Testimony to the House/Senate CARE ACT Reauthorization Working Group

Ms. Lesley Stewart
U.S. Senate Committee on Health, Education, Labor, and Pensions Senator Michael B. Enzi (R-WY)—Chairman

Dear Ms. Stewart:

On behalf of tens of thousands of Illinoisans living with HIV/AIDS, the AIDS Foundation of Chicago (AFC) thanks you and members of the bipartisan, bicameral CARE Act reauthorization working group for advancing a thoughtful legislative proposal to respond to the needs of low-income people with HIV/AIDS in the U.S.

In particular, we thank you for retaining the basic structure of the CARE Act, which has proved an effective—albeit under-funded—mechanism to deliver essential HIV/AIDS services. We applaud provisions to base funding distribution in part on a proxy of HIV case counts until mature name-based HIV surveillance systems have been established in all states and jurisdictions across the country. This provision will protect Illinois and other jurisdictions transitioning from a code-based to a name-based HIV surveillance system from artificial and unjust funding reductions.

AFC’s specific recommendations follow:

Community Input: AFC supports provisions mandating grantees to engage in community planning activities that involve people living with HIV/AIDS and other stakeholders. We support provisions mandating community planning for Tier 1 jurisdictions. We also support provisions requiring Title III grantees to garner community input into the design and implementation of their projects.

Recommendation: Congress should require all Title I-IV grantees to garner input from community members, especially people living with HIV/AIDS, in the design and implementation of their programs. In addition, Tier 2 grantees should be required to conduct community planning activities.

Administrative Caps: AFC supports provisions designed to ensure that scarce CARE Act dollars be prioritized for direct client services. However, we fear that administrative caps set at 10% will hinder the ability of grantees and their delegate agencies to adequately implement, monitor, and conduct service planning activities. Tier 1 grantees, for example, will struggle to conduct all their requirements including community planning activities within a 10% administrative cap. Title II grantees will struggle with new lead-agency coordination functions that will be difficult to achieve within these spending limits. Delegate agencies already struggle to perform increased data-entry, evaluation, monitoring, and planning activities within the administrative cap.

Recommendation: Congress should allow up to an 11% administrative cap for grantees and delegate agencies.

Funding for Rural States: AFC supports the Title II formula provision designed to increase Title II funding for states without Tier 1 or Tier 2 grantees. However, we remain concerned that this mechanism may not adequately respond to the needs of rural states. AFC, joining a coalition of organizations and advocates, supports the creation of a new Title II supplemental grants program designed to increase funding for states with 50% or greater of their HIV-positive populations residing outside Tier 1 or Tier 2 communities.

Recommendation: Create a new Title II supplemental grants program for states with greater than 50% of their HIV-positive populations residing outside of Tier 1 or Tier 2 communities. Include language establishing the appropriation of new and ongoing funding for this program, with an initial appropriation of $70 million.

Core Services: AFC strongly opposes provisions requiring Title I-IV grantees to designate no less than 75% of their awards to core services as these decisions should be made at the local level and in consideration of the availability of other services, such as Medicaid. There appears to be no demonstrable reason why 75% has been set as the target for core services, and most alarming, legislative authors have yet to define which services would qualify under this core-services requirement.

Recommendation: Legislative sponsors should consider eliminating this arbitrary target for core services. In addition, legislation should broadly define core services as including no less than medical care, laboratory services, medications, case management, mental health, substance abuse treatment services, dental, home health, hospice, family planning/obstetrics, transportation, housing, food/nutrition, and legal services.

Severity of Need Index: Despite the work of a national committee to recommend a mechanism to measure “severity of need” for use in funding distribution formulas, this concept remains undeveloped and untested. Congress should work to ensure that a potentially disruptive and harmful mechanism is not introduced into the CARE Act.

Recommendation: Congress should not include provisions regarding “severity of need” mechanisms in this reauthorization, reserving inclusion of such provisions for future reauthorization legislation. If provisions to measure and apply “severity of need” remain in the 2006 reauthorization bill, Congress should ensure that such mechanisms are independently tested and reviewed before they are utilized to disperse CARE Act funds.

Coordination with Medicare Part D: The introduction of Medicare Part D has created much confusion and disruption for disabled workers and retirees living with HIV/AIDS. For Medicare-eligible clients on AIDS Drug Assistance Programs (ADAP), a decision by the Centers for Medicare and Medicaid (CMS) to prohibit even state ADAP expenditures from counting towards beneficiaries’ out-of-pocket spending limits (known as “true out-of-pocket,” or TrOOP) has proved especially disruptive. Legislation establishing that state ADAP expenditures do in fact count as TrOOP would help ADAPs maximize their scare budgets and help clients obtain more comprehensive coverage. Such a provision might also serve as an incentive for states to increase their investments in ADAP.

Recommendation: Include a provision establishing that state ADAP expenditures on behalf of Medicare Part D beneficiaries count toward TrOOP.

Thank you for the opportunity to provide input into the reauthorization of the Ryan White CARE Act.

Sincerely,

David Ernesto Munar
Associate Director

CARE Act Action Center