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ADAPs worst-case scenario arrives with a vengeance
Waiting list for drugs now tops 6,700 people
For years HIV experts and advocates have warned that unless federal funding for the AIDS Drug Assistance Program (ADAP) was ramped up significantly then thousands of Americans could be left off the roles and face risks of illness and death without dependable access to antiretroviral therapy (ART).
It looks like 2011 is the time when their worst-case scenario is realized. More than 6,000 HIV patients have lost access to their medications through ADAP, putting pressure on HIV clinics, providers, and AIDS service organizations to help people find their life-saving drugs before the virus rebounds and they become ill. And at least one HIV/AIDS patient has died while waiting for access to ART.
Before the recession, ADAPs appeared to be doing fairly well with more generous formularies and easier access than in the early years. States had increased their own funding, expanded their formularies, lowered eligibility requirements, and there were no waiting lists. But this situation began to reverse in the past 18 months as the recession resulted in strapped state budgets, causing some drastic ADAP cutbacks, particularly in Southern states.
The problem has ballooned in the past year. As of the end of February 2011, there were ADAP waiting lists in 11 states, totaling 6,704. This includes Florida with 3,407 people on the list and Georgia with 1,009 people on the list, according to The ADAP Watch, a weekly report by the National Alliance of State and Territorial AIDS Directors (NASTAD). (See related story, below.)
Hard times: ADAP cuts widespread
The National Alliance of State and Territorial AIDS Directors (NASTAD) of Washington, DC, provides regular updates on changes in AIDS Drug Assistance Programs (ADAPs) nationwide. The ADAP Watch report, released on Feb. 25, 2011, noted these changes:
ADAPs with waiting lists:
Cost-containing strategies used by ADAPs from April 2009 to February 2011:
Editor' note: For the latest update on ADAPs nationwide, visit the NASTAD website at www.NASTAD.org.
South Carolina, a relatively small state, has 468 people on the list and another 200 clients about to be pushed off ADAP. At least one South Carolinian with HIV has died while waiting to receive antiretroviral drugs, says William E. Arnold, director of the CANN-Community Access National Network in Washington, DC.
The ADAP waiting list is record high, but even that doesn't tell the entire bleak story, Arnold says.
"We have somewhere over 1,000 people who have been dis-enrolled from ADAP," he says. "Some states have reduced the eligibility requirements for the ADAP program, so if someone is making too much money they are not eligible and are not on a waiting list."
These eligibility requirements were made retroactive so that an HIV patient, whose $30,000 annual income qualified him for ADAP drugs last year, now makes too much money, and he's told to find his medications elsewhere.
Federal help unlikely
With states being forced to make draconian budget cuts, the only practical way to change this bleak situation would be to increase federal funding, and that seems unlikely given the current budget crisis, Arnold notes.
"The prospects of getting additional money has gotten worse and worse over the last four to five years, particularly from the federal contribution," he says. "Go back to 2001, and the federal government picked up 70% of ADAP expenditures, and now they're around 49%."
While President Obama's FY2012 budget calls for some HIV/AIDS funding increases, the continuing resolution FY2011 budget proposed by the new Republican-led House of Representatives makes drastic cuts to health care infrastructure for the poor and flat-funds HIV programs, says Ronald Johnson, vice president of policy and advocacy for AIDS United of Washington, DC.
Plus the House budget would cut funding for the new Affordable Care Act. If the House budget bill was passed, there would be little hope that access to HIV medications would improve in 2014 as many of the health care reform bill's policies take place.
The House's continuing resolution would cut all funding to Planned Parenthood clinics, cut global funding for reproductive health, and cut funds to community health clinics all of which are places where the nation's and world's poor and dispossessed, including HIV patients, seek health services, Johnson says.
"That would undermine the public health infrastructure," he says. "With a prohibition on funding, about 500 of 800 Planned Parenthood affiliates would close, and that's critical for HIV because Planned Parenthood does HIV testing."
As the Republic-led House carries forward campaign promises to stop implementation of the Affordable Health Care for America Act of 2010, there is a bigger threat to ART access on the horizon, Arnold notes.
The health care reform bill will provide ART access through Medicaid for many low income, currently-uninsured clients when major provisions go into effect in 2014.
"What we're trying to do is preserve access to medications for the 160,000-plus people in ADAP until health care reform comes in and a huge percentage of our ADAP folks go to Medicaid," Arnold says.
But this is assuming the health care act survives in a way that is at all useful, he adds.
"When all of these things happen in the next 30 months, then we'll have some idea what the national picture is," Arnold says. "In theory, there is relief coming in the distance, but how much damage will we do between now and then if ADAP resources are not adequate in-between times?"
President Obama has proposed about $80 million for ADAP, but his budget is unlikely to be approved as it is, Arnold says.
"We need even more funding than the president currently proposes in his FY2012 budget," Johnson says.
"And we won't get the FY2012 money for 18 months from now," Arnold says. "The ADAP budget is six months behind the regular federal budget."
A 'devastating impact'
The federal funding crisis is compounded by state fiscal problems.
"There is no question of the severity of the nationwide crisis at the state level," Johnson says.
Governors and state legislatures are cutting Medicaid services as they struggle to balance state budgets, but this is harming vulnerable populations and will result in someone somewhere paying a great deal more as people increasingly go to emergency rooms for treatment of preventable illnesses, he explains.
"This is having a devastating impact on low income people and people living with HIV/AIDS," Johnson adds. "It also highlights the importance of a provision in the Affordable Health Care Act called maintenance of effort, which prohibits states from making changes in eligibility that would drastically reduce the Medicaid role."
HIV/AIDS advocates have been calling on governors to be flexible in their budgeting process and not make short-sighted cuts to programs that prevent bigger expenses down the road.
"We're in a period when the public health infrastructure and viability and safety of health care programs are threatened," Johnson says. "AIDS United is working with partners throughout the HIV community to maintain vigilance."