Retroviruses Conference Excludes People with AIDS, Researchers, Physicians

At least 15 security guards, some flown in from San Francisco, blocked about 15 people with HIV who came to the Sheraton Washington Hotel in Washington, D.C., hoping to replace last-minute no-shows and attend scientific and treatment discussions at the 4th Conference on Retroviruses and Opportunistic Infections (January 22-26). Guards also threatened to expel or arrest persons distributing flyers toConference participants or the press asking that future conferences be open to those with HIV -- or informing activists of a post-conference meeting to discuss a national strategy to address growing problems in expanded-access programs. Conference organizers did provide open video feed(without badge checks) from only one of often five simultaneous sessions, as well as allowing access to the poster hall when posters were available for viewing but not being presented.

Apparently the security was hired to deal with several individuals who often disrupt AIDS meetings in San Francisco, where security at AIDS forums is now routine; the guards knew some of those people by name, and presumably were chosen because they knew their faces and tactics. But none of them showed up in Washington. No one came to disrupt the Retroviruses conference, so the expensive security only stopped people with HIV seeking medical and scientific information. (For background on the San Francisco disruptions, see AIDS TREATMENT NEWS issue # 244, April 5,1996.)

The official waiting list of researchers and physicians who also were denied attendance was approximately 500, but it is clear that many more people wanted to attend but were unable to. Some of the nation's leading AIDS research physicians --as well as the Chair of the Presidential Advisory Council on HIV and AIDS -- were among those who tried to go but could not get in. Some applicants never heard back after they faxed their initial application -- and unless they called withinabout two days of the official opening date and learned that there was no record of their application, and that they had to send the paperwork again, it was usually too late.

One of the many press restrictions was that faxed newsletters reporting from the Conference with pharmaceutical-company support were prohibited. The International Association of Physicians in AIDS Care -- threatened with having its writers and staff banned from future conferences -- in the last week had to cancel its plans for daily reporting to its member physicians, at considerable cost to the organization. This affected many physicians, whose patients ask about treatments that are in the news; without daily medical reports from an ongoing conference, it can be hard to get in-depth information quickly.

The annual Retroviruses conference was started at the request of Federal agencies (the National Institutes of Health, and the Centers for Disease Control and Prevention), and has infact become the U.S. national AIDS conference. As far as we can tell, all decisions regarding arrangements for this year's meeting were made by a four-person Steering Committee (which is within the Scientific Program Committee): Douglas Richman, M.D., chair; Constance Benson, M.D., vice chair; Chip Schooley, M.D., last year's chair; and Melissa Sordyl, M.B.A., executive director of the IDSA (Infectious Diseases Society of America). The rationale for limiting attendance was stated by Dr. Richman as the first words of the Conference:

"Before we start the program, I'd like to make a few remarks about the principles of this meeting. The Program Committee,in the design of this meeting, (wanted) to have a forum put together by basic and clinical investigators for basic and clinical investigators to present and exchange information,and with that objective in mind, the program committee confirmed -- by a very large proportion of the participants over the last three years -- (that they agreed) to keep it a meeting of this size and not expand it... The cost of that has been a (meeting) limited in size, and with some frustration, obviously, to some people, but there's always a trade-off between having a meeting of unlimited size with allof the circus-related activities that we've come to experience with some of the larger meetings, and something of this size..."

The four-person steering committee and others met privately on January 24, and is rumored to be inclined to enlarge the Conference by 1,000 to 1,500 additional people next year, although no official decision has been made.

At least four organizations or coalitions have started, or are considering, legal action to prevent a repeat next year of what happened at this Conference. Federal laws regarding disabilities, and regulations on closed meetings and dissemination of publicly-funded research, are being explored.

Comment: Access to Information

Most activists involved with this Conference find it unbelievable that in 1997 people with HIV are fighting for access to scientific meetings, an issue which otherwise had been resolved years ago. The situation is widely seen as a serious threat to the partnership between persons affected and the research community -- a partnership firmly in place since 1990. AIDS treatment activists have made immense contributions to developing clinical trials that can recruit volunteers and otherwise work in the real world, greatly speeding drug development. They attend scientific meetings not only to get information, but also to raise questions, and to get researchers to interpret data in terms of what it means for people's care. If persons with HIV are not allowed to be full partners in the research effort, they cannot just walk away, because their lives are at risk. If partnership is denied, the relationship will shift from teamwork and support of research funding, to seeking information access through Federal rules, Congress, and the courts.

