GMHC Treatment Issues
Volume 11, Number 2   February 1997, page 4

Commentary
A Retro Retrovirus Conference
by Dave Gilden

        The Fourth Retrovirus Conference was marked by authoritarianism
and unpleasantness. A multitude of guards and rules greeted Conference
goers. Seventeen activists who arrived unregistered were not allowed in;
pharmaceutical marketing representatives who tried to give up their
registrations in favor of community physicians found that that was not
allowed. Any complaints were met by the argument that the restrictions
were necessary to preserve the Conference’s supposed scholarly and
intimate atmosphere. To this end, the conference first and foremost
limited attendance to 2,100 people "actively working in the field of basic
science and clinical investigation." All in all, thousands who would have
attended an open conference were disinvited from the major U.S. AIDS
conference of the year.
        Hardest hit by the exclusions was the AIDS community–local
healthcare providers, activists and people with HIV alike. The exceptions
were 60 people who were allowed to register as "community press" and 20
people "affected by AIDS" given full scholarships (out of 150 who
applied). Both categories were expected to spread the conference news to
their constituencies. By obstructing access, the conference organizers
are disrupting a long-standing natural alliance between the AIDS and
scientific communities. The result of that alliance has been better funded
and more rational AIDS research programs.
        It was recognized years ago, after considerable struggle, that
people with HIV have an intrinsic right to attend scientific conferences,
whether they communicate the news to anyone else or not. The information
they glean will help save their lives as they confront a health care
system that is inept in the best of times. Scientists who don’t feel an
obligation to help those at the center of their research are out of touch
with human concerns.
        The great irony is that there was little discussion at the
Conference. The oral presentations mainly consisted of review lectures
conducted in large, overcrowded halls. And, actually, these reviews would
have been very valuable to the practicing doctors, nurses and patients in
little evidence at the Conference. Most of the real news was stuffed into
two one-day poster sessions, in which hundreds of displays stood
side-by-side in a large basement room. You can only absorb so many posters
at a time: glazed eyes were epidemic.
        In the end, the pharmaceutical companies controlled the wider
public’s perception of the Conference. Their tailored presentations went
largely unchallenged — community people, motivated as nobody else,
frequently ask the most incisive questions at conferences. And the news
media, starved for direct access, was forced to rely more than ever on
company press releases.
        Did any of this really bother prominent researcher Douglas
Richman, chair of the Conference’s program committee? We doubt it. Dr.
Richman is frequently a star at much more commercialized affairs, most
recently the Conference on Drug Therapy in HIV Infection last November in
the U.K., with its flashy trade show and array of company-sponsored
symposia.
        Wherever he appears, Dr. Richman always argues forcefully for
early, aggressive treatment of HIV. Can people with HIV trust such
experts? Community members need to be at these scientific meetings — in
force– to make their own voices heard.

                                                – Dave Gilden

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-Giacomo
 Giacomo’s Cabaret, http://www.panix.com/~jscutero