Waiting Lists and Limited Access to AIDS Drug Assistance Programs Persist Despite Increased Federal and State Funding
Wide Variation in Access to HIV Medications Across States
Washington, DC – Twenty-one State AIDS Drug Assistance Programs (ADAPs) report limiting access to their programs in some way, including 11 with waiting lists, despite an increase in the national ADAP budget, according to the ninth annual National ADAP Monitoring Project Report released by the Kaiser Family Foundation and the National Alliance of State AIDS Directors (NASTAD).
Overall, the ADAP budget rose by 11% in FY 2004 enabling 38 ADAPs to provide more people with medications. The increase over FY 2003 levels was due to substantial increases in state funding (32%) and drug rebates (33%), and a 5% increase in the federal appropriation (earmark). And an additional $20 million of federal funds was made available to provide medications directly to people living in 10 states that had waiting lists in place during June 2004.
Despite increased funding levels and special efforts to reduce waiting lists, the need for medications still exceeds the funds available in some states. Since ADAPs are a discretionary program funded federally through the Ryan White CARE Act, funding levels are not conditioned on the number of people who need prescription drugs or the cost of medications. States administer their own ADAP with broad latitude over program design, including determining eligibility criteria and the drugs offered on formularies, which has resulted in wide variations in access across the country.
“ADAPs serve as a critical safety net for people with HIV/AIDS in the U.S., filling the gaps in prescription drug coverage,” said Jennifer Kates, M.A., M.P.A., Vice President and Director of HIV Policy, Kaiser Family Foundation. “The growing number of people who need HIV medications and rising drug costs continue to exceed available resources.”
Waiting Lists and Other Cost Containment Measures. As of March 2005, 21 states reported having one or more cost containment measures in place, including waiting lists (11 ADAPs), capped enrollment (3 ADAPs), and formulary reductions or restrictions (4 ADAPs). The 11 ADAPs with waiting lists, totaling 627 individuals, were Alabama, Alaska, Arkansas, Idaho, Iowa, Kentucky, Montana, Nebraska, North Carolina, West Virginia, and Wyoming. In general, those states serving the greatest number of people living with HIV/AIDS do not currently have waiting lists in place and tend to have more generous access to their programs.
“This is an ongoing, severe crisis in which many states are desperately struggling to provide these life-saving medications to people in need,” said Julie Scofield, Executive Director, NASTAD. “With needs outpacing resources, ADAPs continue to face difficult choices to keep programs solvent and continue access to medications for current clients and new individuals joining the care system.”
What You Get Depends on Where You Live. Due to limited funding and state discretion over ADAP program design, there is significant variation in the scope and availability of services among ADAPs. For example:
- Eligibility for ADAPs ranges from 125% of the Federal Poverty Level (FPL) in North Carolina (approximately $9,310 for a family of one in 2004) to 500% FPL or more in 5 states (Delaware, Maryland, Massachusetts, New Jersey, and Ohio.)
- ADAP formularies range from 25 drugs offered in Louisiana to nearly 500 in New York and open formularies in three states (Massachusetts, New Hampshire, and New Jersey.)
- 17 ADAPs do not offer all FDA-approved antiretroviral medications, including one ADAP (South Dakota) that does not provide any protease inhibitors, one of the four classes of antiretroviral medications available to people with HIV/AIDS and a key component of highly active antiretroviral therapy (HAART).
- 15 ADAPs offer fewer than 10 of the 16 drugs highly recommended (“A1” drugs) by the U.S. Public Health Service/Infectious Diseases Society of America (USPHS/IDSA) for the prevention of opportunistic infections (OIs). One state (Louisiana) does not offer any medications for OIs or any other HIV-related conditions on its formulary, and only covers ARVs.
Some State ADAPs Experienced Budget Decreases. Despite an increase in the national ADAP budget, 15 ADAPs (Alabama, Alaska, Iowa, Kentucky, Maine, Maryland, Mississippi, Montana, New Hampshire, New Mexico, Ohio, Oklahoma, South Carolina, Washington, and Wisconsin) experienced net decreases in their budgets, 6 of which have waiting lists in place.
ADAP Clients. In order to qualify for ADAP, a person living with HIV/AIDS must have no other funding source available to them for medications, or limits in their drug coverage. Each year, approximately 136,000 people receive services from ADAPs, representing about 30% of people estimated to be living with HIV/AIDS in care in the U.S. The majority of ADAP clients are low-income, male, uninsured, and/or people of color, and many have indicators of advanced HIV disease.
While ADAPs are estimated to provide medications to a significant proportion of people with HIV/AIDS in care, there are many more who are not in the care system. The Centers for Disease Control and Prevention (CDC) estimates that of the almost 1 million people estimated to be living with HIV/AIDS in the U.S., 42%-59% are not yet in the health care system, including those who should be receiving HAART and other HIV-related medications. Each year, an estimated 40,000 new HIV infections occur in the U.S.
Today at 1:30 p.m. EDT, Julie M. Scofield, Executive Director of NASTAD; Jennifer Kates, Vice President and Director, HIV Policy, Kaiser Family Foundation; and Murray Penner, Director, Care and Treatment Programs, NASTAD, will present the survey's key findings at a conference call release. They will be joined by Jane Cheeks, Director, Division of HIV/AIDS Prevention, Alabama Department of Public Health; Michael Butler, Director, Division HIV/STD, Indiana State Department of Health; and Michael Montgomery, Chief, Office of AIDS, California Department of Health Services. To participate in the conference call release, call 1-800-256-8682. The password is ADAP.
The 2005 National ADAP Monitoring Project Report and materials from the conference call release are available online at http://www.kff.org/hivaids/hiv042005pkg.cfm
Methodology Since 1996, the National ADAP Monitoring Project, an initiative of the Kaiser Family Foundation (KFF) and the National Alliance of State and Territorial AIDS Directors (NASTAD) has been surveying state and territorial ADAPs. All jurisdictions receiving ADAP earmark funding through the Ryan White CARE Act are surveyed (the number receiving such funding has increased over the course of the project). In FY 2004, 57 jurisdictions received earmark funding and all 57 were sent the ADAP survey. The survey is sent to states on an annual basis. It requests data and other program information for a one month period (June), the fiscal year, and for other periods as specified. After the survey is distributed, extensive follow-up is conducted by NASTAD to ensure completion by as many ADAPs as possible. Fifty-two of 57 ADAPs responded to the current survey. Data used in this report are from June 2004 and FY 2004, unless otherwise noted (for example, some data are supplemented through other NASTAD data collection efforts, such as its bi-monthly “ADAP Watch” survey). |
The Kaiser Family Foundation is a non-profit, private operating foundation dedicated to providing information and analysis on health care issues to policymakers, the media, the health care community, and the general public. The foundation is not associated with Kaiser Permanente or Kaiser Industries.
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