We believe that activists should avoid a negative focus on this particular meeting, by looking beyond it to the larger problems of medical information dissemination in an epidemic (including the Retroviruses conference). The system is not working. A current example concerns CPCRA 006, a study comparing daily vs. three times a week pneumocystisprophylaxis. This study, the largest controlled trial ever in AIDS, was surprisingly rejected from presentation as a "latebreaker" at the Retroviruses conference. As a result, it was blacked out of all public and most private conversation at the Conference, where experts lectured on pneumocystis and its prophylaxis without mentioning the new information. Because of a U.S. Division of AIDS policy against releasing summaries before peer review, the results of CPCRA 006 might not be published until the ICAAC conference, September 28 -October 1 in Toronto. (Conferences such as ICAAC, or the Retroviruses meeting, are minimally peer reviewed in that presentations, submitted as abstracts, can be rejected. Journal peer review is usually more extensive, because the entire article is submitted and the reviewers can ask for changes, instead of only being able to accept or reject.)

Unfortunately it has become almost routine for information of medical and public-health importance, obtained with public funds, to be kept secret from the public and from most physicians. (Another major example is the International AIDS Society treatment standards, delayed for months before their release on July 10, 1996 when they were already largely obsolete.) This semi-secrecy, ostensibly to keep publication standards high and avoid misleading the public, really serves to increase the sales and prestige of scientific and medical journals by putting them at the center of national publicity when important news breaks; otherwise, there would be little objection to releasing the information during or after review, but before publication of record. Researchers cannot take the lead in correcting these abuses, because they fear retaliation when their own work is considered for publication.

But activists could blow the whistle. It is usually easy to confirm the existence of withheld information, given a detailed tip, even an anonymous one -- and usually dozens of people, sometimes hundreds, know enough to provide the tip. If there were a high-profile organization addressing this problem, anyone who knew about wrongful or questionable withholding of information important for public health would know whom they could write or call, at no risk to themselves.(For an example which already happened, note the recent press leak of the two-thirds drop in AIDS deaths in British Columbia during the last two and a half years; see "1997Outlook," AIDS TREATMENT NEWS #263, January 17, 1997. This information, important worldwide for treatment reimbursement and access to care, could otherwise have languished indefinitely awaiting publication -- although it is hard to see how peer review could much improve a simple report of a two-thirds drop in death rates.)

Another approach would be to investigate whether the current system of "information purgatory" -- major medical and scientific advances produced with public funds but withheld from the public for months -- provides unfair advantages to companies and investors with the right connections, creating a trade in private favors. Does this help to explain why a clearly dysfunctional system has been so resistant to change?

But the first steps should not be confrontational, but rather to work with researchers, physicians, publishers, and others concerned about medical care and effective information dissemination, to devise a system which better serves the public interest. A mechanism of rapid peer review followed by Internet or online-journal publication (to avoid the weeks or months of wait for physical page space) -- and which would count as peer-reviewed "publication" in Medline and elsewhere-- would be a major step forward. Meanwhile, activists can support researchers who want to release their findings more quickly, but are not in a position to advocate for a more rational system.

For More Information

Shortly before the Conference, a coalition of major AIDS organizations, including the 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 and Data Committee,began a campaign to persuade the Conference organizers to move the meeting to a larger location next year. On January 22 they released a five-page press background statement focusing on the issues of physicians and researchers excluded. During the Conference, several press releases from several individuals and organizations addressed the importance of access to persons with HIV; and the Conference organizers replied with their press release. A consensus statement calling for a more open meeting is also being drafted, but is not finished as this issue goes to press.

Also see "Strange Bedfellows Damage CDC and NIH Credibility,"a strongly worded editorial in the February 3 issue of AIDSWEEKLY PLUS, an AIDS newsletter published since 1985,which was denied access to report on the Retroviruses conference.

For an information packet -- or to connect with other people who want to work on these issues -- contact either: GaryRose, AIDS Action Council, 202/986-1300 x3026 or fax 202/986-1345; or the Linda Grinberg Foundation, 310/471-4108 or fax 310/471-4565.

Note: Before publishing this article, we faxed a draft to the Steering Committee, asking for their comments about any facts in dispute, or other changes they might suggest. The Committee replied that "there are several inaccuracies in your story, particularly related to access to information,security, policy decisions related to the Conference, fax newsletters, registration for the Conference, and distribution/publication of new information in late breaker abstracts not accepted for presentation." The reply did not specify which of our statements were considered inaccurate,nor did it suggest any corrections or changes that we could make to meet their approval. We may publish a longer statement from the Steering Committee in the future.