RYAN WHITE CARE ACT RE-AUTHORIZATION 2005   REFLECTIONS ON BUSH ADMINISTRATION’S 5 PRINCIPLES FOR RE-AUTHORIZING THE RYAN WHITE CARE ACT   BACKGROUND.  Initially enacted in 1990 to respond to the needs of individuals and families living with HIV/AIDS, the Ryan White CARE Act is re-authorized every 5 years.  The next re-authorization is scheduled for September 2005.  If not re-authorized then, the Act would continue under its current programmatic structure and funding levels.   ADVANCE ADVOCACY POSITIONS.  HIV/AIDS advocacy interests have been seeking dialogue with Congressional entities for well over a year on approaches to re-authorization.  Key concerns include the following: (1) continuing spread of the epidemic and increased numbers of people living with HIV/AIDS; (2) unequal per capita funding across jurisdictions in the U.S.; (3) chronic under-funding of Ryan White; (4) a  “southern strategy” that seeks to increase funding for emerging and underserved areas of the country by shifting funds away from states with older, established systems of HIV/AIDS services rather than vigorously seeking additional funds to respond to emerging need; (5) politicizing of HIV Prevention approaches; (6) shifting the Administration focus to “medicalization” of HIV/AIDS programs; (7) counting HIV cases as well as AIDS cases as a basis for allocating federal funding; (8) proposals for  equitably allocating federal HIV/AIDS funds that would penalize states augmenting Ryan White funding by contributing their own funds for HIV/AIDS programs.   GAO REPORT.  On June 23, 2005 the Government Accounting Office (GAO) presented to Congress an assessment of the Ryan White CARE Act.  The report focuses extensively on the impact of current funding approaches, noting significant differences in per capita funding among jurisdictions, and arguing that various “grandfathering” provisions enable EMA’s* to continue receiving Title I funding, even when they may no longer meet eligibility thresholds.   The report provides arguments for changing the funding formula in ways that are likely to destabilize older, established programs developed in regions where the epidemic first appeared.  The report’s findings, however, focus only on Title I (EMA’s) and Title II (States) of the Act and do not reflect the impact of funding provided under other Titles.  A more comprehensive look at funding provided under all Ryan White Titles may be desirable in addressing equity concerns.   RELEASE OF ADMINISTRATION PRINCIPLES FOR RE-AUTHORIZATION.  On July 28, 2005 the Bush Administration, through HHS Secretary Mike Leavitt, issued 5 Principles for Ryan White Re-authorization.  These include a number of sub-principles targeting specific provisions of the current legislation.  Prior to the release of the Administration Principles, there had been no specific focus for advocacy and negotiations on re-authorization.  Following release, the process of re-authorization is now expected to move forward. __________   * Eligible Metropolitan Areas CONCERNS RELATING TO ADMINISTRATION PRINCIPLES.  The Administration has stated that “stemming the spread of HIV/AIDS” is a top priority and that the Ryan White CARE Act is “essential to the fight against this terrible disease here at home.”   We concur.  However, those who have reviewed the recently-articulated Administration Principles for Ryan White Re-Authorization find that they pose serious challenges to the future effectiveness of Ryan White-funded programs.   Advocacy interests and funding recipients have weighed in rapidly on the Administration Principles.  New York State and New York City, with older, established, service systems, have expressed extreme concern that the Principles, while appearing to advocate fairness in funding allocation and to make timely adjustments for keeping pace with the evolution of the epidemic, actually portend a crisis threatening the continuity of HIV/AIDS services in those parts of the country that have been impacted most heavily and have responded  the longest.   REFLECTIONS ON ADMINISTRATION PRINCIPLES.  The 5 Administration Principles and their sub-principles appear below in bold-face type, followed by observations based on comments issued by New York State, New York City’s Mayor and Planning Council, the New York AIDS Coalition (NYAC), and some Ryan White CARE Networks in New York State.   