Recommendations to Guide the 2005 Reauthorization of the Ryan White CARE Act

In general, NASTAD strongly opposes any legislative mandate that requires states to pass legislation or enact regulations in order to receive their Title II funding award or any portion thereof. This would include withholding state awards until states pass mandatory newborn testing, if the status of the mother is unknown; requiring states to switch from an "opt-in" to an "opt-out" approach for testing pregnant women; requiring states to shift from code-based to name-based HIV reporting; and requiring state health departments to turn over clients to the criminal justice system.

NASTAD strongly opposes mandatory set-asides for specific populations or types of services. This would include the existing Women, Infants, Children and Youth set-aside, as well as, any other specific population. The CARE Act should not include a mandated set of services that is more limited than current law; percentage set-asides for specific services, such as hepatitis C or nutrition services; or limitations on the amount of funding than can be allocated for an eligible service.

The CARE Act has a large number of mandates, including determination of unmet need, quality management, the SCSN, and comprehensive planning all of which are unfunded mandates that place additional administrative burden on states. These mandates compel state health departments to engage in costly and time-consuming processes in order to fulfill the requirements of each mandate. NASTAD supports the elimination of unfunded mandates that would then allow state health departments to allocate their financial and human resources toward critical HIV/AIDS services. NASTAD strongly opposes any new unfunded mandates, whether they are legislative or administrative. This would include new client level data reporting requirements without the provision of appropriate resources to carry out the activity.

NASTAD's recommendations regarding CARE Act mandates focus on: Core set of medical services, ADAP core formulary considerations, participatory planning, partner counseling and referral services, and abstinence/prevention education.

Core Set of Medical Services

Due to funding disparities, lack of sufficient resources available for the CARE Act, and the availability of services through other public health payers, CARE Act services differ within and between states. NASTAD recognizes the importance of providing a common standard of care available to all CARE Act clients regardless of residency. At the same time, establishing a set of core medical services is troubling for several reasons. First, establishing a set of core medical services undermines the importance of support services in maintaining a person in care and adherent to their drug regimen. Second, establishing a core will establish a ceiling not a floor whereby resources will be allocated only for this newly defined set of services, ignoring the necessity of support and other vital services. Furthermore, the needs of people living with HIV/AIDS has shifted since the beginning of the epidemic and will continue to do so. Mandating a core set of services could make it difficult to meet the changing needs of individuals living with HIV/AIDS. Third, establishing of core set of services could lead to a redistribution of dollars. Many people living with HIV/AIDS could find themselves without access to services they had previously received. Fourth, establishing a core set of services ignores the complex payer mix existing in states that have non-CARE Act providers providing much of the core.

• RECOMMENDATION #22 -- (Legislative) Oppose a mandated set of core services that are more limited than current law, or percentage set-asides for specific services, or limitations on the amount of funding that can be allocated for an eligible service.

ADAP Core Formulary

Medications available on ADAP formularies vary by state. For example, in FY2003, drugs available on state formularies ranged from the 18 FDA-approved antiretrovirals (ARVs) to approximately 400 drugs to treat HIV and related conditions. This significant range of drug availability raises concern about formulary differences among the states and variations in services depending on where individuals live.

NASTAD recognizes the need to address such disparities and the importance of establishing a standard of care available to all ADAP clients regardless of residency. However, there is also the concern that establishing a core formulary may actually reduce access by creating a formulary ceiling for states with more expansive formularies. States that make large general revenue contributions to their ADAPs will have no incentive to do so if a floor is set.

In addition, requiring a core formulary for ADAPs may cause more fiscal strain for ADAPs with lean formularies. If a core formulary were defined to include the PHS recommended drugs for prevention and treatment of opportunistic infections (OIs), this may force these and other ADAPs, in the absence of additional funding, to reduce enrollment in order to allow access to these additional drugs. These states will also be forced to put all their Title II base dollars into their ADAP in order to bring their ADAP up to the floor.

• RECOMMENDATION #23 -- (Legislative) Oppose establishment of an ADAP core formulary requirement, a nationwide Federal Poverty Level eligibility standard, or other mandates regarding the operation of ADAP programs. NASTAD, through its position to redesign the ADAP Supplemental Grant Awards, believes states will provide access to therapies consistent with Public Health Service (PHS) guidelines (either through ADAP or through other sources), including all antiretroviral medications and recommended "A1" drugs to treat OIs.

Participatory Planning

Persons living with HIV/AIDS play an essential role in planning and implementing CARE Act programs to successfully serve target populations. While the CARE Act mandates that HIV-positive individuals make up 33% of Title I Planning Councils, states have the flexibility to determine the composition of Title II consortia and ADAP advisory committees to best fit individual community needs.

States have been successful in meeting program requirements without mandates for consumer or provider participation in Title II and ADAP planning bodies. Such mandates place additional administrative burden on states by requiring them to engage in costly and time-consuming processes in order to fulfill them. Scare CARE Act resources should be prioritized for services, not to create more planning infrastructure.

