Document:Report from Vancouver

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Report from Vancouver
by Celia Farber

Spin magazine
October 1996


Seen from above, B.C. Place, the white-domed stadium where much of this years International AIDS Conference in Vancouver was housed, looks exactly like a pill. It strikes me as an accidental geographical icon to the faith of modern medicine. Many of the 15,000 people who came here this year – to a conference that had more hope to offer than ever before – are seeking salvation in the form of not one, but as many as two dozen, pills per day.

The AIDS conference is less a scientific arena than a great indoor marketplace for data and drugs. In a vast exhibit hall at ground level, the pharmaceutical giants dominate the space with elaborate structures, fitted with lounges, plants, carpets, and video screens promoting their goods. The biggest of all – Glaxo Wellcome, the mother of AZT – has a two-story structure, complete with spiraling staircase and an upstairs bar. Keep walking and you hit the shantytown, just like in a real city. Here, smaller organizations and activist groups have set up their tables and stalls, loaded with pamphlets, books, T-shirts, stickers, condoms.

There's something for everyone: medical marijuana, a photo-developing chemical for Kaposi's sarcoma lesions, a doctor who says HIV is a man-made virus, and, right next to him, a man who hands me a bottle of water and tells me it has infinite magical properties. I finger the bottle in my pocket as I stroll around, amid the din of voices and pill-promotion videos, and think, Who the hell knows?

What drives this enormous machine? The will to sell? To dominate? To cure? Probably all three. We are just emerging from the era of AZT and its cousin drugs, which were approved on a wing and a prayer, massively hyped, overdosed, and overprescribed, all without saving or even prolonging any lives.

Those with a sense of history can't help but be a little skeptical about the great white hope of this year's conference, a three-drug "cocktail" therapy typically involving two nucleoside analogues and one protease inhibitor. The latter class of drugs, recently approved by the FDA, is aimed at disabling HIV by attacking its protease enzyme, and using it in combination with earlier drugs has proven infinitely more successful in lowering detectable viral load than treatment with AZT, DDI, or 3TC alone.

There is compelling new data in the preliminary studies, but it has not been borne out by the ultimate test of time. In some patients, the drugs appear to have lowered HIV to undetectable blood levels. Researchers speculated in Vancouver that one to two years of aggressive therapy could "clear" the virus from the system. But if there are two major camps in AIDS research right now, only one of them – the one focused on attacking the virus – would define such viral clearance as a cure.

The other camp, where many immunologists reside, sees the key to successful AIDS treatment in rebuilding the damaged immune system. The paradox of the new cocktail regime is that while it may bust the virus, it is highly toxic and highly deleterious to the immune system. And no one yet understands the precise relationship between lowering viral load and continued health and long-term survival. "They've been able to lower viral load for a long time," says AIDS researcher and doctor Joseph Sonnabend. "Many studies have shown that the improvement is short – between three months and a year – and then the effect wears off. I'm very concerned about all this hype." Nonetheless, he confirms anecdotal reports that the new drug combo has brought some patients back from death's door. Other anecdotes suggest, however, that some people have a burst of improvement and then take a nosedive. And there are those who cannot tolerate the drugs at all.

Sonnabend says that the success stories in his New York City practice have been limited to those who are gravely ill. "What I'm worried about is that the AIDS research establishment is aiming to get everybody on these drugs," he says, "and there are no data whatsoever to support their use in asymptomatics." Other researchers say early intervention is justified because HIV is now believed to do considerable damage to the immune system early in the course of infection.

The real test of this research lies in discovering what happens when people go off the drugs, as the new drug regimen may not be suitable for long-term use. If no signs of the virus reappear, clinical AIDS research will have scored its touchdown. But even that won't necessarily mean a cure – what really matters is what happens to the person, not the virus. The new drug regimens – involving 15 to 20 pills per day – can cost $20,000 per patient per year, and are supposed to be used only with extreme consistency to protocol. In theory, missing a single dose can give the virus a chance to mutate, making the patient a liability to the public. Still more disturbing are rumors spread at the conference that the new combination-drug protocols will be tested on pregnant HIV-positive women – in Africa.

The science of this disorganized and user-unfriendly conference was framed, if not eclipsed, by an excess of AIDS kitsch. The conference slogan, "One World – One Hope," was accompanied by a Star Trek-like arm gesture, performed en masse at the opening ceremony. The theme song, delivered by a brightly-clad chorus, featured nonsensical feel-good lyrics: "We all show unity / With one mind / One thought / One heart / One world."

This symphony of positive groupthink was emphatically punctured by the fury of a virulent mutation of the AIDS activist group ACT UP. Boasting perhaps 20 members, ACT UP San Francisco is a small but explosive band of anarcho-activists that came into existence four years ago, when a political split cleaved the San Francisco chapter into two factions. (The other, more mainstream group is now called ACT UP Golden Gate.)

ACT UP S.F. seeks to draw attention to what it sees as the real demons of AIDS research: systemic conflicts of interest, the co-opting of activists by the AIDS "industry," and the marketing of toxic drugs. While ACT UP always rode herd on a system plagued by bureaucracy and greed, it accepted that system's basic raison d'etre. ACT UP S.F. by contrast, has declared war on the entire machine, perhaps reserving its greatest ire for the activist community to which it once belonged.

In fact, the rebel faction wants to overturn the very credo that ACT UP was founded on – "Drugs Into Bodies," the notion that the faster drugs get approved and into human bodies, the better. "We think 'Drugs Into Bodies' is a recipe for disaster," says ACT UP S.F. member Michael Bellefountaine. "We think it is these drugs that have killed our friends."

On the third day of the conference, ACT UP S.F. members stormed to the front of a crowded hall where a panel of antiviral experts were conferring. "Chemotherapy killed our friends! Ban AZT!" the invaders shouted, pouring fake blood over the group of eminent researchers. Mayhem ensued. Margaret Fischl, who conducted most of the AZT trials for Burroughs Wellcome, burst into tears; Paul Volberding, of San Francisco General Hospital, started yelling back at the activists. According to Todd Swindell of ACT UP S.F., Volberding shouted at him, "'I love you. I love you. I love you.' I screamed back, 'I dont love you. I fucking hate you. You killed my friends!'"

Once the protesters had left the room, a member of ACT UP New York took the mike to denounce them as impostors. Principal ACT UP chapters around the world have followed suit. The ideological difference between the two camps is sharply drawn: When the old guard shouted murder, they meant it in the abstract, as the final result of bureaucratic foot-dragging. But the new radicals mean it literally – not that people died because they didn't get drugs but that they died because they did get drugs. Each side holds the other accountable for death, either for embracing treatment regimens or for resisting them.

Beneath its extremist antics, ACT UP S.F. has a rather conservative message: AIDS research should focus on the immune system – so-called cellular immunity – and not just the virus. In this it is supported by a growing faction of mainstream researchers. Research has shown, for instance, that long-term HIV/AIDS survivors have high levels of CD8 cells, which are destroyed by antiviral drugs, including the new protease inhibitors.

At the Vancouver opening ceremony, these competing philosophies are boiled down to dueling chants. "Toxic chemotherapy, no cure for AIDS!" accuses ACT UP S.F. "We want choices, not insane voices!" comes the retort from ACT UP Golden Gate.

"These people are violent and fanatical," says one longtime member of ACT UP New York, who, like many activists, was more enraged over the San Francisco interlopers than anything else at the conference. "They violate everything that ACT UP is about."

"Honey, we are exactly what ACT UP is about," responds Bellefountaine, in a voice hoarse from screaming. "People with AIDS fighting for their lives."

© 1996 by Celia Farber
Originally published in Spin magazine