For the past year, William Kibler has relied on Florida’s AIDS Drug Assistance Program to help provide the medicine he needs to stay healthy.
Kibler, who has been HIV-positive for 24 years, lost his health insurance last year when the company that he had worked for until retirement went bankrupt. He turned to ADAP — the federally funded, state supported program that provides HIV/AIDS medications for the uninsured and underinsured — to provide the nearly $1,800 worth of medications he needs to treat his HIV and related symptoms each month. These include antiretrovirals, blood pressure medicine, antidepressants, and medications that fight opportunistic infections.
But around the country, state ADAP programs are facing a budget crunch, as the recession strains state budgets and increases the number of people who need the assistance. States are taking cost-containment measures that include reducing the types of drugs they cover and un-enrolling clients. They’re also shutting their doors to new members — 6,000 people in the United States are currently on waiting lists for the ADAP program.
Just over 3,000 people on that waiting list live in Florida, where the crisis is particularly acute, and where Kibler and thousands of others like him are feeling the sting of cutbacks.
When Kibler went to pick up his medications last August, he was told that Florida’s ADAP had to make some changes — his blood pressure and antidepressant medicines would no longer be covered.
“It was a shock, and my first reaction was ‘where am I going to get the money to pay for these medications?'” he says. “It’s been scary because you don’t know from month to month what is going to be covered.”
Kibler says he began selling some of his possessions on eBay so he could afford medications. He stockpiled his drugs and reduced his dosages, uncertain that he would be covered for the next month.
“We’re all scared. We’re all scared to death. We feel like no one’s listening,” he says. “We’re scared we won’t have meds we need to keep us alive.”
Florida has been caught in the middle of a perfect storm. Unemployment in the state is currently around 12 percent, leaving people without incomes or insurance. The state also has the third highest number of AIDS cases in the United States, according to the Centers for Disease Control. There has been no increase in state or federal funding for ADAP in Florida for the last three years, while the number of infections has continued to rise, says Tom Liberti, chief of the Florida Department of Health’s Bureau of HIV/AIDS.
“We are such a large state, and we did not have a wait list for many years. The downturn in the economy hit us very hard for a long period of time,” he says. “We’re trying to use every dollar that we have so we can purchase as much as we can.”
Other states are making similar cutbacks. In Ohio, for example, officials have eliminated assistance for drugs not directly related to HIV, and instituted a waiting list for the program, the Columbus Dispatch reported. Louisiana has capped enrollment in their program. Washington has instituted client cost-sharing into the program, meaning the ADAP members now have a co-pay for their medications.
Brandon Macsata, CEO of the ADAP Advocacy Association, says that federal funding for the program hasn’t been able to keep up with the need in the United States for the last ten years. He says part of the reason ADAP hasn’t gotten sufficient funding is that HIV/AIDS advocacy has been the victim of its own success.
“HIV isn’t the sexy disease to fund anymore,” he says “As a nation we’re sending a message — know your status, get tested — then telling positive people to go get medication. Then we’re saying oh, there’s not money for you. Go get in line.”
Michael Ruppal, executive director of the AIDS Institute, says that ADAP provides vital services to those with the greatest need, and adds that keeping viral loads down helps reduce the risk of spreading HIV. Any interruption in treatment, such as forgoing medications or reducing dosages, can lead to serious long-term complications, he says.
Liberti says his first priority is to keep the 10,000 Floridians who are currently enrolled in ADAP covered. Until this week, it looked as though the state’s program, facing a $14 million budget shortfall, might run out of money this month, leaving patients in the lurch until the new fiscal year began April 1.
Last week, the advocacy group the Fair Pricing Coalition helped arrange a deal in which Welvista, a nonprofit that partners with pharmaceutical companies, would step in to provide 6,500 Floridians with their necessary drugs.
But this solution is only a stopgap measure until the new fiscal year begins in April. This kind of rescue is a one-time deal, says Lynda Dee, of the Fair Pricing Coalition. Having pharmaceutical companies step in is unsustainable.
“This is a time bomb, absolutely a time bomb in Florida,” she says.
Meanwhile, HIV-positive Floridians like Kibler are waiting anxiously to find out if they will continue to get their medications.
“April happens to be when I’m due to go in for a review,” Kibler explains. “I don’t know what’s going to happen. When you don’t know from day to day whether you’re going to have the medications you need to live, how do you live?”