Access to Cancer Treatment for Uninsured Women The Breast by fzk93926


									                  Access to Cancer Treatment for Uninsured Women:
    The Breast and Cervical Cancer Prevention and Treatment Act (BCCPTA) of 2000

                                  Kathleen A. Maloy, JD, PhD
                                   Kyle Anne Kenney, MPH
                                       Sarah Blake, MA
                                     Michelle Proser, MPP

                               The George Washington University
                            Center for Health Services Research and Policy

Presented at “Women Working to Make a Difference,” IWPR’s Seventh International Women’s
                        Policy Research Conference, June 2003


The BCCPTA established a new Medicaid option for states to extend coverage to uninsured
women under 65 who have been screened and diagnosed with breast or cervical cancer through
the CDC Title XV screening program. The George Washington University received funding
from CDC and CMS to examine BCCPTA implementation in 16 states. Analysis focused on (1)
design of Medicaid expansions, (2) collaboration between Medicaid and Title XV; and (3) initial
experiences in implementing BCCPTA. Study findings provide essential first step toward
conducting impact research to evaluate effectiveness of BCCPTA, as a pathway from prevention
program to publicly-funded insurance, in improving ability of uninsured women to secure earlier
and better treatment with improved outcomes.


        On October 24, 2000, the Breast and Cervical Cancer Prevention and Treatment Act of
2000 (BCCPTA) was signed into law. This law established a new state coverage option under
Medicaid that permits states to extend Medicaid to any uninsured woman under 65 who is
screened and diagnosed with breast and or cervical cancer through the National Breast and
Cervical Cancer Early Detection Program (NBCCEDP, or Title XV program) funded by the
Centers for Disease Control and Prevention (CDC). The creation of this coverage option is
groundbreaking as an effort to use population-wide public health screening programs as
pathways for publicly funded health insurance. Because state implementation of the new law is
in an early stage, little is known about states’ experiences in adopting this new Medicaid
coverage and how women’s access to breast and cervical cancer treatment might be affected or

         The BCCPTA established certain minimum program standards and also affords states
critical options in designing and administering their programs. The eligibility category created
by the law encompasses women who (1) have been screened for and found in need of treatment
for breast or cervical cancer, including pre-cancerous conditions, through the CDC Title XV
program; (2) are under age 65; and (3) are uninsured (i.e., without “creditable coverage” as
defined in the Act) and not otherwise eligible for Medicaid. There is no income eligibility test
under the Act; instead, the lack of creditable coverage becomes the critical factor, a unique
model in federal Medicaid policy. States also may adopt a “presumptive eligibility” (i.e.,
temporary eligibility pending authorization by Medicaid agency) option in order to facilitate
enrollment and access to care. Currently, twenty-two states have been approved to provide
presumptive eligibility for BCCPTA Medicaid cases.

        Women who are enrolled in BCCPTA Medicaid are entitled to all necessary medical
assistance, including treatment for their cancer or precancerous conditions as well as non-cancer
related conditions or problems. Eligibility continues as long as the need for cancer/precancer
treatment exists, as determined by treating providers.

        As with so many Medicaid options, states have the flexibility to make a variety of pivotal
choices in adopting and administering their BCCPTA coverage. Each choice ultimately may
affect the program’s speed and effectiveness in reaching and enrolling uninsured women with
breast or cervical cancer, linking women to effective sources of treatment, and ultimately, cancer
survival rates.

        The most important eligibility choice may be how states elect to specify which women
are considered to have been screened and diagnosed under the CDC Title XV program as
required by the Act. The design of a state’s BCCPTA-related screening network in effect defines
the parameters within which an uninsured woman can pursue screening and diagnostic services,
and which providers refer patients for BCCPTA Medicaid coverage. At a minimum, states
adopting this new program must use Screening Option 1, which defines being screened through
the program as screens conducted by screening providers using Title XV funds. Additionally,
federal Medicaid guidance offers two more liberal options:

        Under Option 2, women are considered screened under the program if the screening
service was rendered by a provider and/or an entity funded at least in part by CDC Title XV
funds, the service fell within the scope of a grant, sub-grant or contract under that state program
and the program grantee has elected to report such activities as Title XV activities.

        Under Option 3, states may agree to include providers who do not receive any Title XV
funding as part of the network of screening providers who can refer women for BCCPTA
Medicaid coverage. For example, if an individual physician or community health center screens
and diagnoses a woman with a breast or cervical cancer condition without any use of Title XV
funds, or arrangement with the Title XV agency to receive any funding, an Option 3 state could
include these providers' screening activities as part of its overall screening program for
expanding access to BCCPTA Medicaid coverage.

       To date, 49 states (excluding only Massachusetts and Oklahoma) have implemented the
Breast and Cervical Cancer Prevention and Treatment coverage under Medicaid. Twenty states
have chosen Screening Option 2 while seven states chose Options 2 and 3, and four states chose
Option 3.

Study Design

         The CDC and the Centers for Medicare and Medicaid Services (CMS) engaged the GWU
Center for Health Services Research and Policy to conduct an 18-month study to understand the
initial efforts by 16 states to implement BCCPTA. The goal of this study was to provide early
insights on (1) states’ strategies for implementing BCCPTA; (2) how women are getting enrolled
in Medicaid and BCCPTA, and (3) whether BCCPTA seems to be improving access to treatment
for women diagnosed with breast or cervical cancer or precancerous conditions. The findings
will also serve the important function of providing early feedback to federal and state officials
for continuous quality improvement. In addition, they will provide the essential first step toward
designing and conducting impact evaluation research that will evaluate the effectiveness of
BCCPTA in improving the ability of uninsured women with breast or cervical cancer to secure
earlier and better treatment, and thereby, to experience improved outcomes, and assess whether
using prevention programs as a pathway for publicly-funded coverage is an effective way to
promote access to care and improve health outcomes.

