Project Inform - March, 1997

Despite support for some of the changes, many people found the "cure" worse than the problem. Critics, including Project Inform and almost every other interested AIDS organization, argued that there was nothing "intimate" about a meeting of 2400 people and that HIV-affected people had an absolute right to attend. HIV-affected people had not been denied access to any major AIDS meeting for the last several years. Critics were also unanimous in condemning the restrictions that denied access to thousands of practicing physicians and AIDS researchers, including many well-recognized names in science and physicians responsible for the care of tens of thousands of patients. Some also argued it was shortsighted to place severe restrictions on industry, as it alone can turn scientific insights into practical products. By making industry an unwelcome party, many feared that it would discourage participation in AIDS research. Surely, it should be possible to cut down on promotional activities without telling a key partner in AIDS drug development to stay home.

Beneath the debate, which eventually erupted in the form of a raucous protest at the conference site, was a deeper and unspoken question: exactly who is in charge of this conference and who appointed them? It has become one of the most important AIDS meetings in the world, yet it is controlled quite literally by a handful of more or less self-appointed people. While those involved are respected scientists, too much power lay in the hands of far too few people. Despite a modest number of people on a Scientific Advisory Committee and a few non-voting community representatives, four people made all the key decisions. Even their close friends described the leadership of the meeting as an oligarchy. Their preferences, views and outlook impacted every aspect of the conference. This represents a dangerous precedent, as it was clear that there was little room for even slightly dissident voices in the scientific makeup of the meeting.

Equally troubling was the fact that members of the "Scientific Advisory Committee" were numerically over-represented in the abstracts and papers accepted at the meeting. A disproportionately high percentage of people who had two or more papers accepted were themselves members of the Committee. Another example, and a contradiction of the claimed effort to minimize industry promotion, was the acceptance of no less than eight papers about a new drug under development by Abbott Labs. The drug, at least two years away from practical application, had not yet been tested in a single HIV-infected person and hardly warranted major attention. How could such a drug be so vigorously promoted? Easy - Abbott Labs was the sole pharmaceutical company with a representative on the "Scientific Advisory Committee." In a related example, the same Committee doled out a series of special honorary lectures largely to members or close associates of the Committee itself.

Over the last few years, more and more of the large and small scientific conferences on AIDS have come to be controlled by this same small group of people. Such a trend is not in the best interests of science or the patient community. There is plenty of room for small private conferences that encourage intense scientific discourse. There is also room for large, inclusive conferences. But there should be no room for a major national conference in which a narrow faction of the scientific community overly influences both the program and the makeup of the audience. Project Inform urges that responsibility for managing this important conference be transferred to an independent party, such as the National Institutes of Health or the Institute of Medicine, where at least it will be subject to broad-based oversight and public supervision.

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Project Inform, established in 1985 as a national, non profit, community-based HIV/AIDS treatment information and advocacy organization, serves HIV-infected individuals, their care-givers, and their healthcare and service providers through its national, toll-free treatment hotline, the PI Perspective and other information publications, educational Town Meetings, on-line services and research and drug access advocacy programs. All information is available free of charge; donations are strongly encouraged. For more information, contact the Project Inform National HIV/AIDS Treatment Hotline. Email: web@projinf.org; Website: http://www.projinf.org.

The original of this article can be found at http://www.projinf.org/pub/21/Conference.html