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States are doing better, but not out of woods yet
The AIDS Drug Assistance Program’s (ADAP) simple mission, when founded in 1987 to help states purchase AZT, has become a $700 million-plus force in providing a variety of antiretroviral drugs and treatments to HIV patients in all states and territories.
Serving 61,000 people in 1999, ADAP contributed to improving the AIDS survival rate of the past few years, says Bill Arnold, chair of the ADAP Working Group in Washington, DC. The advocacy coalition consists of pharmaceutical companies and AIDS organizations.
"It’s quite clear that one of the reasons we’re not losing 40,000 people a year to AIDS and instead are dropping down to 16,000 deaths is because we are providing the medications through ADAP," Arnold says.
A new report on ADAP highlights how the program has expanded considerably in the past few years, as antiretroviral regimens became the treatment standard.
Along with the growth, a number of states experienced problems, as many had long waiting lists for people who needed the drugs and others limited drug coverage or eligibility, according to the "National ADAP Monitoring Project: Annual Report March 2000," which is a joint effort of the National Alliance of State and Territorial AIDS Directors (NASTAD) of Washington, DC, the AIDS Treatment Data Network of New York City, and The Henry J. Kaiser Family Foundation of Menlo Park, CA.
"Since combination therapy was introduced in late 1995 as the standard of care, ADAPs have experienced a tremendous growth in monthly expenditures and a large influx of new clients," the report says.
The report notes a trend of annual increases in the monthly ADAP expenditures and the number of new clients, says Arnold Doyle, MSW, director of the HIV Treatment Program for NASTAD and a co-author of the report.
"We’re still seeing increases, but not as great as when they peaked in 1996 when combination therapy came on the scene," Doyle says. "Also what is happening is new medications, new diagnostics, and new monitoring tests are available, and the program will start to deal with how to pay for viral resistance testing, for example."
The report’s key findings are as follows:
• People with HIV receive differing levels of care, depending on where they live. In North Carolina, for example, they must have an income below 125% of the federal poverty level to be eligible for ADAP medications, while in New York state they are eligible at 500% of the poverty level. (See state-by-state ADAP profile chart, pp. 64-65.)
• The amount and types of drugs covered by ADAP also vary from state to state. Some states, such as Alaska, Nebraska, and Colorado, cover fewer than 20 drugs. But in California, New York, Oregon, and Puerto Rico, more than 100 drugs are available through ADAP.
ADAP clients doubled in 3 years
• The number of people served by ADAPs doubled between 1996 and 1999 to about 60,000, and the monthly costs tripled to $43 million in June 1999. These increases largely have affected the states hit hardest by the AIDS epidemic, including New York, California, Florida, and Texas.
• Antiretroviral drugs, which account for about 90% of all expenditures, represent the largest cost increases.
• Southeastern and frontier states are both increasingly affected by AIDS and continue to have the worst ADAP funding problems, resulting in capped enrollment, restricted access to protease inhibitors, and budget shortfalls.
• Those receiving ADAP assistance primarily are very poor, with an average income below 200% of the poverty level. Nearly half of ADAP beneficiaries have an income below 100% of the poverty level.
• People receiving ADAP help rarely have other insurance coverage. Only 7% received Medicaid, and another 7% had private insurance that included some prescription drug coverage.
• About 31% of ADAP clients are African-American, 40% are white, 25% are Hispanic, and Asians and Native Americans account for 1%. The race of 3% is unknown.
• Five states continue to use medical eligibility requirements, in addition to documented HIV infection, to determine ADAP coverage (down from 12 states in 1997). These eligibility requirements typically are based on CD4 cell counts and/or viral-load measurements. The five states are South Carolina, Idaho, Maine, Arkansas, and Georgia (Puerto Rico also has such a requirement).
• A total of 23 states cover 10 or more of the 16 drugs recommended by the Guidelines for the Prevention of Opportunistic Infections for Persons Infected with HIV.
The report also details outreach programs 10 states have implemented in efforts to expand their ADAP coverage of minority HIV patients. Here’s a brief synopsis of what the states are doing:
• Alabama: The state’s Department of Public Health is conducting a needs assessment that will be used to develop a comprehensive statewide HIV/AIDS plan that focuses on providing better access to care and prevention activities to minority populations.
• California: The state has tripled the number of ADAP-participating pharmacies to more than 2,600, and much of the expansion serves geographic areas of minority concentration.
• Florida: The state Department of Health will conduct a statewide ADAP needs assessment that will be used in targeting outreach efforts.
• Indiana: The state Department of Health has joined forces with the statewide Comprehensive HIV Services Planning and Advisory Council to increase the participation of minorities in HIV care planning. The council also will conduct a needs assessment to look at potential disparities in access to HIV care.
• Louisiana: To assess potential disparities in access, the state has reviewed the demographics of people served by Ryan White Title II funding. Regions that had a disparity of 10% or greater will be explored in depth, including a look at prescribing patterns of individual physicians and chart reviews to determine why clients may not be on combination therapies.
• Maryland: The Maryland ADAP Transitional Assistance Program works with HIV/AIDS case managers and discharge planners in the state’s prison system to verify whether inmates being discharged meet ADAP eligibility requirements.
• Mississippi: The state redirected a portion of Ryan White funds to correct problems minorities experience in obtaining access to care and to expand treatment services at the University of Mississippi Medical Center, where many ADAP clients receive care.
• New York: The state routinely compares ADAP demographics with those of reported AIDS cases to identify any disparities. The state health department also commissioned a study to identify barriers to ADAP access. ADAP outreach programs focus on developing a referral network of agencies that serve minorities, gays/lesbians, criminal justice offenders, prostitutes, immigrants, substance abusers, the homeless, the mentally ill, and the hearing-impaired. A bilingual outreach staff targets Hispanic populations, and the state has culturally appropriate models for poster campaigns, as well as ads in Hispanic and African-American-oriented newspapers and radios.
• Virginia: Virginia is part of a multi-state and federal pilot program that provides clinical consultations to prison medical officials and offers pre-release ADAP assistance to provide a continuity of care.
• Washington: The state Department of Health is assessing treatment disparity issues, providers’ knowledge of ADAP and other HIV services, minority HIV patients’ knowledge of ADAP and HIV services, and client satisfaction with ADAP services. Also, the health department contracts with the state department of corrections and the state’s alcohol and substance abuse agency to encourage appropriate medical care for HIV-positive people.