        The GWU research used a case study approach in 16 selected states to understand: (1)
how states are taking advantage of this new Medicaid option; (2) how state Medicaid agencies
and Title XV programs are collaborating on implementation; (3) whether and how the BCCTPA
implementation is affecting the operation of CDC Title XV programs; (4) what procedures are
involved for enrolling women in Medicaid; and (5) the states’ experiences to date in
implementing BCCPTA. Case study methods were used to examine sixteen states that were
among the first to implement BCCPTA. Data collection, conducted during July through
December 2002, included structured interviews with key stakeholders, including state Medicaid
officials, Title XV program directors, community/advocacy organizations, and document review.
Data collection and analysis focused on (1) designs of states’ Medicaid expansions, (2)
collaboration between Medicaid and Title XV officials; (3) development of BCCPTA Medicaid

enrollment procedures; (4) effect of BCCTPA implementation on Title XV agencies; and (5)
states’ experiences in implementing BCCPTA.

       The primary method of data collection involved interviews with a range of state
stakeholders including state Medicaid officials, Title XV grantees, and representatives from
provider and community organizations. Several key issues guided the interviews and analysis
including: (1) the screening options chosen by the states; (2) the key challenges encountered in
implementation; (3) the factors facilitating collaboration between the state Medicaid agencies
and Title XV grantees; (4) whether existing NBCCEDP programs and staff have been affected;
(5) how BCCPTA Medicaid eligibility is determined; and (6) whether access to treatment
through Medicaid has been expanded for uninsured women.

       Sixteen states were selected based on when they implemented BCCPTA (i.e., early
implementers were chosen to maximize level of experience with BCCPTA issues), what
screening option they chose, whether American Indian/Alaska Native tribal grantees were
involved, and the relative size of the state and the Medicaid and Title XV programs. Study states
included: Alabama, Alaska, Arizona, California, Connecticut, Georgia, Illinois, Iowa, Michigan,
Missouri, New Hampshire, Rhode Island, South Dakota, Utah, Washington, and West Virginia.

Principal Findings In Brief

Title XV and Title XIX agencies worked well together to adopt BCCPTA and on relatively
equal footing, although Title XV agencies generally took the lead on implementation and worked
through questions with CDC and CMS; no MOUs in 10 states.

States reported having notable confusion about the meaning of the screening options in
particular as well as about other aspects of implementation. But, confusion about screening
options did not appear to constrain states’ decisions about implementation

States considered/selected screening options largely based on design and scope of their existing
Title XV NBCCEDP screening network, and any desire or plans to expand access to BCCPTA
coverage by expanding the network of screening providers. Moreover, states generally decided
what their screening network would be and then determined which option seemed to “fit” their
choice. There was considerable variability in how states interpreted/applied options.

States’ experiences with enrollment and expenditures for BCCPTA coverage varied - it is
difficult to generalize about these experiences. Six states reported greater than anticipated
enrollment; four states were able to estimate costs and enrollment accurately. Four states had no
cost data. States’ used a range of techniques to estimate enrollment and cost projections for
BCCPTA coverage, although it is too early to tell whether certain techniques produced more
accurate projections.

Variability in BCCPTA Medicaid eligibility procedures, E.g. (1) whether first day of eligibility
for BCCPTA Medicaid is diagnosis date or Medicaid application date; (2) how retroactive
eligibility and presumptive eligibility are determined; (3) whether standardized BCCPTA
verification/eligibility forms are used; and (4) if women must visit Medicaid office to complete

their BCCPTA Medicaid application. Implications of this variability are uncertain but there is no
early evidence of any effect on women’s ability to get prompt/accurate eligibility determination.
Procedures for ongoing eligibility review and redetermination also vary but may present more
complex challenges as ongoing eligibility is a function of woman’s ongoing need for treatment.

Impact on many Title XV agencies reportedly greater than expected due to additional
responsibilities beyond their CDC-mandated responsibilities in two main areas: (1) tracking
women in terms of initial Medicaid eligibility and ongoing eligibility redetermination, and (2)
following women to and through treatment. Extent to which Title XV agencies have taken on
    new responsibilities seems to be a function of several factors including: (1) the extent of the
    agencies’ existing/customary case management activities; (2) whether the state asked the
    agency to perform these duties; and (3) whether the agency could voluntarily assume new

Substantial variability exists regarding states’ capacities for data collection and monitoring.
Quality/availability of data needed to assess effect of BCCPTA may need to be determined on a
state-by-state basis. This uncertainty about data capacity/quality likely to present future
    challenges for designing a data-based impact evaluation.

While severe state budget crises are the backdrop, and did impact the selection of screening
options in several states due to concerns about expanding screening network and covering more
women than financially feasible, no states reported any current concerns about containing
BCCPTA costs or directives to restrict BCCPTA coverage. Support for BCCPTA reportedly
remains strong and initial costs appear negligible (1% of total Medicaid budget. Ongoing budget
concerns could ultimately impact states’ approach to policy/program decisions about duration of
coverage and scope of coverage (e.g., tamoxifen therapy for five years).

        The study findings point to success in enrolling women in Medicaid and thereby
improving access to treatment for formerly uninsured women diagnosed with breast or cervical
cancer or precancer. The findings also indicate that, despite some initial confusion, states were
able to implement BCCPTA as an effective pathway to insurance for low-income women.

       Moving forward, this research provides the necessary methodological foundation for the
design and execution of a formal impact evaluation by GWU that will measure the effect of
BCCPTA Medicaid coverage on health outcomes for women with breast or cervical cancer


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