuring
treatment services through the dedication of local health care and
community professionals who donate services.
The need for early detection services exceeds current levels of support.
While the NBCCEDP has reached more than 1.3 million women with
screening services, this represents only 12-15 percent of the women
eligible for services in each state. Currently, state awards under the
NBCCEDP range from $1.0 million to $5.0 million annually based on state
population, the number of uninsured and underinsured low-income
women, state capacity, and other factors. The need for early detection
services outweighs current levels of support. Some partnerships between
public and private organizations have been established to address the
need for educational outreach and screening. Examples include the
ENCOREplus program in St. Joseph, Missouri, which addresses barriers
women face to health education and access to education and detection
services and the Montana Department of Public Health and Human
Services screening program.
Innovative partnerships are being formed to address local treatment
needs. Our study identified ten treatment funds established specifically to
meet the needs of low-income uninsured and underinsured women.
These included three privately funded (California Treatment Fund, Orange
County Susan G. Komen Breast Cancer Foundation, and South Dakota
Women's Cancer Network) and seven state-funded programs (Arkansas,
Georgia, Rhode Island, Maryland, North Carolina, South Carolina, West
Virginia). These initiatives varied considerably in sources of support,
structure, services covered, size and other important factors. They
combined the unique local strengths of public and private sector partners
and all were tailored to local circumstances. These local solutions
8
generally are the result of partnerships between the government and
private sector.
Actions for Success
Efforts to meet the challenge of ensuring early detection and treatment for breast
and cervical cancer over the past decade have yielded both successes and
lessons. Many women are being diagnosed and treated, case management is
critical to ensuring this treatment, the current local infrastructure for ensuring
treatment reflects a delicate web of services and relationships, current funding is
insufficient to fully address the magnitude of need, and innovative public/private
partnerships hold the promise of meeting these challenges for the long-term
future.
Potential models for meeting the needs of those being diagnosed include:
Community treatment models: Expand case management and public/private
funds to strengthen and expand existing models.
State treatment plans, which currently exist in some states: Model state
legislation for treatment programs with federal demonstration project monies.
Establish a Ryan White type program, which is used for HIV treatment.
Use or enhance existing provisions with respect to state medical necessity
provisions under Medicaid.
Establish a Medicare adjunct program with a separate funding base.
Other comprehensive programs.
9
We realize that the purpose of today's hearing is to discuss H.R. 1070, a bill to
amend Title XIX of the Social Security Act to provide medical assistance for
women screened and found to have breast or cervical cancer under the
BCCEDP program. We highly credit Congressman Lazio and Congresswoman
Eshoo for championing this plan and being true allies in the fight against breast
cancer.
As stated previously, Medicaid assistance is one of several options for dealing
with the needs of uninsured, low income women who are treated for breast
cancer. Contrary to some accounts we have heard, the Komen Foundation is not
opposed to this legislation. We are concerned, however, that any treatment
initiative provides a comprehensive and effective solution and reaches those
most in need of assistance. Therefore, if serious consideration is to be given to
this alternative, as opposed to others, we urge consideration of the following
points:
Medicaid participation is optional in the proposed bill. States with limited
funds in their Medicaid program may be reluctant to cover care for people
who would otherwise be ineligible.
Medicaid programs may be adverse to participate in an optional program that
is diagnosis-specific (that is, only targeted for one disease). Although the
mission of the Komen Foundation is focused only on breast cancer, we are
aware of the needs of many people with other diseases who are covered by
Medicaid.
Medicaid varies considerably from state to state. Some states can afford
more care than others can. An optional program that requires an initial
investment on the part of states may be "picked up" only by the wealthier
states. This may contribute to the variation in how a woman may be treated
10
in one state compared to another.
Eligibility for a Medicaid program may require women to spend down their
resources before they qualify, and it is important that the financial status of
patients undergoing treatment not be jeopardized.
Medicaid eligibility only for women who are screened through the BCCEDP
program does not account for the 85% of women who are eligible for the
program but not reached. A certain percentage of these women, who may
not be in touch with any healthcare services at all, will nonetheless develop
breast cancer.
Follow-up for breast cancer is standardly provided for at least five years
following treatment. Any program that is medically sound must also provide
for follow up.
It is critical that any proposed treatment strategy address the full audience and
the long-term issues associated with breast cancer treatment. Treatment of
breast cancer is required by all who have the disease and wish to be treated,
irrespective of where they were screened or where their disease was diagnosed.
Women treated must be followed up to ensure the best possible outcomes. This
issue is of grave concern to all involved with breast cancer. We must ensure a
comprehensive solution, lest we walk away prematurely, with the notion that we
have "solved the problem." We are indeed running quickly up this very important
ladder; let us be certain that we have it propped against the appropriate building.
Thank you very much for your time and attention.
11