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

NASTAD's recommendations to maintain program infrastructure focus on: supportive services, hold harmless provisions within Title II, communities of color, hepatitis/HIV co-infection, and AIDS Education and Training Centers.

Supportive Services Within the CARE Act

The CARE Act re-enforces the importance of both medical and supportive services in providing comprehensive care and treatment to people living with HIV/AIDS. As defined in Section 2612b of the CARE Act, support services may include case management, transportation assistance, benefits counseling, housing referrals and supportive services for women, children and families. The CARE Act states that support services must "facilitate or enhance the delivery, continuity, or benefits of health services."⁸

The patchwork nature of funding for HIV-related services makes supportive services all the more important. Many individuals need the assistance of a case manager to sort through the various private and public programs through which they might be receiving care. The supportive services provided through the CARE Act are essential to ensuring access to and retention in appropriate care and treatment.

• RECOMMENDATION #8 -- (Legislative) Maintain flexibility to allow CARE Act funds to be used in the provision of services, both medical and support, based on locally determined needs within each state.

Hold Harmless Provisions Within Title II of the CARE Act

The CARE Act currently has two provisions that ensure Title II jurisdictions will receive a level of funding similar or equal to previous years under their formula grants. These provisions are typically referred to as "hold harmless" provisions and apply to Title II base grants and the ADAP earmark, as well as the overall Title II award (including base, ADAP earmark, ADAP supplemental grants, Emerging Communities, and Minority AIDS Initiative funding).

Hold harmless provisions limit shifts in Title II base and ADAP earmark funding that otherwise could help address funding disparities that exist from state to state. However, with limited funding, as well as two consecutive years of cuts to the Title II base, these disparities cannot be corrected via major shifts in Title II resources without impacting existing services in jurisdictions that would lose funding.

• RECOMMENDATION #9 -- Revise Title II hold harmless provisions.
• RECOMMENDATION #9a -- (Legislative) Revise the standalone Title II base and ADAP earmark hold harmless provision⁹ to reflect a 1.5% loss each year (based on FY2005 funding levels) with a maximum possible loss of 7.5% over a five-year period, or 92.5%. This would continue to apply to the Title II base and the ADAP earmark.

• RECOMMENDATION #9b -- (Legislative) Repeal the overall Title II hold harmless provision.¹⁰ The provision has resulted in losses to the pool of available money for critical ADAP Supplemental grants.

Communities of Color

Since 1999, Minority AIDS Initiative (MAI) funds have been earmarked to expand or improve CARE Act medical and support-service capacity in communities of color. Under Title II of the CARE Act, MAI funds are used to support education and outreach services specifically targeting racial and ethnic minority populations impacted by HIV. NASTAD believes that these funds, while inadequately funded and distributed within Title II at $7 million, are valuable in helping states link underserved minority populations to critical care and treatment services, including ADAP, and other publicly funded HIV care and treatment programs. While NASTAD supports these education and outreach services, states should have the flexibility to utilize these funds for other care and treatment and support services that target racial and ethnic minority populations impacted by HIV -- including the provision of medications through ADAP when resources are scarce.

• RECOMMENDATION #10a -- (Legislative) Authorizing the Title II portion of the Minority AIDS Initiative.

• RECOMMENDATION #10b -- (Legislative) Provide additional resources to states to enhance outreach and education efforts in linking minority populations to services.

• RECOMMENDATION #10C -- (Administrative) Distribute Title II MAI funds to the 30 states with the highest percentage of persons of color to avoid states receiving awards that are too small to be effective.

HIV/HCV and HIV/HBV Co-Infection

Increasingly, state public health HIV/AIDS programs are assuming responsibility for viral hepatitis prevention and care activities, due to its similarities with HIV/AIDS in disease transmission and populations affected. In recent years, enhanced hepatitis outreach and awareness efforts have resulted in many persons living with HIV/AIDS learning of their co-infection with hepatitis B (HBV) or hepatitis C (HCV). It is estimated that one-third of persons living with HIV are coinfected with HCV and that 6-10% of persons with HIV are infected with hepatitis B virus (HBV).¹¹ The risk of hepatitis-related cirrhosis and other liver-related complications is higher in those who are co-infected with HIV and HCV.

State public health programs and CARE Act grantees remain challenged with how to effectively manage and respond to HIV/HCV and HIV/HBV co-infection. CARE Act resources can be used for HCV and HBV treatments for individuals who are also HIV-infected. Inadequate funding of ADAPs, however, has limited access to HCV treatments for co-infected individuals, and state Medicaid restrictions threaten access to HCV treatments for many others. CARE Act resources can be used for hepatitis A and B vaccines as well as HBV treatments.

• RECOMMENDATION #11a -- (Legislative) Maintain flexibility for all CARE Act grantees in the use of CARE Act resources to address HIV/HCV and HIV/HBV co-infection. Providers funded by all titles of the CARE Act must have the flexibility to adequately and appropriately treat their co-infected clients by addressing, to the extent determined possible by the capacity and resources of the provider agency/program, both their HIV and HCV/HBV diseases.

• RECOMMENDATION #11b -- (Legislative) Require AIDS Education and Training Centers (AETCs) to collaborate with CDC's Prevention Training Centers to ensure that HIV care providers are adequately trained in prevention and treatment of viral hepatitis as approximately one-third of individuals with HIV are co-infected with HCV and 6-10% are coinfected with HBV. Without increasing provider knowledge and skills of HCV co-infection, many clinicians will remain uneducated and their HIV patients who are at risk of or infected with HCV will remain undiagnosed or uninformed.

• RECOMMENDATION #11c -- (Administrative) Instruct HRSA to develop an agency-wide strategic plan, including the identification of necessary resources, for addressing HIV/HCV and HIV/HBV co-infection and HCV mono-infection.

AIDS Education and Training Centers (AETCs)¹²

The AETCs' goal is to "increase the number of health care providers who are educated and motivated to counsel, diagnose, treat and medically manage individuals with HIV infection and to help prevent high risk behaviors that lead to HIV transmission."¹³ In this time of diminishing resources, programs that provide direct benefit to individuals living with HIV should be given priority within the AETC programs, as is already the case in the remainder of the CARE Act. This includes well trained and culturally competent providers. Research has shown that that HIV-positive African Americans under the care of a white physician delayed effective treatment almost four months longer than their counterparts with African-American physicians.¹⁴

An historical lack of coordination continues to shadow the regional AETCs. State AIDS Directors repeatedly struggle with duplicative training programs, difficulty accessing AETC provider trainings and inconsistent competence of the regional AETC training staff. These deficits undermine the existing vigorous statewide care continuums as well as reduce the likelihood that AETCs reach their program goals.

• RECOMMENDATION #12a -- (Legislative) Prioritize AETC funding for HIV-specific training to primary care providers. Significant attention should be given to assisting white primary care providers to effectively serve patients of color.

• RECOMMENDATION #12b -- (Administrative) Require AETCs to develop and enact Memorandums of Agreement (MOA) with State AIDS Directors that specify how both entities will collaborate. Overall coordination prevents duplication of training services and ensures a consistent statewide dissemination of information.

• RECOMMENDATION #12c -- (Administrative) Include a service commitment in an HIV specific clinic, community health center or minority health center as one requirement of the loan forgiveness/scholarship program for health care providers. Loan forgiveness programs exist at both the federal and state levels. More attention should be given to making HIV programs a priority. Patients of color continue to face barriers to access when seeking HIV/AIDS services, and increasing the number of health care providers of color may aid in improving the accessibility of HIV/AIDS resources for minority communities.