Hundreds Turned Away from National Retroviruses Conference in January

Many scientists, physicians, and people with AIDS will be unable to attend the "4th Conference on Retroviruses and Opportunistic Infections" in Washington on January 22-26 -- widely regarded as the most important AIDS research meeting in the world during 1997 -- due to lack of space at the meeting site, the Sheraton Washington Hotel. We have learned from conference staff and others that:

* About 500 scientists and physicians who tried to register are now on a waiting list, and are unlikely to be able to attend the conference. Many more applied but there is no count, as the additional applications were returned since they would have had no chance to get in through the waiting list. General registration for scientists and physicians opened November 20, and after two to three days both the conference and the waiting list were filled.

* An additional 130 people with HIV were turned down, when 150 applied for only 20 "scholarship" slots. Most of the 130 cannot go even if they pay their own way. They will be sent the abstracts book of the conference.

* "Financial analysts and venture capitalists" were told they could not register at all.

* Many others did not apply because they were told the conference was full.

* Some who would certainly have been accepted are out because of some glitch in the application process; when the problem was discovered, it was too late to fix it because the meeting was full.

There are widespread concerns that limiting this conference will affect HIV medical care in the coming year, as physicians are unable to discuss the latest findings with the researchers. Also, excluding business analysts may discourage investment in AIDS research, since the analysts cannot see how researchers' work is received by peers.

Unprecedented restrictions on reporting from this meeting are compounding the problems of getting information to the public. Video and still photography are prohibited -- although photographing slides and posters is important to assure that technical reporting is accurate. Industry-sponsored expert panels, which often report to the public on new findings presented at AIDS conferences, have been strongly discouraged at this one.

Audio taping is allowed, and tapes of some sessions will be for sale, but audio alone is not enough for slide presentations. As far as we know, no videotape sales nor video feed has been planned. Abstracts of the presentations will be available in print before the meeting, and on the Internet after January 22, at http://www.idsociety.org; however, all but the "late breaker" abstracts are written months in advance and not updated for publication. Video from some of the sessions may be made available on the Internet; we do not know whether it will be possible to read the slides.

It has long been clear that there would not be room for everyone who wanted to attend this conference. But the shortage became worse than expected, due to the increasing professional and public interest as a result of the good news on HIV treatment during 1996. With David Ho, M.D., on the cover of the current TIME magazine as Man of the Year (special issue, December 30 and January 6), there will be even more mainstream media interest, since Dr. Ho is giving the opening talk at the conference, "Can HIV Be Eradicated from an Infected Person?" on January 22 at 6:00 p.m. But there is little space for additional reporters, and it would be difficult to find overflow space in the Washington area due to the Presidential inauguration that week. Some fear that the press, attracted to the event but excluded from the information, could spin a dangerously misleading "end of AIDS" story. [Note: Some "mainstream press" reporters can still register, but no later than January 12, and only while slots remain. There will be no onsite registration for anybody. The conference reserved 70 slots for "mainstream press" and 50 for "community press"; all registration categories but mainstream press have now been filled.]

The major reason for the lack of space has been the desire for a small meeting to facilitate scientific exchange, and for a meeting which could be held in a single hotel. Apparently no hotel in the Washington area is large enough for all who want to go. The Retroviruses conference has always been held in Washington, so that government scientists can attend despite lack of funding for travel and accommodations.

Organizational responsibility for the policies and decisions of this conference is unclear. The 4th Conference on Retroviruses and Opportunistic Infections "is an independent conference being held in collaboration with the Infectious Diseases Society of America, the National Institutes of Health, and the Centers for Disease Control and Prevention." There is a Scientific Program Committee of more than 20 leading scientists, but most of them have little or no involvement with meeting arrangements.

According to conference staff, the meeting is funded by registration fees, without government support. Much of the research presented is publicly funded, however.

The Case for a Limited Meeting

Meeting organizers told us they have heard from many basic research scientists that if the meeting is large and open to everyone -- like the International Conference on AIDS, or ICAAC (Interscience Conference on Antimicrobial Agents and Chemotherapy), or the recent AIDS conference in Birmingham, UK -- they will either not attend, or will fly in, give their talks, and fly out. Basic scientists are interested in learning about research opportunities, not in listening to everybody's speeches. And a major purpose of this meeting is to get basic and clinical researchers talking and working together -- certainly one of the most important needs in AIDS research.

Also, basic researchers are less accustomed to industry promotion than clinicians or activists -- and are strongly offended by distortions of the scientific process due to financial pressures.

The conference organizers tell us they have heard repeatedly from scientists attending, both personally and through an annual survey, that they want the meeting kept small "to allow for meaningful scientific interchange (by limiting registration to those actively working in the field)," want to meet in a hotel instead of a convention center, and want the event to remain noncommercial.

AIDS TREATMENT NEWS has not heard any complaints about an open meeting, except from organizers of the Retroviruses conference. But then researchers who feel that way might not seek us out.

History

Last years' Retroviruses conference, held in the same hotel, also restricted attendance and turned away many people, although apparently far fewer than were excluded this year.

The current conflict began years ago. At the Sixth International Conference on AIDS, June 1990 in San Francisco, there were major demonstrations against the U.S. law excluding persons with HIV from entering the country. Researchers and people with AIDS formed an historic alliance on that issue, and often protested together. But another result was fatigue among some researchers, which contributed to the 1990 decision to cancel the International Conference in odd-numbered years (focusing on national or regional meetings in those years) -- and led also to a yearning for a pure-science conference, from which political and social-issue distractions would be absent.

