January 10, 2007

Waiting to Exhale: South Carolinians Brave the ADAP Gap

Kiah Graham has been waiting almost a year now for the state of South Carolina to find him the meds he needs to treat his HIV, but he’s not waiting quietly. “I called my general assembly member, the governor’s office, people in Congress and the health department,” says the 24-year-old Clemson resident, who had to drop out of school last year because his untreated virus so completely sapped his energy.

Graham is still alive and kicking—and back in school—having finally snagged free drugs from a pharmaceutical company. But four HIV positive South Carolinians died in 2006 while waiting alongside Graham to get their share of meds from the AIDS Drug Assistance Program (ADAP), a federal treatment safety net that’s managed by states.

The alarming news out of South Carolina lately has shone a harsh light on the state’s ADAP program and its seemingly endless waiting list—with 369 names, it’s by far the longest in the country. South Carolina has the fifth highest rate of new HIV infections but supplements federal ADAP money much less than other states in the region, paying just 5% of what North Carolina does, for instance.

Why the stinginess? A range of factors are in play, but state Rep. Joseph Neal smells a rat. “I think there’s a perception among legislators that AIDS is not an issue for the majority of South Carolinians,” says Neal. “And I think some see AIDS as a Black disease.” Indeed, something like 80% of HIV positive South Carolinians are African American.

Neal has been pushing for years to steer more of the state budget into HIV programs. He spearheaded a grassroots prevention initiative that last year pressured legislators to pass a statewide project called Project FAITH. And he’ll be presenting a treatment initiative to his colleagues in the legislative session that just opened in Columbia this week—seeking $8 million for fiscal year 2008.

Only quick action from state legislators will truly fill this ADAP gap. Meantime, South Carolinians are doing what they can to stay afloat—calling legislators and also talking to ASO case managers and HIV support groups about finding meds, like Graham did, through pharma-sponsored assistance programs (PAPs). All but 10 of the waiting list’s 369 are now on PAPs, according to Lynda Kettinger, state HIV/STD director at South Carolina’s health department.

Getting a PAP for each and every drug in your combo can take a long time, however—and not everyone can handle a delay. Undiagnosed South Carolinians show up all the time with late-stage AIDS. “We had a patient who started on the waiting list but was quickly moved into a PAP and then into Medicaid, which she was on at the time of her death,” recalls Bambi Gaddist, executive director of the South Carolina HIV/AIDS Council. “We need resources so that people can go from a diagnosis [directly] into treatment.”

Says Kettinger of PAPs, “It’s not the desirable long-term approach. It’s just what we have to use right now while we’re in this crisis.” That is: ADAP-t.

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