AIDS Treatment News
by John S. James
The 4th Conference on Retroviruses and Opportunistic
Infections, generally considered the most important
scientific meeting on AIDS in the United States, is mailing
its call for Abstracts and preliminary program in mid--September,
and has extended the abstract deadline until
October 16. The tight schedule means that researchers will
have to move quickly to get their abstracts in. You can help
by making sure that researchers you know are aware of the
dates and the deadlines; they may not have been on the
conference's mailing list, or have moved or otherwise missed
the program mailing. (Unlike the International Conference on
AIDS, this meeting is strictly science oriented, and is
unlikely to accept reports of community projects, unless they
have a major research focus.)|
There is also a Late Breaker abstract deadline December 20, only for abstracts "containing novel, cutting-edge information," and only for the late-breaker session, which is Sunday January 26. (It is usually much harder to get an abstract accepted for the Late Breakers than for the regular program.)
Registration and housing for this Washington, D.C. conference does not open until October 28, and then only for accepted abstract authors; registration and housing opens for other researchers and clinicians on November 20. We do not know the admission price, but it is usually fairly high for the Retroviruses conference, since it does not sell industrial booth space to defray costs. Registration is scheduled to *close* for everyone on December 20 even if the attendance limit of 2100 registrants has not been reached, or earlier if it has. There will be no on-site registration. Nothing has been announced yet about press registration. An attempt will be made to raise funds to help some persons with AIDS attend. (There were no such scholarships last year, despite indications money was available, as the management of the scholarship project did not happen in time.)
The conference will open on the evening of Wednesday January 22, with the Bernard S. Fields Memorial Lecture, "Can HIV Be Eradicated from an Infected Person?" by David Ho, M.D. -- and a plenary lecture, "Status of the Disease in the World," by Peter Piot, M.D.
The preliminary program lists the following State of the Art lectures:
Viral and Cellular Dynamics: Implications for Antiretroviral Therapy
Afternoon symposia include: HIV entry cofactors; PCP; KS; non-KS malignancies; advances in prevention; mycobacteria; primary and early infection; vaccines; cryptosporidium; determinants of disease progression; protease inhibitors; accessory and regulatory genes; and an update on antiretroviral therapy.
There will also be slide sessions and poster sessions. The topics for these will depend on the abstracts submitted.
For a copy of the Call for Abstracts & Preliminary Program, or for other information, call the Retrovirus Conference Hotline at 703/299-0412.
In 1990, after major demonstrations at the International Conference on AIDS in San Francisco (due to Congress overruling all professional advice and excluding persons with HIV from the U.S.), the decision was made to hold the International Conference only once every two years, and in the other years to focus on regional AIDS meetings. (Because of the four-year timeline for planning the international conferences, four of them were already in the pipeline, so 1995 was the first year without an international conference, under the policy adopted in 1990.) The Retroviruses conference, officially "an independent meeting held in collaboration with the Infectious Diseases Society of America, the National Institutes of Health, and the Centers for Disease Control and Prevention, " has in effect become the U.S./North America conference under the plan of shifting to regional meetings.
It is also becoming the most restrictive major AIDS conference in history -- hostile alike to industry and the press (see "Press Gag Rules at AIDS Conference, "AIDS TREATMENT NEWS #241, February 16, 1996). The recent Advance Program even states that marketing personnel and financial analysts will not be able to register. For press at least, photography and tape recording are likely to be banned in all sessions, although this has not been finally determined. (The traditional policy is no *flash* photography in oral sessions -- sometimes modified to allow flash photography in the first five minutes of a high-profile talk, to allow reporters to take their pictures of the speakers.) Closing all registration a month early is likely to greatly reduce mainstream press coverage, as media interest usually grows substantially just before a major AIDS conference, not a month or more in advance.
Press reporting restrictions at AIDS conferences have become a problem only within the last year, and only at two meetings: the Retroviruses conference, and to a lesser extent ICAAC. Rules against photographing posters (with guards patrolling constantly for enforcement) and the possible banning of audio and video taping of oral sessions, greatly reduce the flow of information from the conference to those unable to attend. For our reporting, we strongly prefer to contact researchers after the meeting; but when there are hundreds of relevant presentations, it is impossible to interview everyone. Many talks and posters are not covered at all due to reporters' reluctance to rely on memory and written notes alone for critical technical information.
