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The Social Impact of Aids in the United States
of sufficient rigor that they should be singled out for rapid, intensive review and early disclosure of relevant results. It is likely that continued refinements, large and small, will be proposed that will alter the process of research review and dissemination. Because of the large number of AIDS-related clinical studies, including clinical trials, and the urgency of AIDS research, it is likely that much of the debate and change will take place in the context of the epidemic.
The dissemination of AIDS research information through AIDS-specific, nontraditional means has been explosive. Among the most interesting of these are patient-oriented publications, which started out very modestly but have grown in sophistication and influence as well as circulation. AIDS Treatment News (mentioned above), which is produced in San Francisco by John S. James (a former computer programmer), has a circulation of about 5,000. Another influential newsletter is San Francisco Project Inform's PI Perspective. Supported by a staff of 11 and numerous volunteers, it has a circulation of 50,000. Project Inform also operates an AIDS treatment hotline (Bishop, 1991).
Many mainstream AIDS researchers and clinicians are subscribers to AIDS treatment newsletters, and a few even contribute to such publications. Often, these publications provide editorial comment on many aspects of the epidemic, such as regulation and access to drugs, HIV antibody testing among various groups at risk, and immigration and travel restrictions for HIV-positive individuals. Completion and updating of information regarding all known AIDS drugs has been done for several years by the American Foundation for AIDS Research through its AIDS/HIV Treatment Directory. The Public Health Service operates a toll-free hotline (1-800 TRIALS-A) that provides information on federally sponsored clinical trials and industry-sponsored efficacy trials.
From the beginning of the epidemic, the problem of teaching busy practitioners about a new disease of rapidly growing prevalence and importance was appreciated. A variety of newsletters for primary care practitioners were established to meet this need, such as AIDS Alert, AIDS News, and AIDS Clinical Care (published by the Massachusetts Medical Society, publishers of the New England Journal of Medicine). These publications are uniquely suited to providing up-to-date information on AIDS through a mixed format of in-depth clinical reviews, annotated summaries of articles in leading peer-reviewed journals, and reporting of late-breaking stories of interest. They fill a gap between mass media reporting and traditional peer-reviewed journals and as such are uniquely suited to the exigencies of the epidemic.