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The national AIDS Drug Assistance Program (ADAP) continues to experience shortfalls in the amount of federal and state funding necessary to provide antiretroviral medications to everyone who needs treatment, and ADAP officials say there is no remedy in sight. Meanwhile, Congress and President Bush’s administration are trying to find a way to provide drug coverage through Medicare, which theoretically could help relieve some of ADAP’s financial strain. On the other end of the spectrum, many states are experiencing budget crises of their own, so it’s less likely that they will be able to fill in the budget gap.
ADAP serves about 70,000 people, a 12% increase over 1999, and ADAP’s expenditures for HIV medications increased by nearly double that amount in one year’s time, according to a new report. State ADAP programs had a 22% increase in expenditures, filling 209,501 prescriptions, in June 2000 when compared with June 1999 among the 47 jurisdictions that provided complete data for those periods, according to the National ADAP Monitoring Project Report, released in March 2001. (See "Location strongest factor in getting ADAP help," in this issue.)
Although states are in much better shape for providing HIV medications to those in need than they were a couple of years ago, the recent increases in new ADAP clients and drug expenditures have created the potential for a crisis this summer, says Bill Arnold, chair of the ADAP Working Group in Washington, DC. "We’ve already written to President Bush, saying, We’ve got a crisis and need emergency supplemental appropriation in this year of $50 million,’" Arnold says. "What’s mainly driving the crisis at the national level is that more people continue to come out of the woodwork who need ADAP help," he adds.
About 600 additional people join ADAP rolls nationwide each month. Attrition is not as significant a factor as it once was, thanks to the drugs keeping people alive longer. "We asked for an additional $60 million last year, which we did not get," Arnold says. "So we ran figures and said, People will cut back in small ways you won’t notice much, but we’ll still have a $50 million crunch.’"
Some state ADAPs will begin to experience problems as early as June, Arnold predicts. "ADAP programs will not be able to add any new drugs, and in some places they’ll have to cap their enrollment, which means you’ll have to wait for somebody to die before you get a slot, and there will be official or unofficial waiting lists," Arnold says.
Large states with high numbers of HIV-infected people will feel the effects of the shortage first, Arnold predicts. These include California, Florida, and Texas. Some smaller states that historically have had waiting lists for ADAP enrollment also might feel the crunch, including South Carolina, Alabama, and West Virginia.
Alabama has 340 people on a waiting list and a total of 890 people enrolled in the program, says Jane Cheeks, MPH, JD, state AIDS director of the Division of HIV/AIDS Prevention and Control in the Alabama Department of Health in Montgomery. Those on the waiting list are receiving medications from emergency sources, such as HIV/AIDS clinics or pharmaceutical assistance programs, Cheeks says. "We don’t know of anybody at this point who wants medication but can’t get it through our clinics."
Each month, the Alabama ADAP receives 20 to 30 applications for assistance, but the program can only add a new person when someone else has been taken off the list permanently, either through dying or moving out of state, Cheeks says. "We’ve had some people who went back to work, but they are not making enough to pay for medications, or they are making too much to be eligible for Medicaid," Cheeks adds. "We’re not seeing much of people getting private insurance."
South Carolina has a small waiting list of 59 people. These people also receive medications through other sources, says Joann Lafontaine, MPH, program manager of Ryan White Title II at the South Carolina Department of Health and Environmental Control in Columbia. "We have had a waiting list for a very long time," Lafontaine says.
Florida has no waiting list at present. The state will receive a $5.8 million increase in federal Title II funding for the fiscal year which began April 1, 2001, but even that increase won’t cover all of the growth the state’s ADAP has experienced in the past year, says Joseph May, ADAP manager at the Florida Department of Health in the Bureau of HIV/AIDS in Tallahassee.
Florida’s ADAP budget is about $70 million, so the $5.8 million increase is less than 10%. On the other hand, the state ADAP added 1,680 new clients to its ADAP list in 2000, about 13% of its total caseload of 13,000. Some people have come off the ADAP caseload, but the net growth is still high, May says. "Our concern is that our net growth will more than eat up our funding increase," May says.
Colorado, which is a state that has had some significant problems with ADAP funding in the past, now has no waiting list and is adequately funded. However, that situation will likely change this year as the state makes its financial eligibility requirement less stringent, says Karen Ringen, program administrator for the Ryan White Title II Program in Denver. Colorado’s previous financial eligibility requirement to qualify for ADAP — income at 185% of the federal poverty level (FPL) — was among the nation’s strictest, according to the ADAP Monitoring Project Report.
The only states with less generous financial restrictions are North Carolina (125% of FPL) and North Dakota (150% of FPL), the report notes. (For a chart showing a state-by-state ADAP profile, click here.)
New York state, while having one of the most generous ADAP formularies and one of the largest HIV populations, has gotten through the past year without having to add restrictions or tolerate a waiting list, says Lanny Cross, ADAP director at the New York State Department of Health in Albany. "Definitely a number of states are right on the edge financially," Cross says. "I know that states like California and Illinois are counting every dollar every day to see if they can get through the current year."
New York’s ADAP has been helped by the fact that the state’s Medicaid program is comprehensive and provides medical and pharmaceutical coverage to HIV-infected people regardless of whether they have AIDS symptoms. "In other states, you have to be disabled, which puts more of a burden on those who are asymptomatic with HIV," Cross says.
If the national ADAP program does not receive the $50 million emergency increase, then New York’s program may have to transfer money from other AIDS programs to make up for the shortfall, but there likely will not be any ADAP cutbacks, Cross says. Besides hoping for more funding, ADAP directors would like to see Congress pass a Medicare pharmacy benefit, which would take some people off ADAP lists.
"About 8% of ADAP clients were reported to be on Medicare, as well," says Arnold Doyle, MSW, director of the HIV Treatment Program of The National Alliance of State and Territorial AIDS Directors in Washington, DC. (See "Medicare drug bill could lend boost to ADAPs," in this issue.) "So, potentially, if those folks had access to drugs from other places, they would be able to use that benefit before ADAP," Doyle says. "The same thing would happen with Medicaid expansions."
Unfortunately, in the case of Medicaid, most states do not consider people who are HIV-positive to be eligible for coverage unless they are poor and disabled, such as having AIDS-defining illnesses, Doyle adds. Some states have applied for Medicaid waivers that would allow them to provide coverage to HIV-positive individuals, Doyle notes. "In the cases where the waivers have been approved, including Maine, Massachusetts, and DC, it’s been shown to be budget-neutral," he adds.
In the meantime, ADAP enrollment continues to grow at a much faster rate than its funding. South Carolina’s ADAP program continues to add more clients, but there is little chance of receiving additional state funding, Lafontaine says. "Our state is in the same situation as many states, where we’re seeing huge shortfalls in the state budget, so we won’t get their attention this year or in the near future," Lafontaine says.
Colorado’s program is another case in point: While the program now offers eligibility to a greater number of clients and has added treatment for opportunistic infections to its formulary, its new funding that went into effect April 1, 2001, was increased by only $127,000, just enough money to cover 15 additional clients, Ringen says. "We don’t want to be in a situation where we offer medications to more clients and then in a couple of years have to stop their medications," Ringen adds.