Access to treatment in the USA: waiting list for ARVs in South Carolina

At the end of 2006, an article in the New York Times highlighted that more than 350 poor people infected with HIV are on a waiting list for free life-saving drugs in South Carolina, by far the longest such list in the country.

Four people waiting for drugs supplied by the state have died, and the wait for treatment was reported as six months to a year.

The list is so long largely because the Legislatures contribution to the drug program is relatively tiny less than one-twentieth of North Carolinas, for example even though South Carolina has the ninth-highest AIDS rate and the fifth-highest HIV infection rate among states that record such data.

Theres only two ways to get off of the wait list right now, said Karen Bates, one of a group of South Carolina HIV patients who have demanded that the state take emergency action. One of them is if somebody else dies and you get their slot. The other is if you die.

The program serves about 1,300 people a month, and patients are eligible for it if they are uninsured and cannot afford the drugs, which cost an average of $885 a month. State officials say it would cost South Carolina $3 million to clear the waiting list. The only other state with such a list right now, Alaska, has 13 people waiting. The number of states with waiting lists fluctuates.

Most of the money for the medication programs, known as the AIDS Drug Assistance Programs, comes from the federal government, supplemented by the states. In the South, the only region of the country where the number of AIDS deaths continues to rise, some state contributions have increased greatly.

North Carolina, which once had a waiting list of more than 800 people, now pays for 40 percent of its drug program, contributing $11 million a year. Georgia pays for 26 percent of the program, or $12 million. South Carolinas contribution, by contrast, has stayed at 3 percent, or $500,000 a year, even as demand has increased and federal financing has stayed flat.

State health officials said that all but 10 of the people on the waiting list were now on so-called patient assistance programs, a stop-gap measure in which drug companies provide free medications for a limited time. If a patient needs drugs from more than one manufacturer, an application must be submitted to each, and experts say many do not get all the drugs they need, reducing the effectiveness of those they do get.

The state began training caseworkers to complete the paperwork for the programs last summer when the waiting list started, Ms. Kettinger said, but she could not say how long it took until people began receiving drugs. She also declined to say if the four who died were receiving drugs through such a program.

The waiting list is only the most visible symptom of the lack of financing for AIDS prevention and treatment in South Carolina, where poor rural counties are among those with the highest rates of transmission and the biggest stigma.

Thats just the focus right now, said Stephanie Williams, who is HIV positive and a founder of the South Carolina Campaign to End AIDS. You have housing issues, you have transportation issues, you have clinics where the doctors dont want to touch people. We have all kinds of problems.