A few weeks ago, Joey said he wasn't going to take the new treatments, which center on new anti-virals called protease inhibitors. By implication, he was saying he had resigned himself to an early death.
It may seem strange for someone with AIDS to falter on the borderline of hope. (The new drugs have so lowered the viral load in some patients that it's no longer detectable.) But Joey, and other people with AIDS, has plenty of reasons to be unsure.
First there's the toxicity. Many people can't handle the new treatments. "I'd rather not take it and have my life shortened than deal with all the discomfort," Joey says after he hears that some patients are confined to bed by the nausea and diarrhea that attend protease inhibitor regimens. And for reasons that are still unclear, the drugs simply don't work for some. Finally, there's the cost, an astronomical $10,000 to $20,000 a year. Though not a problem for Joey, who's covered by Medi-Cal, it is for many.
But less than a week later, Joey and the physician's assistant who oversees his case at San Francisco General Hospital's Ward 86, one of S.F.'s clinical epicenters of the pandemic, agree that he should try Crixivan, a protease inhibitor, and two other anti-viral drugs, 3TC and d4T. "I've done a lot of soul-searching, and I'm going to do it," he says.
Now that Joey has unmoored himself from the certainty of death, he has to deal with something nearly as terrifying: an ambiguous future.
"I'm tired of being a guinea pig," he says.
If the new treatments fail him, Joey will be back to square one: poor (he makes less than $11,000 a year) and facing an expensive and deadly disease. Worse yet, the virus in his body will have developed immunity to protease inhibitors, making it less likely that any of the many promising drugs in the pipeline will be able to have an effect.
If that proves to be the case, Joey will have to rely on the array of social services for people with AIDS that he's availed himself of since he started to turn his life around in 1987, after learning he was HIV-positive. He will need housing first, and finally a hospice bed in which to die with dignity. He will need help with food programs and other necessities. And counseling for the depression that creeps into his life now and then.
But protease inhibitors have done more than introduce the troubling concept of a future into Joey's life; the arrival of the treatments has eroded support for the very services he will be dependent on if the drugs don't work. Strangely, AIDS-specific social services have become a new target in the war against AIDS, with some activists arguing that they drain away money that should go for buying the new drugs.
So it's pretty obvious why the future is a riddle for Joey; why, like some, he isn't ready to jump for joy and announce the end of the AIDS crisis. Hope so thoroughly attenuated is really no hope at all.
The new drug therapy has had a profound effect on the pandemic. On a purely conceptual level, it puts thinking about AIDS in disarray. Is this the beginning of the end, or merely the end of the beginning? In hospitals and clinics, doctors are struggling to reimagine practices that have been defined for so long by the assumption of death.
But the most fractious changes brought on by protease inhibitors, at least in S.F., have taken place in the realm of AIDS politics, where a branch of activists has turned against the very service providers they once fought for.
On one side of the divide stand treatment advocates. They believe the nonprofit agencies that provide social services like housing and food banks to people with AIDS have grown fat and lazy and unresponsive to the new needs, specifically access to protease inhibitors.
"We are just warehousing people," says Jeff Getty of ACT UP Golden Gate. "It's time for the warehouses to start dispensing medicine."
How soon and to what degree? The answers can get wobbly from the spin put on them by the more-money-for-drugs crowd.
First, Getty says services and drugs are both important. But, when money grows tight, which he believes it will, he says drugs should be the priority. "If there isn't enough money, we will have to scale back on services to make sure that the drugs are paid for," Getty says.
He adds, "This is a disease first and foremost. We shouldn't be creating a welfare system in the name of HIV. I wonder what's next? HIV-positive food stamps?" (Getty's position is colored by his own struggle with AIDS. After his world-famous baboon bone marrow transplant last year, he went on protease inhibitors and his viral load doubled -- a sign of failure -- so he gave up. His political position is formed around the notion that more and better drugs are coming.)
If Getty is cagey, others are more blunt. As Jerry Joshua de Jong, former executive director of 18th Street Services, a nonprofit AIDS service agency, writes in the Jan. 9 issue of the Bay Area Reporter, "It is time to make these [new] drugs available, and the only way to do that nationwide is to dismantle the AIDS service industry."
De Jong's opinions carry weight. He has also served as an AIDS Office staffer and was a founder of the Tenderloin AIDSNetwork.