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

Theme 1: Strengthening State Program Capacity

1) Enhance the availability of ADAP resources for persons in need living with HIV/AIDS in all areas of the nation by potentially tapping all titles of the CARE Act and revisions to the ADAP Supplemental Treatment Drug Grants.

2) Address inequities in per-capita CARE Act funding among states by revising the Title II base Emerging Communities Supplemental Grants to provide additional Title II resources to states in need.

3) Reduce Title I eligibility to 1,500 estimated living AIDS cases during the previous five years.

4) Increase the minimum Title II award to $500,000 and provide Guam with a minimum award of $200,000 by eliminating the provision that stipulates a minimum award for states with fewer than 90 estimated living AIDS cases.

5) Use of HIV Cases in Title II Formula Awards:

1. Include living HIV cases, in addition to living AIDS cases, in the Title II base and ADAP earmark formulas phased-in over a 10-year period.

2. Include CDC-certified HIV case data from all states in the formula, regardless of the type of reporting system, that meet reasonable data quality and completeness standards.

3. Require CDC to get input from stakeholders, including states, when developing the methodology to estimate HIV cases for states with immature data systems.

4. Oppose any legislative mandate requiring states to shift from a code-based to a name-based HIV reporting system.

6) Revise the drug purchasing options available to CARE Act drug assistance entities:

1. Extend the Federal Ceiling Price to all CARE Act funded medication programs, including ADAPs.

2. Share the Unit Rebate Amount generated by CMS on a quarterly basis with ADAPs utilizing the 340B rebate option in the same manner as it is shared with state Medicaid programs.

3. Require all CARE Act grantees with pharmacy assistance programs to coordinate purchasing efforts within states.

4. Establish a Center for Medicare and Medicaid Services (CMS)/Health Resources and Services Administration (HRSA) Work Group to oversee and implement policies that affect both the Medicaid Rebate and the 340B programs.

7) Increase authorizing levels for all components of the CARE Act, including the Title II base and ADAP earmark.

Theme 2: Maintaining Program Infrastructure

8) 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.

9) Revise Title II hold harmless provisions:

1. Revise the stand-alone Title II base and ADAP earmark hold harmless provision 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%.

2. Repeal the overall Title II hold harmless provision.

10) Minority AIDS Initiative (MAI):

1. Authorize the Title II portion of the MAI.

2. Provide additional resources to states to enhance outreach and education efforts in linking minority populations to services.

3. 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.

11) HIV/HCV and HIV/HBV Co-Infection:

1. Maintain flexibility for all CARE Act grantees in the use of CARE Act resources to address HIV/HCV and HIV/HBV co-infection.

2. Require AIDS Education and Training Centers (AETCs) to collaborate with the 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 co-infected with HBV.

3. 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.

12) AIDS Education and Training Centers:

1. Prioritize AETC funding for HIV specific training to primary care providers.

2. Require AETCs to enter into Memorandums of Agreement with state AIDS programs that specify how both entities will collaborate.

3. 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.

Theme 3: CARE Act Simplification and Flexibility

13) Reduce the administrative burden placed upon states.

1. Make CARE Act Title I and Title II planning, application and grant cycles concurrent.

2. Keep "Off-year" reporting requirements of the biennial application process to a minimum.

3. Reduce or keep to a minimum unfunded mandates for activities such as determining unmet need, quality management, comprehensive planning and Statewide Coordinated Statement of Need (SCSN).

4. Provide additional funding for time-intensive requirements, such as determination of unmet need.

5. Eliminate many of the unnecessary reporting requirements placed upon Title II grantees.

14) Continue State Match and Maintenance of Effort Requirements:

1. Maintain flexibility of allowable costs for state match and maintenance of effort requirements.

2. Eliminate match requirement for ADAP Supplemental Treatment Grant awards.

15) Eliminate the Women, Infant, Children and Youth (WICY) proportional spending requirement from Titles I and II.

16) Unmet Need:

1. Eliminate the legislative requirement to quantify unmet need to identify the number of persons who know their status and are not in care.

2. Short of elimination, maintain flexibility in methodologies for determining unmet need as well as data sources used to estimate need.

3. Provide funding to states for the resource intensive process of determining unmet need.

17) Revise the quality management requirements of the CARE Act.

