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. 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. 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.