Amy Bell-May, a 29-year-old from Greenville who was diagnosed with AIDS in 2004, learned in March she'd been placed on the waiting list for enrollment in a government-funded drug assistance program.
She got the news in a letter from the state.
"It seemed like someone handing me a death sentence all over again," Bell-May said.
After six months on the list, Bell-May discovered last week she'd been accepted into the state's AIDS drugs assistance program. Although her medication had been provided for free by a drug company while she waited, Bell-May said the "take-a-number" attitude of the waiting list was chilling.
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"I feel for the people still on the wait list and the people who don't know how to advocate for themselves," she said.
On the heels of unprecedented state budget cuts that have shuttered AIDS prevention programs and forced hundreds of sick people to join Bell-May on the medication waiting list, agencies that treat AIDS patients across the state are girding for what they're calling the tightest economic straits they have ever seen.
Although the state is ranked 10th in the country for the rate of new reported cases, South Carolina cut about $3 million in funding for AIDS prevention and drug assistance programs last year, forcing agencies to rely on federal dollars.
But the federal money does not flow to the Palmetto State no-strings-attached: State contributions are expected as a show of commitment to the cause, said Ashley Redmond, program manager of the Ryan White Program, a federally-funded AIDS clinic at Bon Secours St. Francis Hospital. The shortfall of state funding jeopardizes future federal dollars.
The predicament leaves South Carolina's AIDS advocates desperate for a solution.
"Am I worried about it? That's an understatement," said Bambi Gaddist, executive director of the S.C. HIV/AIDS Council, a nonprofit group in Columbia. "This is people's lives we're talking about here. We're talking about people dying because they don't get care."
Hundreds of people in need of medication have been on a waiting list this year for the AIDS Drug Assistance Program, which helps cover the cost of medication for about 2,000 South Carolinians a month, said Anand Nagarajan, the state director of the program. Enrollment in the program has had double-digit increases for each of the past several yearsand only modest increases in funding, Nagarajan said.
The program hit what officials called a "crisis point" in mid-March, when nearly 300 people went on the waiting list to enroll in the program. Later, the federal government gave the state $1.5 million in emergency funding, an amount that eased about 200 people from the list, Nagarajan said. As of Thursday, 103 people were waiting for enrollment.
Case workers throughout the state said they have applied to pharmaceutical companies' drug assistance programs to get treatment to the most impoverished patients. But those programs are meant to serve as a stop-gap measure until slots in the state program open up, officials said. Processing for those programs can take weeks and the paperwork is complicated.
"Fewer case managers spend all day filling out paperwork instead of directly taking care of people," said Gaddist.
Some patients are ineligible even for the stop-gap measures. Angel Harmon, a social worker at MUSC's pediatric AIDS clinic, which serves patients until they are 21, said one of her charges was diagnosed in January and placed on the waiting list in March.
"Now, we're in mid-September and there's still no meds," she said.
The delays can create a variety of problems that pose additional health risks while driving up health care costs, experts said. Drug resistant strains of HIV emerge. Untreated patients, who harbor higher levels of infection, pose a greater risk of infecting other people through sexual contact or drug abuse. AIDS patients easily contract other serious infections, such as tuberculosis and pneumonia.
West Ashley resident Lisa Merchant, 41, who was diagnosed with AIDS in 2008, is convinced she'd be dead without her medication. She enrolled in the state's drug assistance program before the waiting list took effect.
"The medication is too expensive for me," Merchant said of her daily pills, which cost $1,000 for a month's supply. "If it wasn't for the help, God forbid, I wouldn't be alive today."
Even legislators sympathetic to the cause said future state funding for what advocates call the "life-saving" program remains uncertain.
Now, federal funding, the crutch South Carolina's AIDS advocates have leaned on this year, might be in limbo because of insufficient state matching funds, a U.S. Department of Health and Human Services spokesman said.
The state requested and was granted a waiver of the match requirements for the drug assistance program last year, Health and Human Services spokesman David Bowman said in an e-mail.
Still, a match shortcoming could "adversely affect its funding for the following year," Bowman said.
Assembling in Charleston earlier this month, leaders from the South Carolina HIV/AIDS Care Crisis Task Force - leaders from a host of AIDS agencies - discussed ways to secure more state funding in the upcoming legislative session.
They plan to draw attention to the economic impact of the disease, said Gaddist, who also leads the Crisis Task Force. Paying for medication saves money by keeping the sickest patients out of the emergency room and hospital stays.
The drug assistance program "keeps them well and keeps them working, contributing to our economy instead of being a liability," Gaddist said.
Charleston resident Andrew Petersen, who spent a day in the hospital shortly after being diagnosed with HIV in 2007, explained how costly a hospital stay can be. He was treated for dehydration and had a battery of tests done for pneumonia and other illnesses.
"One day cost $5,000," he said.
Unlike Petersen, whose insurance covered the costs, most patients with HIV are on government assistance programs, Gaddist said.
"Every time they have to go to the hospital, we have to pay," she said.
The cause, Gaddist said, is desperate for a legislative champion.
Many South Carolina AIDS experts point to one key legislative supporter: Rep. Joseph Neal, a Democrat from Richland.
Neal acknowledges AIDS is not an issue that has gained traction with his colleagues, despite statistics that show the disease is spreading in the rural South, mostly because of a lack of education and access to care.
Almost 700 new cases were reported in South Carolina in 2008, according to the Centers for Disease Control and Prevention.
"The danger is we're not necessarily seeing it as the health emergency it is," Neal said. "People don't feel at risk. They think it's a black disease or a homosexual disease - that it will be contained in that community."
Despite the Crisis Task Force's efforts, clinics are preparing for the worst next year.