ADAP problems continue as waiting lists top 300
Many people who need drugs are off the radar
Budgetary problems in funding antiretroviral drugs, which have been growing over the past five years, have led to a situation in which perhaps tens of thousands of HIV/AIDS patients know their status but are not in treatment because they have given up on the system, experts say.
More than 200,000 people who know their HIV status are not in treatment, says Bill Arnold, director of the ADAP (AIDS Drug Assistance Program) Working Group and of the Title II Community AIDS National Network in Washington, DC.
One CDC study estimates that only 55 percent of people living with HIV/AIDS who are eligible for antiretroviral treatment are receiving treatment.1
"We take this seriously, and what it says is we have got pockets of HIV positive people who know they are positive and, for some reason or another, they are not on treatment," Arnold says.
"We are positive that the street scuttlebutt is that ADAP doesn't have any drugs," Arnold adds. "We can't prove it, and it would cost a fortune to get the data pinned down, but I've been doing this for 21 years, and part of the problem has to be that the word is out that ADAP doesn't have any money."
Part of the equation includes people giving up on treatment, but a bigger driver is the fact that many people are infected and don't know their status, or they have dropped out of medical care after receiving their diagnosis because they are generally not within the health care system, says Murray Penner, deputy executive director for the National Alliance of State and Territorial AIDS Directors (NASTAD) of Washington, DC.
State ADAPs now have a waiting list including 302 names, with South Carolina accounting for 209 on a waiting list, Arnold says.
"It seems unconscionable that we have waiting lists for treatment when we have money available in this country to provide medical care to everyone who is HIV infected," Penner says.
North Carolina, which has been one of the states with long-standing waiting lists, contributed enough state money this year to put everyone in need on treatment. Also, North Carolina legislators changed state law so that the ADAP improved its low eligibility from 125 percent of the federal poverty level to 200 percent of the poverty level, Arnold says.
Other states with waiting lists include Alabama, Alaska, Indiana, Montana, and West Virginia, he says.
"Three other states have thrown in cost containment stuff, such as Mississippi, and reduced the medical eligibility for ADAP, which means less people are eligible," Arnold says. "Sometimes states take drugs off the formulary and sometimes they limit prescriptions but, for years, it's varied."
A number of other states have announced they will have financial difficulty with funding ADAP later this fiscal year, and these include Kentucky, Louisiana, Mississippi, Michigan, and Rhode Island, Arnold says.
"All of these states have said, 'We have to do something because we're going to run out of money,'" he adds.
Southeastern states have a growing burden in the HIV epidemic, and this fact coupled with flat funding in the Ryan White CARE Act, has contributed to the waiting lists and other problems, Penner says.
"The other piece is the state's contribution to ADAP and the state's contribution to medical care, in general, for indigent populations, particularly Medicaid programs," Penner says. "Look at all those factors and look at the poor system of funding, in general, and we don't see any [funding] increases coming their way."
South Carolina's waiting list this year might have several causes, including increased numbers of identified HIV cases and, perhaps, an acknowledgement of a long-standing, but hidden problem with funding treatment and care, Arnold suggests.
"And there's no question that South Carolina has the typical emerging HIV problem among rural African Americans," he says. "I suspect some outreach [HIV testing] programs and black church [testing] programs have turned up more folks than would have been expected in the past."
No congressional or presidential proposals have suggested adding more funding to ADAP for the next fiscal year, and the current fiscal year was effectively flat-funded, Penner notes.
"We keep pushing for higher priorities of not only funding ADAP, but policies, in general, that help the Ryan White CARE Act and access to care," Penner says. "We're optimistic that one of these days we'll see some priorities changed that will help improve access to care."
So far, the only bright spot in proposed funding is the House Appropriations Committee's proposed $70 million increase for Title II of the CARE Act for fiscal year 2007, but there is no proposed increase for ADAPs specifically, Penner notes.
NASTAD estimates that $197 million more is needed than what was funded in fiscal year 2006.
"For the last few years, the Congress and president have not paid any attention to ADAP's needs," Arnold says. "That's one reason why ADAP is in the poor shape it's in now."
What worries Arnold and Penner is the potential increase in ADAP needs, should the CDC succeed in its goal of getting everyone who is HIV infected tested.
"One of our concerns is the increased push for testing," Penner says. "If the results that are expected are achieved, then, certainly, there will be a lot more people coming into HIV treatment, which will place more burden on the Ryan White CARE system, in general."
Universal testing already is prevalent in some areas, including the Washington, DC, area, where emergency rooms and prisons routinely test people for the virus, Arnold notes.
"The ethics and morality of doing the testing when all you can do is pretend that when they test positive that they'll get access to care is another matter," Arnold says.
While increased testing is a popular idea, it's naïve to think that the current underfunded ADAP and Ryan White CARE Act system could handle an additional 100,000 HIV patients, Arnold says.
Reference
- Eyasu Teshale, et al. Estimated number of HIV-infected persons eligible for and receiving HIV antiretroviral treatment, 2003 — United States. Presented at the 2005 Conference on Retroviruses and Opportunistic Infections, held Feb. 22-25, 2005, in Boston. Abstract: 167.
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