The Retroviruses conference started in December 1993, partly to replace the International Conference in years it did not occur, and also as a forum for U.S. government researchers to present their findings, as obtaining government funding for international travel for AIDS meetings became increasingly difficult. Since then, the Retroviruses meeting has, in fact although not in name, become the U.S. national AIDS research conference. It has also been seen as the meeting for those who want science only, without social issues, business, media, etc., competing for attention.

Organizers of the 4th Conference on Retroviruses and Opportunistic Infections now believe that they must make an unfortunate choice, between sacrificing scientific exchange, or limiting the meeting and keeping out many people who want to go.

The Real Problem: Two Meetings in One

The central problem now is that the Retroviruses conference has become two different meetings in one -- with two constituencies which have different needs.

It was started as a specialized research meeting to bring together clinical and laboratory scientists. That kind of meeting usually works best if it is small and focused.

But the Retroviruses conference has also become the major source of clinically relevant AIDS treatment research information, at least in those years without an International Conference. For example, the latest results on most or all of the trials of antiretroviral combinations, with protease inhibitors and other drugs, will be presented there. This is information that physicians and patients need -- and much of it will not be available anywhere else for months. Business and financial specialists also need to be at this meeting to understand future directions in AIDS research.

There is already a successful model for how to separate these two sets of needs. Before each International Conference, there is a small, highly technical meeting on HIV resistance. It is not open to all, but we have never heard protests about that -- because the information there is too specialized for most activists, physicians, or business people, because those who do need the information can be invited, and because those who need the more practical research information can come to the large meeting, where the information from the resistance conference is also readily available.

If a limited research meeting is truly needed, it should be held just before the Retroviruses conference, so that invited researchers can attend both with one trip. Then the Retroviruses meeting could be opened to everyone who wants to go.

What Is Needed Now?

The conflict around this conference raises the issue of how to run a scientific meeting well.

The basic model of many large meetings is that research superstars fly around the world giving their speech, often much the same speech as at the last meeting. Hundreds of people, sometimes thousands, file into these presentations, sit in rows, and file out, usually without talking to anyone. There may be a few questions, but there is seldom discussion. It is well known that the chance meetings in the halls are likely to be at least as valuable as the formal presentations announced in the conference program.

For many people these lectures are valuable. Physicians, activists, and reporters tend to be generalists; it is important for us to have some familiarity with a number of areas. Laboratory scientists are often specialists; they need to talk to particular people who are relevant to their work, and are less likely to benefit from large lectures.

We believe that most of the material now delivered in large, impersonal lectures should move to multimedia and the Internet; slide presentations could be ideally conveyed this way. The time and expense of flying thousands of participants around the world for lectures would be eliminated; persons could learn at their convenience; and they could scroll or search ahead in a talk, instead of sitting through the entire presentation. Experts could build "threads" through their own and others' talks, in order to teach important new concepts most effectively. (See "AIDS Conference Information on the Internet -- How to Present It," in this issue.)

There would also be online discussion areas, both open and closed, in which anyone (or certain qualified or invited persons) could discuss the material. This way people can find others who share their interests.

Physical meetings would still occur, but they could be smaller and more focused. They could either be open or restricted, as the organizers wished. There would be little need to restrict meetings, and also little objection to doing so, since they would be highly specialized, and practical AIDS knowledge would be readily available online.

The problem with restricting the Retroviruses meeting is that in the system of communication we have today, many people need to be at that meeting in order to understand what is happening in AIDS research. The next large, general research forum which might deal with the whole range of AIDS research and treatment is ICAAC in late September. The exclusion of many hundreds of people from the Retroviruses meeting is therefore a serious problem.

The major research meeting of the year should at least negotiate before excluding many people who are affected by the epidemic. The Retroviruses conference used a small space to justify exclusion. It would have been unthinkable to arbitrarily limit the number of persons with HIV who wanted to attend for personal information or to inform their communities -- unless each one of them who is admitted means that a researcher or physician cannot get in. A shortage of space makes it defensible to shape the character of a meeting by keeping out whomever one wants to keep out. Obviously we need a better way to organize major AIDS conferences.

Although little has been said publicly, there is much anger behind the scenes, as researchers, physicians, business people, reporters, and persons with HIV find themselves barred from a conference where essential information will be presented. There is concern about long-term damage to working relationships, and also to the morale of professionals and others who have consistently worked hard, but could not get into the central meeting in their field.

We see the following as most important now:

* The conflict around this meeting must not disrupt the event in any way, lest critical information be withheld from the public for months or longer. Most researchers will not release new data through newsletters or the Internet, for example, because medical and scientific journals may then refuse to publish the work, and the researchers would lose their chance for peer-reviewed recognition.

* It would be impossible to expand the meeting now to accommodate any substantial fraction of those turned away. But conference organizers still have time to provide videotapes or video feed for those who cannot attend -- or at least to allow people to bring their own cameras. They hope that providing video on the Internet will relieve some of the pressure.

* Media coverage could be improved by organizing press conferences where reporters could question certain presenters. Last year there were such press conferences, but too few of them, and they were open only to reporters who had been able to register for the entire Retroviruses meeting. This year there will be more press conferences.

* Future Retroviruses conferences need a governing structure which allows discussion and negotiation among the different constituencies affected, especially researchers and physicians (including those not allowed to attend this year), interested business and financial specialists, the press, and persons with HIV. A decision to bar hundreds of people from the most important AIDS research meeting of the year should not be made privately by a handful of organizers who need not answer to anyone.

[Note: A consensus letter addressing these concerns is being developed. For more information, contact the Linda Grinberg Foundation, fax 310/471-4565, or phone 310/471-4108; ask for the Retroviruses conference letter, and leave your fax number or mailing address.]