Four or five months ago, Eric Camp, one of Arkansas’s best known AIDS advocates, wrote an open letter announcing his intention to quit: Too much to do, too few people willing to help, and a state government that seemed less and less interested.
He’d just had to postpone a “summit” of people interested in renewing efforts on behalf of the HIV positive in Arkansas because so few people signed up to come. After a year off all his anti-viral medication — a step he took to protest lack of state funding for AIDS drugs for low-income Arkansans — he was, literally, sick and tired. Once the rescheduled summit was over in mid-January, he was through.
It’s now been a month since that meeting, which drew about three dozen people. The plight of people with HIV in Arkansas is as dire as it ever was. Even a promised Band-Aid to keep the AIDS Drug Assistance Program — a last-resort program, largely funded by the federal government, to get AIDS medication to about 400 low-income patients — solvent through the end of its fiscal year in March is iffy.
But Camp is optimistic enough about the future that he’s dropped his plans to quit AIDS advocacy. There’s a new AIDS advocacy steering committee in place, with elected officers, a manageable list of priorities, and a recent enough airing of grievances (a natural result of putting unhappy people in the same room with each other and with the government agents assigned to help them) to keep infighting at bay for awhile. The new group’s first event, an AIDS advocacy day at the capitol, is set for March 9.
“As it grows, and people learn how to become advocates — there is that real power of being able to bring about social change,” said Camp, who was a radio journalist in what seems almost another lifetime, before he was diagnosed HIV-positive in the early 1990s. “I’m far more hopeful than I have been in years that this group with be able to do that.”
But there are more than enough potential problems out there to derail the new group’s efforts. They’ll be fighting an uphill battle in the legislature, both because education funding is still a behemoth and because AIDS is still so widely thought of as a gay disease.
And Gov. Mike Huckabee, four years ago an open advocate of state spending for AIDS drugs, hasn’t even mentioned funding AIDS services as part of the “health” leg of his letter-H priorities tripod. He turned down a request to shore up the ADAP program with money from his own $500,000 discretionary fund, instead saying ADAP clients could get their medications through the drug companies’ own programs for low-income people with HIV. (Called “patient assistance programs,” they’re not a workable solution because of the immense amount of paperwork involved, Camp said. He said this often leads to patients missing doses of the medication — a worse problem for the HIV-positive than for, say, someone with high blood pressure.)
They do have an ally in Rep. Jay Bradford, D-Pine Bluff, who’s been willing to talk about the financial folly of electing not to pay for anti-viral drugs now, which sets the government up to pay the much higher costs of treating full-blown AIDS later.
The state Health Department’s AIDS division is still dealing with the aftermath of a financial scandal that came to a head last fall — $350,000 in AIDS program money was either misspent or poorly documented — and tainted some independent AIDS organizations by association. It remains unresolved, although the Health Department replaced the division’s director with a man named Gary Horton, who has a couple decades worth of experience in the AIDS division but hadn’t worked there for several years. He’s promising complete openness, but there’s a good deal of lingering mistrust among AIDS advocates.
Camp is sympathetic — the new AIDS division staff “inherited a train wreck,” he said. But communication between the department and the AIDS advocacy community “has to get better,” he said.
That Band-Aid for the ADAP program devised by Horton relies on $390,000 in money originally slated for housing services — adding to existing tensions within the AIDS advocacy community over how to divide up a very limited funding pie among AIDS-related needs. (About 85 people are on a waiting list for Arkansas’s AIDS housing program, according to Sandra Wilson, director of the Arkansas Supportive Housing Network. “If people are homeless, they don’t get medication,” she said.)
At best, it’s a temporary fix that’ll keep the program running for another six weeks or so. But government rules say the housing money can only be used for medication in emergencies, and only on a case-by-case basis. Looking beyond the end of March, Horton is asking the state legislature for $1.6 million in state money for the ADAP program for 2005-07 — an amount he says is adequate and “realistic,” but that Camp and other AIDS advocates say isn’t enough to cover any new HIV cases diagnosed in the next two years.
“We thought it best to ask for what we truly need,” Camp said. “…We may not get it, but it’s important that the actual need get stated.”
And, of course, there’s the apathy that helped kill many of the state’s now-defunct AIDS organizations in the first place. Once people with AIDS stopped dying, volunteers found other things to do, and many HIV-positive people were themselves able to get back to a virtually normal life.
“We don’t have the committed individuals who want to give the time and money it takes,” said Cornelius Mabin, a member of the board of the Arkansas AIDS Foundation and a longtime AIDS activist.
So what is the new group hoping to accomplish? They’ve chosen to focus on funding for the ADAP program, increasing access to Medicaid (AIDS patients can’t now get on Medicaid until they’re very sick), and making sure that people who have to rely on drug companies’ patient assistance programs have enough help to navigate the paperwork.
As for Camp, after more than a year off his anti-viral medication, his options are limited even if the ADAP program is fully funded. You can’t start and stop with AIDS drugs — miss even a dose or two, and the virus in your body can become resistant to the drugs you’d been taking. Camp’s a lot sicker than he was a year ago, but he can’t imagine doing anything differently. By limiting the ADAP program to existing clients only, “They were telling me my access to medication was more important than that of a woman who’d just given birth in the hospital,” he said.
Camp said he’s realistic about the new advocacy group’s chances of success this year with the legislature, but he’s not discouraged.
“We’re not going to get a dime if we don’t ask for it,” he said. “And I think this year we’re going to ask for it very strongly.”