1) SERVE THE NEEDIEST FIRST * Base future funding on a “severity of need” for core services index (SNCSI) that would take into account HIV incidence, levels of poverty, availability of other resources including local, state, federal and private programs.   COMMENT: Creating a formula for fair and equitable distribution of funds is important. As proposed, however, this principle would penalize state & local jurisdictions (including NYS & NYC) now contributing their own funds to HIV/AIDS services and would reduce overall funding to the strongest systems.  New York, which contributes more than any other state in responding to the epidemic, would be seriously penalized by this change in Ryan White funding policy.  In addition, this policy would be a strong disincentive discouraging New York and other states from contributing their own funds to support HIV/AIDS services.   COMMENT: Basing the SNCSI index on HIV incidence rather than prevalence recognizes only new cases entering the system rather than all persons living with HIV/AIDS (living cases) continuing to require care.  Effective HIV Prevention reduces the incidence of new cases -- indicating success; jurisdictions should not be penalized with reduction in funding when they are successful, especially since services continue to be needed by all living HIV/AIDS cases -- not just new ones.  Until there is a cure, funding should address the needs of existing as well as new cases.  If the severity of need index is used as an adjustment factor, it should take into account those variables that make providing care more difficult.  These factors could include but not be limited to: (1) a poverty index; (2) an index that reflects numbers of non-English-speaking people; (3) an index that reflects the percent of the population addicted to substances; (4) the percent of homeless.   2) FOCUS ON LIFE-SAVING AND LIFE-EXTENDING SERVICES * Establish a set of core medical services; require that 75% of Ryan White funds be used for core medical services.    COMMENT:  This Principle ignores the critical importance of non-medical supportive services in a comprehensive care plan; medical success often depends on addressing first order needs including housing, nutrition, transportation to care, mental health care, treatment for chemical dependency, HIV/AIDS treatment adherence, and case management.  Decisions regarding services provided should be made at the local level, in recognition of community-identified need.   * Maintain a federal list of ADAP core medications.   COMMENT: Access to the full scope of HIV medications is critical to sustaining health for those living with HIV/AIDS.  Insufficient funding is the main reason some states have been unable to maintain adequate formularies or provide assistance to most low-income people living with HIV/AIDS.  Establishing a federal formulary could be used by insurers to cap allowable drugs across the board.  This would harm people in states which maintain comprehensive formularies as a result of their own contribution of additional funding; flexibility should be maintained so that Ryan White funding can provide basic services everywhere and effectively complement other resources of limited availability.   3) INCREASE PREVENTION EFFORTS * Require states to implement routine voluntary HIV testing in public facilities and encourage private health care providers to do the same.   COMMENT: Increased emphasis on HIV Prevention is an important tool in slowing the spread of HIV/AIDS.  NYS has implemented measures to streamline HIV Testing and supports measures to make it more readily available and accessible.   4) INCREASE ACCOUNTABILITY * Maintain current requirement that states submit HIV data by FY 2007.   COMMENT: Agree.  NYS implemented name-based HIV reporting in 2000.  Procedures for reporting HIV & AIDS cases should be consistent across the country to avoid distortion in measuring the impact of the epidemic.  The GAO Report data suggests that the ratio of reported HIV/AIDS cases varies by the maturity of the HIV reporting system.  The funding formula should provide adjustments to the HIV/AIDS ratio for states with immature HIV reporting systems.   * Require grantees to report on system and client-level data and progress to ensure accurate counts of those served.   COMMENT: Agree.   * Ryan White funds to be used as a last resort for HIV-positive individuals unable to obtain medical care through other means.   