AEGiS-GMHC: Commentary: A Retro Retrovirus Conference

Important note: Information in this article was accurate in 1997. The state of the art may have changed since the publication date.

Commentary: A Retro Retrovirus Conference

Treatment Issues, Vol 11, No 2; February 1997
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.

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Copyright © 1997 - Treatment Issues. Reproduced with permission. Treatment Issues is published twelve times yearly by GMHC, Inc. All rights reserved. Noncommercial reproduction is encouraged. Subscription lists are kept confidential. GMHC Treatment Issues, The Tisch Building, 119 West 24th Street, New York, NY 10011 fredg@gmhc.org http://www.gmhc.org

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