Major AIDS Organizations Launch Campaign To Expand National Retrovirus Conference
January 22, 1997
Contact: Joe Zuñiga, AIDS Action
The 4th Conference on Retroviruses and Opportunistic Infections (January 22-26, at the Sheraton Washington Hotel), is an independent meeting held in collaboration with the Infectious Diseases Society of America, the National Institutes of Health (NIH), and the 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.
Unfortunately, about 3,000 leading scientists and other qualified individuals have been locked out of this year's conference, as have hundreds of HIV community representatives, treatment advocates, and people with HIV, due to the organizers' policy to severely restrict attendance to 2,100. According to the latest information, over 5,000 applied to attend the conference, meaning that just under 3,000 were unable to get in. Most of these are qualified AIDS researchers and clinicians.
Many independent AIDS experts and representatives from the organizations listed above believe this short-sighted policy can only undermine the national AIDS effort. Rapid access to all the latest scientific information is crucial so as not to impede the progress of scientists working on a solution to the AIDS crisis, nor limit the ability of clinical researchers to speed discoveries from the laboratory via clinical trials into clinical practice.
The current attendance restrictions, with so 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., Chair of the Presidential Advisory Council on HIV and AIDS. "Now that they've succeeded, it behooves them to be inclusive of 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, an AIDS expert at New York University who works in the front lines at 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, founder of 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, a leading AIDS researcher and Professor of Medicine at 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."
Even more disturbing, in light of the restrictive attendance policy, is the fact that the conference is being held in collaboration with the NIH and CDC. In fact, as the organizers acknowledge, the Retrovirus conference has become the most important forum for government scientists at the CDC and the NIH, including the National Cancer Institute, and the 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 universities and other 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.
Having created a National AIDS conference that has become so vital to the interests of so many scientists and other HIV experts, and in view of the continuing national health crisis that is AIDS, the above AIDS organizations, with the support of other organizations listed below, believe that the organizers must recognize the increased demand and move the conference next year to a much larger facility.
To avert the present difficulties, the above AIDS organizations have jointly recommended prior to the conference that the organizers of the meeting take the following steps:
The organizers have to date refused any discussion or accommodation to these reasonable requests. Ignoring the lessons from last year's conference, the organizers have rebuffed every attempt to open channels of communication and establish a dialogue with interested parties in the AIDS research community.
"The organizers have known about the increased demand among scientists and others who need to attend this conference for over a year," said Dr. R. Scott 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 announced today, the above 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.
The above organizations 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.
Finally, if recommendations made by the above organizations and scientists go unheeded, the above organizations announced that 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 reliable reports, the directors of NIAID have recently 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, Director of 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."
Limiting participation in such an important event by any group of professionals engaged in AIDS research, whether AIDS research scientists, clinical researchers, physicians, representatives of the HIV community, or other qualified individuals, is morally wrong and can only serve to prolong this disease.
"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 of 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."
Other organizations supporting this initiative include: AIDS Treatment News, San Francisco; Critical Path AIDS Project, Philadelphia; The National AIDS Treatment Advocacy Project, New York; And The NYU/Bellevue AIDS Community Advisory Board. A consensus statement and complete list of organizations and individuls who support this initiative is available upon request.
This article was provided by AIDS Action Council.