When it comes to fighting AIDS, hope is a rare and precious commodity. A tiny bit appears now and then like a drop of rain in the desert, and those who are dying of thirst can’t help but imagine they’re caught in a flood.
Still, you’d have to have a heart of granite not to feel a bit of hope after reading the protease inhibitor news. I know several people who feel healthy for the first time in years thanks to the new drug combinations. Suddenly they find themselves imagining once unimaginable futures. Yet the way in which the news has been delivered–and the way that it continues to relegate nonscientific strategies to near irrelevance–is truly a cause for despair. A recent front-page story in the Wall Street Journal heralded protease inhibitors as “glimmers of a cure” in its first sentence. “Scientists may finally have cornered the long-elusive virus, attacking it with unparalleled force from so many sides that it doesn’t readily escape and spread as it has before.” Researchers are portrayed as valiant, conquering war heroes; they, rather than people with HIV, have suffered through “a decade of disappointment and frustration.”
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Yet the victories of science are repeatedly imagined as the only victories when it comes to fighting AIDS, though they tend to come with nasty side effects, high price tags, and unchanged mortality rates. Nearly every other effort to deal with the epidemic is treated as a stop-gap measure, assigned to the occasional human interest column, not-for-profit newsletter, or lefty trade paperback detailing the “social” impact of AIDS. But in keeping with 200 years’ worth of public health trends when it comes to fighting infectious disease, community-based efforts have had the most profound impact on the quality of life for those dealing with HIV–and they’ve been the only interventions that have prevented infections from occurring in the first place.
Early safe sex efforts worked in large part because they were decidedly nonclinical, as much about community empowerment and political resistance as they were about public health. Facing an indifferent government and an often paranoid press, which helped to label gay sex as the primary source of the disease, community leaders dared to keep gay sex sexy, encouraging men to express their sexuality in safer but no less exciting ways.
At this year’s AIDS conference, one high-profile program offered real hope that science might have to share its pedestal, at least for a few hours. The University of Alabama at Birmingham sponsored a “live, interactive video teleconference” featuring several prominent community advocates: Phill Wilson, founder of the National Black Gay and Lesbian Forum; Moises Agosto, director of research and treatment advocacy for the National Minority AIDS Council; Dawn Averitt-Doherty, executive director of the Women’s Information Service and Exchange; and Martin Delaney, founder of San Francisco’s Project Inform. The program, billed as a summary of the conference’s important highlights, was beamed to numerous cities across the U.S. direct from Vancouver, the site of this year’s conference. Only one physician sat on the first panel, Michael Saag, associate professor of medicine at the University of Alabama at Birmingham and director of its AIDS outpatient clinic. It seemed reasonable to expect that the viewing audience might learn practical ways to combat the disease at the community level.
At this year’s International AIDS Conference, four plenary sessions focused on prevention efforts, as did at least eight skills-building workshops, ten poster presentations, and 25 breakout sessions. Yet, for the entire two-hour community update, the need to keep people from becoming infected was never mentioned. This tack may have come as a relief to pharmaceutical giant Glaxo Wellcome, which underwrote the teleconference, since it can’t patent behavior modification or sell protease inhibitors to uninfected people.
One panelist thought it “encouraging” to start prescribing protease inhibitors to patients with more than 500 T-cells, who until recently might not have been given any drugs at all (before protease inhibitors, doctors typically did not prescribe antiretrovirals until someone’s T-cell count fell below 500, sometimes not until it fell below 200). Another emphasized, without any evidence to back him up, that perhaps everyone who is HIV positive should start taking the triple-drug combination, even those with well-functioning immune systems. They were deemed healthy until protease inhibitors came out of the pipeline.