The ostensible reason for these rules is that researchers are afraid their data may be stolen by competitors. An additional reason may be anxiety at having one's work photographed or recorded by strangers for unknown purposes. And while the 1990 San Francisco conference led to an historic alliance between researchers and community activists -- at least one book has been published on the subject -- it also led some researchers to want a science-only meeting, without the social issues. The Retroviruses conference seems to have addressed this understandable desire, unfortunately resulting in a tradition of ivory-tower distance from other segments of society which are interested in AIDS.
Another key problem of the Retroviruses conference is the decision to limit attendance -- apparently so that this meeting, which always occurs in Washington in January or February, can be contained in a single hotel. Limiting total attendance serves to keep non-scientists out, since if researchers for whom the conference is designed are turned away due to lack of space, there will be a rationale to limit the number of slots for press, company representatives, or people with AIDS. This year, the late announcement and tight scheduling deadlines are also likely to exclude researchers who otherwise would be presenting.
AIDS Treatment News has long opposed excessive industry influence on AIDS research agendas; industry has a permanent bias toward proprietary, expensive, treatments, and against inexpensive ones. But the right way to broaden the research agenda is to organize countervailing power elsewhere -- among patients, professional organizations, the public/media/politicians, and even managed-care organizations (which share an interest in less expensive treatment) -- not to restrict attendance by industry and financial people at scientific conferences. Not only do they have valid business there, but in the real world scientists themselves attend in part to develop contacts for future funding of their work.
There may be just one "slot " for a de facto U.S. national AIDS conference -- and little chance of persuading this one to respond better to the needs of diverse publics. It would be harmful to disrupt a scientific meeting to attempt to force more openness. The concern now is that this conference may disrupt itself through excessive control.
The most practical alternative may be to encourage greater use of the Internet for leading-edge research communication -- not to try to replace face-to-face meetings, but to make all communication, including such meetings, more effective. In addition, we need to continue to challenge the management of any major AIDS conference that imposes excessive or unworkable restrictions, so that barriers to information will not become accepted and widespread by default.
An expanded-access program for nelfinavir, an experimental
protease inhibitor being developed by Agouron
Pharmaceuticals, Inc., began enrolling patients on September
16. To qualify, persons must be HIV positive, at least 13
years old, with CD4 count less than or equal to 50
(determined in the last 90 days), have not use nelfinavir
previously, and must be unable to use any of the three
approved protease inhibitors (either because of intolerance,
drug failure, or their physicians' judgment that the drug is
For more information, call 800/621-7111, Monday through Friday 8:00 a.m. to 6:00 p.m. Eastern time.
ICAAC Conference AIDS Overview
AIDS-related information presented at the Interscience
Conference on Antimicrobial Agents and Chemotherapy (ICAAC),
New Orleans September 15 through 18, was summarized for the
general public in an hour-long conference call from New
Orleans, organized by BETA (Bulletin of Experimental
Treatments for AIDS), the treatment newsletter published by
the San Francisco AIDS Foundation. Researchers Roy Gulick,
M.D. and Michael Saag, M.D. described presentations at the
meetings, and answered called-in questions. This conference
call was supported by an educational grant from Hoffmann-La
Some of the topics examined in the September 16 call:
Washington AIDS Events:
Many events are scheduled in Washington D.C. around the time
of the display of the full AIDS Memorial Quilt, the largest
AIDS awareness event in history. AIDS Treatment News listed
treatment-related events in the October 1996 calendar in
The following are expected to be the largest demonstrations at that time:
by John S. James
Whether you are employed or unemployed, insured or uninsured,
anyone who may need major medical care must know in advance
what to do or not to do in order to avoid losing rights and
benefits, and to preserve medical options.|
Since 1987 AIDS Benefits Counselors (ABC) has advised San Francisco residents on health insurance, disability, and other benefits programs, both private and public; it serves over 2,000 clients a year. AIDS Treatment News asked Daniel Fortuño, employee benefits counselor and coordinator for volunteers and training at ABC, to outline some of the areas which are most critical for people to know to prevent serious, costly mistakes.
The interview below focuses on California; some of the information will not apply in other states. And because it is based on practical experience in advising clients, it cannot address new Federal laws -- both for good and for ill -- that have been signed but not yet taken effect.
An article cannot provide advice you may need in your particular situation. Instead, we hope to provide a heads-up so that you can get personal advice elsewhere.
Because of the length of the interview below, we divided it into two parts, and plan to publish part II in our next issue.
Background and Glossary
Insurance and benefits information is complex. The interview below necessarily jumps between various private, California, and Federal systems, since different programs need to be coordinated to meet an individual's needs. This section on basic concepts and historical context will help readers understand the interview.
Interview with Daniel Fortuño