AFC Comments on Ryan White CARE Act Reauthorization

August 5, 2004

CHACHSPT
c/o HRSA - HIV/AIDS Bureau - Office of Policy and Program Development
Attn: Shelley Gordon
Parklawn Building, Room 7-18
5600 Fishers Lane
Rockville, MD 20857

Re: Response to July 2, 2004, Federal Register Notice Concerning the Ryan White CARE Act Reauthorization

To the CDC/HRSA AIDS Advisory Committee:

On behalf of the thousands of AIDS affected residents across Illinois, thank you for giving the AIDS Foundation of Chicago the opportunity to submit written testimony regarding reauthorization of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.

Founded by a group of dedicated community leaders in 1985, the AIDS Foundation of Chicago (AFC) is Illinois' principal advocate for people living with HIV/AIDS and the organizations that serve them. In addition to advocating for sound HIV public policy, AFC brings together service providers to develop systems of care and prevention that meet the needs of those living with HIV/AIDS. AFC is responsible for the administration, ongoing development, and evaluation of an HIV case-management system funded by multiple state and federal funding streams, including Titles I and II of the CARE Act. A national model of coordinated, centralized care, AFC's case management system encompasses a network of 52 agencies; employs 166 case managers to serve more than 6,000 men, women, and children living with HIV; and includes funding for direct emergency assistance, transportation, and short-term rental assistance. The AIDS Foundation of Chicago has also been funded since 1991 by the Illinois Department of Public Health (IDPH) to serve as the lead agency for the Cook County HIV Care Consortium established under Title II of the Ryan White CARE Act. In this capacity, AFC is responsible for allocating and managing funds for HIV/AIDS service delivery in Cook County, and subcontracting with 22 separate agencies. Services funded include primary medical care, case management, substance abuse treatment, mental health, childcare, food, legal services, and housing. In December of 2000, AFC was asked by IDPH to serve as lead agency for the Collar County HIV Care Consortium established under Title II of the Ryan White CARE Act. As lead agency, AFC is managing Title II funds for HIV/AIDS service delivery in the collar counties and subcontracting with 11 agencies.

The Ryan White CARE Act is a safety net that has been slowly unraveling, due to insufficient funding and growing numbers of people living with HIV/AIDS. Dependent upon annual appropriations, the CARE Act is a fragile yet effective program for some of the most medically, economically, and socially vulnerable individuals in the United States. Because primary medical care is critical to managing HIV disease, we strongly support the May 2004 Institute of Medicine report, "Public Financing and Delivery of Care, Securing the Legacy of Ryan White" ("IOM Report"), that calls for a new federal entitlement for low-income people living with HIV/AIDS. Within the framework of a new entitlement, the CARE Act can—and must—provide equally essential wrap-around social services and support for people living with HIV/AIDS.

Until such time as the new entitlement program is enacted and available, we urge the Committee to use the IOM Report to inform its CARE Act reauthorization deliberations. In particular, we believe the expert panel that authored the report makes a compelling argument for federally funded HIV/AIDS-related programs to provide low-income and uninsured HIV-positive people with uninterrupted access to a minimum of medical care and other essential services. Doing so achieves maximum cost effectiveness for government funders, promotes the best health outcomes for service recipients, and is in the best interest of the public's health.

AFC's responses to the Committee's specific questions are noted below:

1. The use of HIV case reporting and service utilization data to determine eligibility under Title I and funding under Titles I and II of the CARE Act

We applaud Secretary Thompson's determination that HIV reporting data not be used this year for the purposes of determining formula funding under Titles I and II of the CARE Act. While we support the use of formulas that takes into account both living AIDS and HIV case data sets, we strongly suggest that HIV data not be used until HIV reporting systems nationally have improved and can be certified as meeting a minimum standard of accuracy and completeness. In addition, we strongly recommend that the CDC adopt a recommendation from the Institute of Medicine's November 2003 report, "Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act," to work closely with states, including Illinois, that report HIV cases by unique identifier in order to develop mechanisms to accept and integrate their HIV case reports into the national registry. By working closely with all states, regardless of their reporting systems, CDC can help improve HIV reporting systems and ensure the availability of accurate and unduplicated HIV case data.

In addition, IOM authors suggest that simply utilizing HIV case data to determine funding distribution under the CARE Act may not necessarily ensure that scarce government resources target areas of most acute need. While HIV case data will help CARE Act administrators understand the epidemic and its trends, IOM authors recommend other indicators including the number of uninsured and poverty data be considered as part of funding distribution formulas.

2. Changes to the existing Titles I and II hold harmless provisions

The existing hold harmless provisions, included in the 2000 reauthorization, were established to avert rapid destabilization of existing healthcare systems in those EMAs and states where formula awards are affected by decreasing AIDS case rates. The current provisions allow for shifting of resources to meet changing needs while still supporting and sustaining systems of care. We recommend that the existing hold harmless provisions remain intact.

CARE Act resources sustain public health infrastructures that would otherwise be unprepared to handle the complex medical and social service needs of people living with HIV/AIDS. Significant fluctuations in funding place extraordinary burdens on healthcare systems, providers, and most egregiously on service consumers. Maintaining stability within CARE Act funded services is critical to increasing and maintaining positive health outcomes of those served. To further guarantee stability in funding, the reauthorized CARE Act should consider creating hold harmless provisions for supplemental awards to Title I EMAs.

