PROVIDENCE, R.I. (AP) - Cash-strapped states are cutting back on a program that provides free medicine to people with HIV, leaving thousands of patients to wonder where their drugs will come from and stirring fears of a return to the days when an AIDS diagnosis meant certain death.
At least 19 states have taken such steps as capping enrollment, dropping patients, instituting waiting lists, lowering the income ceiling for eligibility, and no longer covering certain drugs or tests.
The AIDS Drug Assistance Program is funded by the federal and state governments and run by the states. It provides free drugs in all 50 states and U.S. territories. But because people are living longer with HIV and the recession has created more demand for the program, states have been unable to keep up.
“It’s very frustrating to be stuck in this position at this age and not feel well and be wondering if I am going to die any differently than the people who I helped die in the `80s,” said Stephen Farrar, 55, of Fort Lauderdale, Fla., who has HIV and is going on Florida’s waiting list. “Am I going to be one of those people?”
Health officials and advocates believe most people on ADAP’s waiting lists are getting AIDS drugs free from pharmaceutical companies. But advocates say an unknown number are falling through the cracks of those programs, which provide only a patchwork of coverage and have widely varying income requirements.
AIDS drugs can be extremely expensive _ a single one can cost more than $20,000 per year, and patients often need to take a cocktail of prescriptions to treat the disease or keep symptoms at bay.
In nine states, more than 4,500 people with HIV are on ADAP waiting lists or can’t get into the program because enrollment is capped, according to the National Alliance of State and Territorial AIDS Directors.
More than 300 people who had coverage were dropped this year, after five states lowered their income eligibility limits to as little as $21,000 per year. Hundreds more face the same fate by February if more states follow through on plans to cut their eligibility, the alliance said.
Several states have started covering fewer drugs _ only AIDS medications, for example, but not drugs for conditions often developed by those treated for HIV.
The cutbacks have set off alarm among some HIV patients, with some people cutting pills in half to make them last longer, said Stephen Hourahan, executive director of AIDS Project Rhode Island, a state that was hit hard by the economic downturn and which instituted a waiting list this fall.
“There were stories of people calling us in a panic because they were afraid they were going to die if they didn’t have their meds,” he said.
Waiting lists have been instituted previously for the program, said Ann Lefert of the National Alliance of State and Territorial AIDS Directors. But as demand has spiked, she said, the lists now are bigger than ever before.
The program had more than 168,000 people nationwide on its rolls in 2009, the most recent numbers available. The federal government spent $860 million on ADAP programs in the fiscal year that ends March 31, while states spent $336 million. In 2009, California, for example, spent $71 million, Texas $27 million and Illinois $14.5 million.
Nearly 1,400 people entered the program every month nationwide this year, compared with half that number in 2008, the alliance said. While many states have increased money sent to the program, it often hasn’t been enough to keep up with demand, and they’ve had to cut services. Despite the greater need, 12 states have put less money into their drug programs.
Most people on ADAP don’t qualify for Medicaid because they are not sick enough to be considered disabled. Some who do qualify can get only limited drug coverage; ADAP covers the gap.