Recession, state budget cuts imperil drug assistance programs
'The waiting lists have started up again'
States across the nation are starting waiting lists and cutting to the bone in their AIDS Drug Assistance Programs (ADAPs) due to an extraordinarily bad year for state budgets, ADAP directors say.
While many HIV advocates had hoped for additional federal funding to help out states, the anticipated funds never materialized, adding to the crisis.
"There was no funding in the stimulus package for HIV and AIDS," says Murray C. Penner, deputy executive director of domestic programs for the National Alliance of State and Territorial AIDS Directors (NASTAD) in Washington, DC.
"So there was no federal relief at all," Penner adds.
There might be increases for the Fiscal Year 2010, but there were no increases for FY 2009. And states have been forced to make major cuts to their ADAPs.
"From states' perspective, it's dismal at best," Penner says. "About 65 percent [of Ryan White Part B programs] have reported cuts from state funding for their programs."
Also, NASTAD's spring 2009 report says that half of state ADAPs have experienced funding decreases, and 55% of HIV prevention programs have experienced funding decreases in FY 2009. (See table on ADAP funding cuts.)
"Every year we have to go back to Congress begging for money for these programs," says Lynda Dee, JD, executive director of AIDS Action Baltimore in Maryland and a founding member of the AIDS Treatment Activist Coalition and a member of the Fair Pricing Coalition.
"The Fair Pricing Coalition has been a very fierce advocate from the early days of ADAP," Dee says.
The organization has helped ADAP directors negotiate lower drug prices and has pushed for the best treatment through the programs, Dee says.
"The waiting lists have started up again," says Bill Arnold, director of The ADAP Working Group in Washington, DC.
Indiana, Montana, Nebraska, and Wyoming had waiting lists as of May, 2009, and more states reported they likely would have waiting lists before the beginning of FY 2010, Arnold says.
"What's behind all this and what's absolutely clear is that state revenues are in free fall for a while yet," Arnold says. "Tax collections are off, and states without income taxes, which are dependent on real estate transfers, like Florida, are in the middle of a real estate collapse."
It's hard to predict how this will settle out in the next year, but it's safe to say that state revenues will continue to have problems, Arnold adds.
One good example of how these state budget problems will impact ADAPs is what happened in California in late July, 2009, when California cut $25.5 million in state funding to ADAP, says Michelle Roland, MD, chief of the California Office of AIDS in Sacramento.
"We'll be backfilling that [budget cut] with rebate funds for this fiscal year, and we're not anticipating significant program changes in this fiscal year," Roland says. "But we will not be able to sustain ongoing reduction beyond this fiscal year, so we're anticipating significant changes in FY 2010, which begins July 1, 2010."
California, with 181 drugs on its ADAP formulary list, has one of the more generous ADAPs.
The state of New York cut $56 million from its ADAP budget and then borrowed funding from the next fiscal year's appropriation, so any potential program cuts will be delayed, Arnold notes.
Other states, including Arizona and Montana, already have cut their ADAPs' services.
The state of Arizona, which serves about 1,200 ADAP clients each month, removed about 40 drugs from its ADAP formulary as of July 1, 2009, including psychiatric, cholesterol, and heart medications, says Alfonso Urquidi, Ryan White Part B HIV care and services program manager in the office of HIV/AIDS in Phoenix, AZ.
The 40 drugs removed from the formulary had been available to HIV/AIDS clients for the past five years, he says.
The state made no changes in eligibility and did not have a waiting list as of July, Urquidi says.
"The changes will prevent a waiting list," he adds.
Arizona was hit hard by the housing bubble crisis, Urquidi notes.
"Real estate was one of the biggest industries here, and the recession has impacted tax revenues and tourism," he explains.
"We hope we'll receive additional federal funds for ADAP, but if we don't, we'll consider other options like changing ADAP eligibility requirements," Urquidi adds.
The state of Montana had an ADAP waiting list of 24 people as of late July, 2009.
The state's ADAP problems relate to a slight increase in the number of people infected with HIV and seeking ADAP services, as well as increases in ADAP drug and treatment costs, says Judy Nielsen, Part B manager and ADAP manager for the state of Montana in Helena, MT.
The state historically has had about 20 new HIV cases per year, but had 19 new cases within the first half of 2009, Nielsen says.
"Our numbers are so small, the increase could be a blip or due to a greater emphasis on HIV testing, which would be something we'd consider a success," Nielsen says.
The state's ADAP formulary no longer lists any mental health drugs, which are very expensive, Nielsen says.
"All we have are antiretrovirals and opportunistic infection drugs and a few cholesterol drugs," she adds.
"What's specific to Montana is our incidences of HIV are lower, so we get less federal money," Nielsen says. "Montana contributes $276,000 to ADAP, and the federal government contributes $860,000."
The state has had a waiting list on and off since 2002, she adds.
Despite the waiting list, HIV patients have access to antiretrovirals through patient assistance programs, Nielsen says.
"They're not dying because they have no medication," she adds. "They have medication, but it's just not being paid through our program."
One of the more frustrating aspects of ADAP funding and services is how unevenly distributed it is throughout the states, Dee notes.
"It's like every state is a different country," she says. "So they'll cover anything from 200% to 500% of the federal poverty level."
Also, some states will cover all of the most important drugs, and others will not, Dee adds.
"Some states have much harder financial eligibility criteria, and some limit access to particular drugs or require cost-sharing or have monthly or annual limits," Dee says.
One reason for this disparity is that some states receive greater federal ADAP funding due to having urban areas with high rates of HIV infection.
Most states, however, will need to make tough choices about how to meet demand for ADAP services, Penner says.
"Things are not looking good at the state level, and we don't see that turning around in the short term," Penner says.
"Certainly, over the last few years states have struggled with no increases in federal funding, and the challenge has been a lot of state layoffs, furloughing staff, and reassigning staff to other areas," he adds.
"From the capacity standpoint, we're years behind in terms of where we were before the downturn started," Penner says. "The challenge will continue as this trickles down to community-based organizations who provide many services for states, who are suffering, as well."
ADAP problems likely will continue without federal help. But this financial rescue does not appear to be a top priority among the new Democratic administration and the Democratic Congress. President Barack Obama's focus has been on overarching health care reform and not on disease-specific funding, Arnold says.
"Over the long haul, health care reform might alleviate a lot of HIV-positive people's access to health care," he adds. "But until we see it pass and see what it looks like, and this will be a few years at least, we won't be able to honestly say whether health care reform has helped that much."
It's the short-term damage to current ADAP clients that worries Arnold most: "I'm really concerned about the HIV-positive people who will need access to treatment in the next six months or the next 18 months," he says.
"Are we going to have another 18,000 to 20,000 people looking to ADAP for help when the programs have the same amount of money?"
States across the nation are starting waiting lists and cutting to the bone in their AIDS Drug Assistance Programs (ADAPs) due to an extraordinarily bad year for state budgets, ADAP directors say.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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