1. Maintain states' flexibility to choose the quality management strategies that work effectively in their jurisdiction.

2. Account for costs associated with quality management activities separately from administrative costs, as quality management is an integral part of service delivery.

3. Require HRSA to provide states with technical assistance to develop quality management systems for support services.

4. Provide funding to states to develop and maintain effective quality management strategies.

18) Prevention and Care Integration:

1. Provide states with more flexibility for incorporation of Early Intervention Services and Prevention for Positives programs into CARE Act programs.

2. Recognize HIV prevention as a standard of care for persons living with HIV/AIDS.

3. Encourage and provide technical assistance to providers to adopt standards based on incorporating HIV prevention into the medical care of persons living with HIV/AIDS.

Theme 4: Enhancing State's Ability to Coordinate HIV/AID Health Systems

19) Revise coordination and planning requirements of the CARE Act.

1. Eliminate the Statewide Coordinated Statement of Need requirement in the CARE Act.

2. Require HRSA to consult with each state and other grantees within a jurisdiction prior to approving new grants.

3. Require documentation of collaborative efforts with the state in grant applications or progress reports for all CARE Act grantees, including AETCs and dental reimbursement programs.

4. Eliminate the administrative requirement to submit a separate Comprehensive Plan from the Title II grant application.

5. Provide states with maximum flexibility to determine the appropriate mechanism and timing of coordination efforts among the various CARE Act programs.

20) Revise the payer of last resort requirement in the CARE Act.

1. Provide explicit allowance for the CARE Act programs to wrap-around Medicaid and Medicare to help support payment of co-pays and other out- of-pocket expenses that provide necessary health care services to persons living with HIV/AIDS.

2. Enable states the flexibility to serve clients who have coverage for services through other payers that are also covered under the CARE Act if the services covered elsewhere are difficult to access (e.g., location of services is too far to enable the client access to the services).

3. Require Medicaid and Medicare to provide eligibility data to ADAPs to ensure the payer of last resort requirements are met.

4. Require Medicaid to reimburse states through a Medicaid Administrative Reimbursement process for staff time devoted to Medicaid coordination activities.

5. List the programs that are included with respect to the payer of last resort provision, including those of the Veterans' Administration, Medicaid, Medicare, Indian Health Services (IHS), State Children's Health Insurance Programs, and other federal, state and local programs, including other pharmacy benefits programs.

21) Revise the Title III provision of the CARE Act.

1. Prioritize new planning or Title III grants to underserved states that do not have access to Title I funding, and as a secondary priority, underserved areas of states outside of existing Eligible Metropolitan Areas (EMAs).

2. Require HRSA to consult with each state and other grantees within a particular jurisdiction prior to determining new Title III projects within a particular area.

3. Strengthen and enforce the provision of HIV services provided by community health centers that receive federal, but not CARE Act, support.

4. Require HRSA to allow representatives from states in monitoring visits at Title III agencies and provide copies of subsequent reports to the states upon request.

Theme 5: CARE Act Mandates

22) 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.

23) Oppose establishment of an ADAP core formulary requirement, a nationwide Federal Poverty Level eligibility standard or other mandates regarding the operation of ADAP programs.

24) Oppose any new mandates on consumer or provider participation in Title II consortia and/or ADAP advisory committee, or planning body makeup and/or process.

25) 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.

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

27) Fund perinatal prevention activities through CDC and not redirection of CARE Act funding.

28) Fund partner notification and referral services through CDC and not redirection of CARE Act funding.

29) Oppose any legislative mandate requiring state health departments to report clients to the criminal justice system.

30) Oppose any legislative mandate, including percentage set-asides, that require CARE Act grantees to incorporate abstinence-only education messages into CARE Act funded programs.

1. Support comprehensive sexual education programs funded through CDC and other funding streams.

Theme 6: CARE Act Accountability

31) Support existing accountability processes through which states monitor their subgrantees.

1. Oppose any legislative mandates prescribing a one-size-fits-all set of standard for states in monitoring their subgrantees.

2. Require HRSA's Office of Performance Review to simplify additional requests to states for performance reviews of subgrantees.

32) Require HRSA to give a comprehensive accounting of their administrative tap on the CARE Act to Congress annually.

33) Require HRSA to provide CARE Act grantees and Congress with a comprehensive accounting of how CARE Act funded research is being translated into practice.

34) Exempt the CARE Act from HHS's evaluation tap.