AIDSWEEKLY Plus, Monday, 10 February 1997
Daniel J. DeNoon, Senior Editor
Responding to the concerns of the HIV community, as well as scientists, physicians, and other professionals engaged in AIDS research, major AIDS organizations, including AIDS Action Council, AIDS Project Los Angeles, AIDS Research Alliance, Gay Men's Health Crisis, Linda Grinberg Foundation, Project Inform, San Francisco AIDS Foundation, and Treatment & Data Committee, announced a campaign to persuade organizers of the Fourth Conference on Retroviruses and Opportunistic Infections to radically rethink the design of the conference and move the meeting to a larger venue in 1998.
The Fourth Conference on Retroviruses and Opportunistic Infections, January 22-26, 1997, at the Sheraton Washington Hotel, was a collaboration between the Infectious Diseases Society of America (IDSA), the U.S. National Institutes of Health (NIH), and the U.S. Centers for Disease Control and Prevention (CDC).
In the last three years, it has become de facto the single most important annual AIDS research conference in the world.
According to Donald Armstrong of New York City's Memorial Sloan-Kettering Cancer Center and past president of IDSA, "The IDSA manages the retrovirus meeting for the Retrovirus Conference and Melissa Sordyl handles all administrative matters."
Thousands of scientists, press, and other qualified individuals were locked out of the 1997 conference, as were hundreds of HIV community representatives, treatment advocates, and people with HIV, due to the organizers' policy to severely restrict attendance to 2,100.
The attendance restrictions, with many qualified individuals unable to attend, are unprecedented in the history of medical conferences and have created an uproar in the AIDS research community.
"It is my understanding that one of the original goals of the sponsors was to create a National AIDS Conference," said R. Scott Hitt, M.D., Presidential Advisory Council on HIV and AIDS and member of the Board of Directors of the AIDS Project Los Angeles. "Now that they've succeeded, it behooves them to include all scientists and other qualified individuals engaged in AIDS research. To plan otherwise divides the AIDS research community, discourages younger AIDS researchers, and does a tremendous disservice to the nation and the national AIDS effort."
"Things are changing so fast in the field of HIV/AIDS that it's nearly impossible for clinicians, researchers, and patient advocates to keep up," said Dr. Roy Gulick, New York University and NYU/Bellevue Medical Center. "The Retrovirus meeting provides cutting-edge information that is essential for continuing our fight against HIV/AIDS. Without direct access to the latest advances, we all suffer."
"Claims by the organizers that restrictions placed on the size of this conference are necessary to keep the meeting 'intimate' and 'productive' hide a larger truth," said Martin Delaney, Project Inform. "One of the real motives of the conference organizers is their own desire to keep control of the meeting in the hands of a few, self-selected individuals whose views and preferences dominate every aspect of the program. Opening the meeting will not only make it more equitable, it will improve the quality and quantity of scientific discourse."
"The present situation is absurd when even invited speakers and presenters are denied access and cannot obtain advance registration," said Dr. Steven Miles, University of California at Los Angeles (UCLA). "Moreover, seeking to engender an atmosphere in which publicly funded research is only presented in private forums sets a dangerous precedent. There needs to be free, widespread public access to the information. To think that by restricting reporting by the press and access to the information by the affected communities will somehow enhance the nature of the meeting or the quality of the information to be disseminated is ridiculous."
The conference was held in collaboration with the NIH and CDC. The Retrovirus Conference has become the most important forum for government scientists at the CDC and the NIH, including the U.S. National Cancer Institute (NCI), and the U.S. National Institute of Allergies and Infectious Diseases (NIAID), to present the results of the nation's multi-billion dollar AIDS research program to the greater AIDS research community.
The involvement of the NIH and CDC, by association with these government agencies, has enabled the conference to grow and become the most important occasion of the year for other scientists working in academic institutions who are also recipients of federal AIDS research grants to share the results of their work with other researchers, as well as with the pharmaceutical industry, physicians, HIV treatment advocates, the media, and the public.
RECOMMENDATIONS MADE TO CONFERENCE ORGANIZERS:
AIDS organizations recommended prior to the conference that the organizers of the meeting take the following steps:
* Provide a live video feed into adjoining conference rooms or other off-site facility to accommodate an additional 1,000 to 1,500 scientists, physicians, HIV treatment advocates, and any other participants who wish to attend.
* In 1998, move the conference into a larger facility that can readily accommodate the 5,000 to 6,000 scientists and other experts engaged in AIDS research who need to attend, while also providing for expanded HIV community representation.
* Adopt a resolution declaring that future conferences should be open to all qualified AIDS researchers, including scientists and clinicians in the pharmaceutical industry, as well as physicians in clinical practice, HIV patient advocates, and other qualified experts in the HIV community.
"The organizers have known about the increased demand among scientists and others who need to attend this conference for over a year," said Hitt. "They cannot again in 1998 continue to unfairly restrict access to the meeting thereby limiting the flow of information to scientists, the HIV community, and the nation. They must recognize this new reality and work with scientists and others in the AIDS research community to open up the conference by moving it next year to a larger facility."
DETAILS OF THE CAMPAIGN:
As the first step in their campaign, AIDS organizations announced that they will call upon the leaders of the NIH and CDC, as well as members of Congress, to urgently review the collaboration of the NIH and CDC in future Retrovirus conferences.
They also announced that they will urge the Secretary for Health and Human Services, as well as legislators who serve on committees with responsibility for NIH funding, to reaffirm and enforce government policy guidelines that require the results of publicly-funded biomedical research to be disseminated to the widest possible audience, and not limited to scientific forums attended by a privileged few.
If recommendations made by AIDS organizations and scientists go unheeded, they will call upon the NIH and government leaders to support an initiative for a new national AIDS conference in 1998 that would be more inclusive of scientists and all other individuals engaged in AIDS research. According to reports, the directors of NIAID have directed a similar call to the organizers of the conference.
"Unfortunately, too few scientists have dared to speak up and take a stand on this issue," said Dr. George Fareed, Clinical Research for AIDS Research Alliance. "Once a conference has become the premier annual scientific meeting for AIDS researchers - in effect, the National AIDS Conference - it becomes unconscionable to exclude qualified scientists from attending. To move AIDS research forward, the organizers must open up the meeting to all qualified applicants. There should be no privileged club or hierarchy among scientists."
"People with HIV will win the right to attend this conference and bring the vital information offered there back to our communities so that we remain educated in all the latest research developments and active in all the processes that will flow from this meeting and which will affect our lives," said Gary Rose, AIDS Action Council. "In the fight against AIDS, knowledge is one of our nation's most precious resources. The ability to share it should not be rationed." - by Daniel J. DeNoon, Senior Editor
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