As a budget crisis for AIDS Drug Assistance Programs grows desperate, patient advocacy organizations will meet in an emergency summit this month in Fort Lauderdale.
The AIDS Drug Assistance Programs provide low-income Americans who are HIV positive the medications they need. Funding for ADAP in all 50 states comes through the federal Ryan White Program, but according to the National Alliance of States and Territorial AIDS Directors, as of Jan. 6, in Florida, there are over 2,715 HIV patients who are on an ADAP waiting list, the largest of its kind in the U.S. (See the full fact sheet below.)
Brandon Macsata, CEO of the nonprofit ADAP Advocacy Association AAA+ tells The Florida Independent that he has no way of knowing how many people on the waiting list are getting their medications. Some people can pay out of pocket, but the costs are high. Mascara adds that no one can accurately say that people on the waiting lists are not falling through the cracks.
“The pharmaceutical companies have made their drug assistance programs available,” says Macsata, “but we don’t know how many people on the waiting lists are being covered this way.”
In response to this crisis, AAA+, along with the AIDS Healthcare Foundation, will host a summit called “ADAPs in Crisis: Preparing for 2011″ on the last weekend of January.
The AAA+ website explains:
The [summit] agenda will be comprised of updates about the crisis, legislative updates (such as what to expect with the 112th Congress), available solutions and grassroots and advocacy trainings. The purpose is to identify key action steps that can be taken in 2011 to secure additional federal appropriations, programmatic reforms, available private resources and other remedies to move beyond ADAP wait lists and improve access to care for all people living with HIV/AIDS.
Mascara tells the Independent that the budget problems facing ADAP stem in part from the enduring financial crisis: Many of the unemployed seek help from their state ADAP. At the same time, states have cut funding for ADAP to balance their budgets, and the federal government lowered its funding increases for the programs.
According to The New York Times:
Drug assistance has grown since 1996 to become the largest component of the federal Ryan White program, which provides grants to states and localities. The drug program’s budget from all sources is now $1.6 billion, with Washington contributing about 55 percent, states offering 14 percent and drug company rebates accounting for 31 percent, according to the state AIDS directors.
A confluence of factors has caused the strain. Enrollment has spiked during the recession, up 12 percent from June 2008 to June 2009, to about 169,000 people. The trend has probably accelerated since then. n Florida, monthly enrollments grew by a third between May 2009 and May 2010.
A renewed emphasis on testing is also driving up caseloads, and federal treatment guidelines now recommend an earlier start to drug therapy. Because the drugs are so effective, people often stay on the rolls for extended periods.
Meanwhile, federal financial support has stayed essentially flat, up barely 2 percent this year, while appropriations from state budgets have fallen 34 percent, according to the state AIDS directors. The drug companies increased their contribution by half, to nearly $500 million, but it is still not enough.
According to Macsata, not all 50 state assistance programs are in trouble. The most recent data shows that 10 states have waiting lists, while at least another 10 states (Florida included) have implemented cost-containment strategies that include capped enrollment, co-payments, and less medication.
The National Alliance of States and Territorial AIDS Directors fact sheet:
