IDSA '97: Conference Without Activists
About 3500 doctors, mostly infectious-disease specialists, attended the 35th Annual Meeting of the Infectious Diseases Society of America, in San Francisco, September 13-16 (IDSA '97). We only saw three AIDS activists, including this writer, registered for the meeting, and three others who managed to attend some sessions. Many more wanted to go, but were kept out by rules apparently designed to prevent community participation.Activists often attend conferences as press, covering the meeting for AIDS or other publications. This year the IDSA meeting gave press credentials only to "broadcast media or general-circulation magazines," clearly excluding treatment newsletters like AIDS Treatment News. There were no scholarships for people with AIDS. You could pay to go, as we did -- $240 at the door, $180 with early registration. But most people with AIDS and most treatment organizations cannot easily afford that cost, and most reporters refuse on principle to pay for the right to cover news. Few journalists of any sort came to this meeting, where much information important for public health was presented. We saw only one press badge in our four days there.
The issue matters because access and AIDS reporting at major conferences is essential if people with HIV and their advocates -- and those working on other diseases also -- are going to be well enough informed to continue contributing leadership in making clinical research productive, workable, and ethical. AIDS has been a model for patient empowerment -- which is much of the reason for rapid medical progress in HIV disease. Those whose lives are at stake bring an immediacy and practicality to the table that few others do. Without their influence, medical research is guided less by medicine or science than by money -- within a system of market distortions where capitalism can seldom force the efficiency it does in some other areas. Neither the public nor most professionals yet appreciate the lost opportunities and lack of productivity that result, and the countless lives lost that could otherwise be saved.
The access to meetings issue in AIDS had been settled several years ago. Now there is a backlash toward the ivory tower and the old-boy networks.
It is important to understand that almost all of the backlash involves only two conferences (the annual Retroviruses conference, and now the IDSA San Francisco meeting). And almost all of it is due to no more than four people, perhaps considerably fewer. Three of the four members of the steering committee which ran this year's Retroviruses conference were also on the steering committee for the San Francisco meeting. One or two people who are hostile to community participation can have much influence, since most physicians and scientists have little interest in meeting arrangements.
There are many smaller closed meetings in AIDS; this is seldom an issue. The problem arises when some of the world's major conferences, which report research largely funded by taxpayers, arbitrarily exclude community participation, refusing to negotiate workable arrangements with groups which have a legitimate stake in the research and reasons for being there. Organizers of the IDSA '97 meeting repeatedly said it was not an AIDS conference. But 240 of the published abstracts use the word 'HIV', 8 of the 31 session tapes for sale are clearly AIDS-related, and even the program book's cover is illustrated with a picture of HIV. And many other infectious-disease issues, such as antibiotic resistance, are vitally important to persons with HIV disease.
Much of the credit for public funding of AIDS research belongs to activists. Most organizations sweat and pray for greater public involvement in their cause. AIDS has people devoting their lives to supporting medical research. Excluding them from the information they need is a formula for stagnation.
