VIRUSMYTH HOMEPAGE
REPORT FROM VANCOUVER
AIDS; Words from the Front
By Celia Farber
Spin Oct. 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.
Theres 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 cant help but be a little skeptical about
the great white hope of this years 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 deaths 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 systems basic raison dtre. 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
didnt 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." *
VIRUSMYTH HOMEPAGE