Waiting List for AIDS Drugs Causes Dismay in South Carolina
By SHAILA DEWAN
The New York Times
December 29, 2006
COLUMBIA, S.C. — More than 350 poor people infected with H.I.V. 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, said Lynda Kettinger, the director of the state health department’s H.I.V. division, and the wait is six months to a year.
The list is so long largely because the Legislature’s contribution to the drug program is relatively tiny — less than one-twentieth of North Carolina’s, for example — even though South Carolina has the ninth-highest AIDS rate and the fifth-highest H.I.V. infection rate among states that record such data.
“There’s only two ways to get off of the wait list right now,” said Karen Bates, one of a group of South Carolina H.I.V. 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.
Kelly Jepson, 43, who is on the South Carolina waiting list, said the uncertainty had only added to the stress of being homeless, unemployed and a recovering drug user.
“I was trying to keep a job, pay for methadone, pay for a place to live, and I just couldn’t swing it all,” Ms. Jepson said, adding that she had recently been hospitalized for 10 days. “Dementia has set in, my short-term memory is really bad, and because of neuropathy I’ve had a couple of bad falls.”
Another AIDS patient on the waiting list who had agreed to be interviewed from his hospital bed, could not be reached because he had gone into intensive care.
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 Carolina’s contribution, by contrast, has stayed at 3 percent, or $500,000 a year, even as demand has increased and federal financing has stayed flat.
Clair Boatwright, a spokeswoman for the South Carolina health department, said the department would request $3 million in supplemental money for the remainder of this fiscal year and a $4.5 million increase in annual financing when the Legislature convened on Jan. 9. Right now, Ms. Boatwright said, the department has no emergency money available to reduce the waiting list and no uncommitted cash to shift to the drug program.
State lawmakers said the paltry contribution to AIDS financing was less because of conscious opposition on the part of Republicans, who controlled the Legislature, and more because there had been no strong push for an increase.
“I don’t think it was an issue where these guys were opposed to it,” said Representative Leon Howard, a Columbia Democrat who has served on the health committee for 12 years and recently became its chairman.
Mr. Howard said he could not recall a debate over AIDS money.
Because of the budget shortfall, state health officials, doctors and AIDS workers have begun preparing what they said was the first organized campaign to push AIDS financing onto the legislative agenda. Leading the effort is Representative Joseph H. Neal, a Democrat whose district includes Columbia. State financing has lagged, Mr. Neal said, not because of strong political opposition, but because the issue has remained low profile, and legislators do not understand that a lack of treatment translates into higher costs in hospitalization and lost productivity.
“To be honest with you, I think it’s seen as a black disease, it’s a poor people’s disease, and it’s easy to put these kinds of issues that are seen in that light out of mind,” said Mr. Neal, who is black. “These are people that are politically impotent and are not seen as part of the mainstream.”
Carmen Julious, director of Palmetto AIDS Life Support Services in Columbia, agreed that ignorance played a crucial role.
“You would be surprised at state and federal legislators who understand AIDS in Africa,” Ms. Julious said, “but they don’t know anything about AIDS in South Carolina.”
AIDS activism has long been surrounded by a debate over how confrontational advocates should be, and the South Carolina situation is no exception. The four deaths threw a wrench into the carefully laid lobbying plan, drawing protesters from outside the state and, in a place where the disease still carries a stigma so heavy that patients often do not tell their own family that they are infected, prodding H.I.V. and AIDS patients to speak out even after some groups advised them to wait.
“I’m tired of being quiet about it,” said Kiah Graham, 24, who said he was on the waiting list. “All it’s going to take is one cold, or pneumonia, and it’s over with.”
Bambi Gaddist, director of the South Carolina H.I.V./AIDS Council, and others in the coalition were quick to point out that there was no way of knowing whether the four deaths were caused by lack of drugs. Because of poverty, scarce money for testing and prevention, and the secrecy surrounding the disease, many H.I.V. infections in South Carolina are not discovered until they are already in the late stages, they said, making them more difficult to treat.
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.
“That’s just the focus right now,” said Stephanie Williams, who is H.I.V. 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 don’t want to touch people. We have all kinds of problems.”
