State AIDS Drug Assistance Programs (ADAPs) Continue to Face Difficult Funding Challenges
11 States Close Enrollment—9 Have Waiting Lists to Receive HIV Drugs
Wide Variation in Access to HIV Medications Across States
WASHINGTON, DC – Despite a nine percent increase in the overall ADAP budget between FY 2002 and 2003, an increasing number of people living longer with HIV/AIDS, the rising costs of HIV medications, and continuing fiscal pressures at the Federal and state levels have led some state AIDS Drug Assistance Programs (ADAPs) to implement cost-saving measures such as capping enrollment and reducing the number of HIV-medications offered. The eighth annual National ADAP Monitoring Project Report reveals wide variation in the eligibility criteria and drugs offered by ADAPs in the 50 states, the District of Columbia, territories, and associated jurisdictions. The report was prepared by the Kaiser Family Foundation, the National Alliance of State and Territorial AIDS Directors (NASTAD) and the AIDS Treatment Data Network (ATDN).
ADAPs serve as “payer of last resort” for prescription medications to people with HIV/AIDS – meaning that to qualify for the program, individuals must have no other funding source available to them. In the month of June 2003 alone, more than 85,000 people were served by these programs, most of whom were low-income and minority Americans, and 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.
ADAPs are a discretionary grant program funded through the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which is administered by the U.S. Department of Health and Human Services. Because ADAPs are not entitlement programs, funding levels are not conditioned on the number of people who need prescription drugs or the cost of medications. In addition to federal funding, ADAPs may also receive state general revenue support and other funding, but these other sources are highly variable and dependent on local decisions and resource availability. Each state administers its own ADAP with broad latitude over program design, including determining who is eligible and what drugs are offered.
“ADAPs continue to be in a difficult situation with the need for HIV/AIDS medications exceeding available resources,” said Jennifer Kates, M.A., M.P.A, Director of HIV Policy, Kaiser Family Foundation. “While ADAPs play a critical role in the care system for people with HIV, they are often forced to make difficult decisions that may limit access to care for some in need and what people get often depends on what state they live in.”
“Many states are struggling to continue to provide these life-saving medications to people in need,” said Julie Scofield, Executive Director, NASTAD. “The difficult decisions state ADAPs are being forced to make to keep programs solvent are contrary to good public health.”
Key findings from the survey reveal:
Waiting Lists and Other Cost Containment Measures Affect Client Access. As of April 2004, 13 ADAPs—Alabama, Alaska, Arkansas, Colorado, Idaho, Indiana, Kentucky, Montana, North Carolina, Oklahoma, South Dakota, Washington, and West Virginia—had cost containment measures in place, including:
Eleven states have closed enrollment to new clients; nine of these states reported 1,263 people on waiting lists for medications.
Two states reduced the number of drugs offered.
Three states have monthly or annual per capita expenditure limits.
One state increased client cost-sharing.
Ten ADAPs anticipate the need to implement additional cost containment measures before the end of the current fiscal year (which ends March 31, 2005).
While waiting lists provide one measure of unmet need for ADAP services, they do not reflect the full level of need; some people who need ADAP services may not be on waiting lists and others who receive medications from ADAPs may not get the full level of treatment needed, especially in a state with a limited drug formulary.
What You Get Depends on Where You Live. Due to limited funding and state discretion over ADAP program design, there are significant differences in scope and availability of coverage across the country. Some examples of variation include:
Eligibility criteria for ADAPs ranges from 125% of the Federal Poverty Level (FPL) in North Carolina (this is approximately $11,000 in annual income for a single person) to 500% FPL or higher in Delaware, Massachusetts, New Jersey, and New York.
The number of drugs on ADAP formularies range from 18 in Colorado to 474 in New York, and open formularies in Massachusetts, New Hampshire, New Jersey, and the Northern Mariana Islands.
Sixteen states do not cover all FDA-approved antiretroviral medications, including one state (South Dakota) that does not provide any protease inhibitors.
Only seventeen states provide the full set of 14 drugs highly recommended by the Public Health Service/Infectious Disease Society of American (PHS/IDSA) Guidelines for the prevention and treatment of opportunistic infections. Two states (Colorado and Louisiana) do not provide any of these drugs or drugs for other HIV-related conditions.
Thirty-three states provide Fuzeon, the first drug approved by the FDA in a new class of HIV medications (fusion inhibitors).
Some State ADAPs Experienced Budget Decreases. While the overall ADAP budget increased by 9% between FY 2002 and FY 2003, largely driven by increases in the federal ADAP earmark (the federal ADAP earmark, the main component of the ADAP budget, increased by 12% over this period), five state ADAPs (Colorado, Delaware, Indiana, Minnesota, and Oklahoma) experienced net decreases in their budgets. ADAPS receive funding from several sources – the federal ADAP earmark went up for each state, but other sources did not and in some cases were cut, which means that a state’s overall ADAP budget may be less than in the prior year. Although budget increases have generally helped states to serve more people and spend more on drugs over time, the demand for medications still exceeds the resources available in many states.
ADAP Client Profile. The majority of ADAP clients are low-income, people of color, male, and uninsured.
Eight in ten (81%) report incomes at or below 200% of FPL, including about half (49%) falling at or below 100% of FPL.
The majority are people of color, with African Americans representing one-third (33%), Hispanics one-quarter (25%), and Asian/Pacific Islanders, Alaskan Native and American Indians combined representing approximately 2%.
More than three-quarters (79%) of ADAP clients are men and six in 10 were between the ages of 25 and 44.
Most ADAP clients are uninsured, with only small percentages reporting some other source of coverage (13% private, 8% Medicare, and/or 7% Medicaid).
The Centers for Disease Control and Prevention (CDC) estimates that there are approximately 850,000-950,000 people living with HIV/AIDS in the U.S., and more the 380,000 are estimated to be living with AIDS, the most advanced form of HIV disease. Each year, an estimated 40,000 new HIV infections occur in the U.S.
Methodology
The survey is sent to states on an annual basis. It requests data and other program information for the month of June of that year, for the fiscal year, and for other periods as specified. After the survey is sent out, extensive follow-up is conducted by NASTAD to ensure completion by as many ADAPs as possible. Fifty-four of 57 ADAPs responded to the current survey. Data used in this report are from June 2003 and FY 2003, unless otherwise noted (for example, some data are supplemented through other NASTAD data collection efforts, such as its bi-monthly ADAP Funding Watch survey).
All states receiving ADAP earmark funding through the Ryan White CARE Act are surveyed (the number of states receiving such funding has increased over the course of the project).
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.