• RECOMMENDATION #24 -- (Legislative) Oppose any new mandates on consumer or provider participation in Title II consortia and/or ADAP advisory committees or planning body makeup and/or processes. States are committed to participatory planning but must have the flexibility to determine the makeup and functions of consortia and/or ADAP advisory committees.

Federal Grants to Reduce Perinatal Transmission of HIV

Perinatally acquired AIDS cases have decreased dramatically due, in large part, to HIV testing and subsequent treatment among greater numbers of pregnant women and their subsequent treatment. In 2003, the CDC reported only 152 new cases of perinatally transmitted AIDS. This represents an 84% decline from a high of 954 new AIDS cases in 1992. Only three states account for over 50% of all new perinatal cases reported to the CDC -- New York (48), Florida (20), and California (14). Twenty-two states reported no pediatric AIDS cases. Perinatal initiatives developed by state and local health departments have contributed to the significant decline in perinatally acquired AIDS cases from the peak in the early 1990s.

In 1996, Congress authorized through Section 2625 of the CARE Act $10 million for grants to support counseling, testing, and outreach to pregnant women and infants. Priority in funding was given to states with the highest prevalence of perinatal transmission cases. In 2000, Congress authorized an additional $20 million in new funds for grants supporting counseling, testing, outreach and treatment of pregnant women and infants. One of the goals of the CARE Act Amendments of 2000 was to provide a financial incentive to states to adopt laws or regulations that mandate the testing of newborns if their mother's HIV status is unknown at the time of delivery. No state has adopted such a law since the federal legislation was enacted. Currently, New York and Connecticut are the only states with such laws. Congress has yet to provide resources for these grants.

• RECOMMENDATION #25 -- (Legislative) Oppose any legislative mandate that redirects or withholds funds from states, through the Title II base award, based upon a state's passage of a mandatory newborn testing law or regulation.

• RECOMMENDATION #26 -- (Legislative) Oppose any legislative mandate requiring states to switch from an "opt-in" to an "opt-out" approach for testing pregnant women.

• RECOMMENDATION #27 -- (Legislative) Fund perinatal prevention activities through CDC and not redirection of CARE Act funding.

Partner Counseling and Referral Services (PCRS)

Health departments use partner counseling and referral services as one tool to identify HIV-positive individuals and ensure their linkage to medical, support, and prevention services. Research has found PCRS to be a cost-effective strategy for identifying HIV infected persons unaware of their serostatus. The CARE Act allows Titles I and II to conduct early intervention services (EIS), including risk reduction counseling and testing. Previously, early intervention activities were only allowed among Title III and IV grantees. The 2000 CARE Act amendments also added grants to states for carrying out programs providing PCRS.²⁴ While the CARE Act authorized $30 million for the PCRS grants, no money has ever been provided to states through this grant mechanism.

Currently, all states and territories conduct PCRS as a requirement of their prevention cooperative agreement with the Centers for Disease Control and Prevention. PCRS includes three basic elements: 1) Seeking the names of partners who may be at risk for infection (partner elicitation), 2) Locating partners and notifying them of their risk (partner notification), and 3) Providing HIV testing and risk reduction counseling to partners (partner counseling). PCRS is not limited to the time of initial diagnosis but is offered continuously to provide on-going support for HIV-positive persons related to serostatus disclosure and to ensure that both positive persons and their partners have access to prevention services. Partner notification, a key public health strategy to fight communicable disease, lies within the authority of health departments as part of their mission to protect public health.

These grants were never funded and are duplicative of what states are already doing in the area of PCRS. The CARE Act is designed to provide care and treatment to people living with HIV and as such, does not include PCRS in its primary focus. PCRS should continue to be funded primarily by CDC cooperative agreements with state health departments. Funding PCRS through the CARE Act diverts resources away from care and treatment services.

• RECOMMENDATION #28 -- Fund partner notification and referral services through CDC and not redirection of CARE Act funding.

• RECOMMENDATION #29 -- (Legislative) Oppose any legislative mandate requiring state health departments to report clients to the criminal justice system.

Abstinence Prevention Education in CARE Act Services

The CARE Act was designed to assure comprehensive health and support services to individuals living with HIV/AIDS. Federal agencies, health departments and community-based organizations understand the importance of close linkages between HIV prevention and care services to ensure that individuals learn of their HIV status and receive referrals to appropriate services. There is a movement toward mandating abstinence within some federal programs. One-third of all U.S. global bilateral prevention funds must go towards abstinence-until-marriage programs. Abstinence-only programs do not provide information about contraception, safe sex or disease prevention methods. Furthermore, abstinence-only-until-marriage messages have no meaning for gay and lesbian people, for whom marriage is illegal in most parts of the country.

• RECOMMENDATION #30 -- (Legislative) Oppose any legislative mandate, including percentage set-asides, that require CARE Act grantees to incorporate abstinence-only education messages into CARE Act funded programs and other funding streams.
  • RECOMMENDATION #30a -- Support comprehensive sexual education programs funded through CDC.