3. Changes in the percentages of the Title I grant awarded by formula and competitively

Title I funding allows for the development of systems of HIV/AIDS care in metropolitan areas highly affected by the epidemic. The existing formulas should be maintained to ensure the most heavily impacted cities have necessary resources to provide services and care.

The competitive funding awarded through Title I serves as an additional resource for EMAs to meet the specific needs of their communities. The scoring for the supplemental awards should give priority to those EMAs with higher case rates, to ensure adequate resources are available to meet the greater needs in those areas. Increased transparency in the funding and decision-making process would allow EMAs to better structure their proposals and plan for future funding cycles.

Unfortunately, the annual cycle of competitive awards has resulted in significant funding fluctuations for EMAs from year to year. By awarding supplemental funds on a multi-year basis while allowing for adjustments based on annual appropriations, EMAs could plan for more consistent services and avoid cyclic disruptions in service provision. In addition, a jurisdiction's needs assessments, service priorities, and service plans do not change significantly year to year, yet the requirement that jurisdictions draft and submit annual supplemental funding proposals requires them to expend significant time and resources. Moving to a multi-year application process would minimize disruptions and serve as a most efficient use of planning resources.

4. Comparability and portability of the AIDS Drug Assistance Program

Woeful under-funding combined with increasing utilization has ignited waves of waiting lists and formulary restrictions in AIDS Drug Assistance Programs (ADAP) across the country. ADAPs are administered and governed at the state level and, consequently, each program's formulary, eligibility, and distribution mechanisms vary. These differences are a result of many issues, including the size of the state's AIDS population, the richness or inadequacy of other related public benefits like Medicaid, state financial contributions, the cost of pharmaceuticals, and insufficient funding at the federal level.

While the reauthorization process cannot address all of these factors, it can increase the purchasing power of ADAPs by allowing combined purchasing for all states at the lowest rate negotiated by the United States government, the Department of Defense rate. This would ensure that resources are being spent most effectively. Allowing ADAPs to purchase drugs at the lowest rate possible allows those resources to stretch further and serve more individuals.

In the absence of a federal entitlement program to provide anti-HIV treatment for uninsured and low-income people with HIV, the AIDS Drug Assistance Program remains among the only options for such individuals. State control over ADAPs has resulted in several successful federal-state partnerships, but has also produced examples of under-funded and neglected programs. The meager drug formularies in some states mean that the U.S. Public Health Service's treatment guidelines for people living with HIV/AIDS are not met. The reauthorized CARE Act should encourage states to establish a minimum formulary that meets standard treatment guidelines and includes protease inhibitors. States should be both urged to prioritize their federal ADAP resources toward those medications and be provided incentives to expand formularies with other necessary medications. Such incentives might include an increased formula award. The reauthorized CARE Act could also encourage a minimum eligibility threshold and provide similar incentives to those states that exceed it.

5. Institute of Medicine report on: ``Public Financing and Delivery of HIV Care: Securing the Legacy of Ryan White.''

As previously stated, we support the IOM's recommendations to create a federal entitlement for low-income people living with HIV/AIDS. Historically inadequate funding has challenged CARE Act-funded states and municipalities in meeting the basic medical and support service needs of the tens of thousands of uninsured, underinsured, and low-income people with HIV/AIDS in the U.S. Fluctuating and insufficient appropriations have resulted in varying standards of care across the country. A new entitlement program would ensure that those who need care will have access to it.

Medicaid, an existing safety-net insurance program for low-income blind, elderly and disabled individuals, is available to those who are both very poor and already disabled by AIDS or another condition. The disability requirement means that people with HIV must become disabled before Medicaid will cover the very drugs that could have prevented disability in the first place. The proposed entitlement would address this current failure through its HIV-positive eligibility requirement. Until Congress enacts such a program, the Early Treatment for HIV Act (ETHA) is an alternate option that would expand access to treatment and care. ETHA would allow states to provide Medicaid coverage to people living with HIV/AIDS before they become disabled. Just as a new entitlement would have profound effects on the CARE Act, Medicaid programs directly impact existing CARE Act services. We urge the Committee to explore opportunities to incorporate the goals of ETHA into the reauthorization process as a way to strengthen the overall system of HIV/AIDS care.

The IOM's benchmark of success—uninterrupted access to antiretroviral therapy—is shared by many CARE Act funded agencies and providers and should be incorporated as a primary objective of the reauthorized CARE Act. Yet this goal cannot be achieved-through an entitlement program or the CARE Act-without consistent and sufficient federal funding. We urge the Committee to recommend to Congress establishing mechanisms to ensure the reauthorized CARE Act's programs and priorities are adequately funded.

Additionally, while IOM authors recommend a minimum benefits package that includes primary medical services, medications, case management, mental health and substance abuse treatment, low-income people with HIV/AIDS need access to larger set of enabling services including secondary HIV prevention counseling, housing, legal assistance, transportation, child care, and other essential services. We urge the Committee to recommend access to the full range of these important CARE Act-funded services.

Again, thank you for the opportunity to comment on these critical issues concerning the Ryan White CARE Act reauthorization.

Sincerely,

Mark Ishaug
Executive Director

Summary of the Institute of Medicine's report "Public Financing and Delivery of Care, Securing the Legacy of Ryan White"