COMMENT:  Ryan White has always included payer-of-last-resort provisions; these should be revised, however, to recognize that third-party reimbursement often fails to cover full costs of care.  Ryan White should be able to cover services when  barriers limit access to existing services for which the person is eligible (e.g., perhaps the VA should have to reimburse states for Ryan White-paid services in cases where VA services were not reasonably accessible).   * Require state and local care delivery coordination.   COMMENT: Agree.   * Eliminate “double counting” of HIV/AIDS cases between EMA’s and states.   COMMENT:  The current funding formula does not actually “double count” but gives partial credit in statewide counts for cases in EMA’s located within a state.  The formula was developed to acknowledge the complexity and expense of serving individuals in high-impact urban areas where co-morbidities and poverty factors are disproportionate.  NYS would suffer a 56% reduction in its Title II base funding under the proposed change; 18 states with EMA’s would lose $76 million in Title II base funding.  Future Ryan White funding provisions must take into account diversity and complexity of community experience.   This principle suggests that fair and equitable distribution of funds can be achieved by examining Title I and Title II formula awards only, thus disregarding the important role of other timeless, including Title III, Title IV, and Part F, in the apportionment of Ryan White resources.  Any meaningful assessment of equity in terms of the distribution of CARE Act resources must include funding from all titles in all jurisdictions.  Variations in Ryan White funding cannot be addressed unless all titles of the Act are considered.   * Eliminate current “hold- harmless” provisions in implementing funding reductions for Title I & Title II.   COMMENT:  Major shifts in funding ostensibly intended to address nationwide disparities in services should be accomplished without compromising services in jurisdictions that lose funding.  Reform of the hold-harmless provision must be done in a way that minimizes harm to needed systems of care and ensures opportunity to adjust over time to resultant reductions in funding levels.  The need is for more funding, not robbing Peter to pay Paul.   5) INCREASE FLEXIBILITY * Unspent Title I and Title II funds will revert to the HHS Secretary for discretionary reprogramming to state ADAP programs with greatest need.   COMMENT:  Prudent contract management frequently results in some degree of under-spending.  NYS uses such funds to augment essential services and activities, including ADAP.  While if would be acceptable to direct a percentage of unspent funds to a pool to address areas most in need, a portion of unspent funds should remain in the state for ADAP.   * Allow Planning Councils to serve as voluntary and advisory bodies to mayors.   COMMENT: Elimination of Planning Councils’ mandated roles and responsibilities to set service priorities and allocate resources seriously weakens the voice of those most experienced in coping with the HIV/AIDS epidemic – individuals living with HIV/AIDS.  This move to “streamline” the decision-making process may once again marginalize those with most at stake in a comprehensive response to HIV/AIDS.                                                                                                                ~~~~~~~~~~~~~~~~~~~~     RYAN WHITE RE-AUTHORIZATION:  VALUES FROM THE FIELD   ~~EVERYONE COUNTS.  THEREFORE, EVERYONE LIVING WITH HIV/AIDS SHOULD BE COUNTED TO DETERMINE FUNDING LEVELS AND ALLOCATION.    ~~WHERE YOU LIVE SHOULD NOT IMPACT HOW LONG YOU LIVE.   ~~HIV/AIDS EXISTS IN A SOCIAL MILIEU. EXCESSIVE EMPHASIS ON MEDICAL TREATMENT ALONE, IN THE ABSENCE OF A NETWORK OF SUPPORTIVE SERVICES, IS A FORMULA FOR FAILURE.   ~~IN THE CAMPAIGN AGAINST HIV/AIDS, REALISTIC FUNDING, NOT COST-SHIFTING, IS THE OPTIMUM WAY TO RESPOND TO UNDER-SERVED REGIONS AND UNMET NEEDS.                                 For Additional Information Contact:   Stephen E. Waldron, Network Coordinator CENTRAL NEW YORK HIV CARE NETWORK 5700 Commons Park Drive         East Syracuse, New York 13057 Phone: (315) 472-8099          FAX: (315) 472-8033          sewaldron@cnyhsa.com   Lynn Varricchio, Network Coordinator FINGER LAKES HIV CARE NETWORK 1150 University Avenue          Rochester, New York 14607-1647 Phone:  (585) 461-3520, Ext. 106          FAX:  (585) 461-0097          lynn@flhsa.org