Press Gag Rules at AIDS Conference

[Although this conference is over, the issues it raised will affect future AIDS research meetings. Especially important is how press restrictions can change the depth of media coverage which AIDS research receives.]

Those who did not attend the 3rd Conference on Retroviruses and Opportunistic Infections, but saw only the media hype, may have visualized reporters crawling over the meeting like ants, packing the press room while they filed the hundreds of stories that were published. Nothing could be further from the truth. The press room was sterile and empty; we have seldom seen fewer reporters at a major AIDS conference (or fewer people with AIDS, either). Look again at the newspaper articles you read, and note the authors, if any. Most of the articles were reprinted from elsewhere, or attributed to unnamed "wire services," meaning that a rookie reporter who never got near the meeting and knew nothing about the subject was assigned to rewrite articles and wire dispatches by others, to avoid the need to pay royalties. The lack of reporters paradoxically contributed to the media feeding frenzy, allowing half-truth and hearsay to soar without reality checks.

The reporters were absent because they were turned away at the door; this conference rigidly imposed advance registration requirements, with press reportedly traveling from as far as Mexico and Europe having to return empty handed. We have no idea how mainstream reporters, especially foreign ones, were expected to learn about these extraordinary requirements, or how to meet them; we were warned by friends and colleagues to apply early. Also, this meeting was not hot until shortly before it started; mainstream reporters had no reason to apply, until after it was too late. Even well-known AIDS publications like AIDS TREATMENT NEWS, CRITICAL PATH AIDS PROJECT, and the JOURNAL OF THE INTERNATIONAL ASSOCIATION OF PHYSICIANS IN AIDS CARE, had great difficulties being allowed to register; we do not know who was turned away. AIDS TREATMENT NEWS was not accepted until less than a week before the meeting, even though we started the application process almost two months earlier, on December 1,
and pursued it meticulousl
y. Our airfare would have cost us almost a thousand dollars extra, if we had not bought tickets in advance of acceptance, planning to cover the meeting by interviewing people in the aisles if necessary. (A list of 21 "community press" organizations got in without trouble.)

In many past conferences, people with AIDS have been quietly allowed to register as press, with an editor's letter or other showing of a press connection; these activists in fact do report on the conference to many others, although they are not full-time journalists. This meeting went to some trouble to discourage such arrangements. Instead, there were supposed to be scholarships open to people with HIV; ten thousand dollars would be raised from the pharmaceutical industry to finance admission for about 50 people. But, for reasons we do not know, it never happened.

In the conference, an extraordinarily sterile press environment meant that to learn what was going on, reporters had to recognize people in the hallways, or be recognized by them -- a serious disadvantage for reporters new to AIDS. Press rooms usually distribute dozens of press releases, from the conference staff, from pharmaceutical companies, and from others; in this entire conference we saw only a single release ever in the press room -- a government release on Dr. Anthony Fauci's keynote address, a talk which practicing physicians found useless. There was also a list of program highlights distributed by the conference staff; sometimes photocopies of NEW YORK TIMES, WASHINGTON POST, and USA TODAY articles; a few faxes and other private messages for reporters laid out on a table; and some computers, which were useful because Merck & Co had computerized the conference abstracts and made them available on disk. Beyond that, there was nothing. The press room had a bulletin board, but
it was empty throughout; w
e never saw a single notice posted on it in the entire five days. Reporters seldom visited the room, and they did not stay. The reason for this lack of communication was rigid press rules forbidding those registering as press from distributing anything to other press or anyone else at the conference, under threat of being kicked out of this and future meetings. (There was a table labeled "newsletters," and thanks to chance meetings in the hotel hallways, we were able to get permission to leave copies of AIDS TREATMENT NEWS there.)

We had no such luck on photographing posters. Our request for permission was denied, although we promised in writing that the pictures would never be published or distributed, only used for our own review to assure the accuracy of our reporting. This rule made it unfeasible for us to visit most of the posters, which were available for only one day while competing meetings were going on; our time could be better used elsewhere. Incidentally, we had never once seen such a rule during our first ten years of covering AIDS meetings -- the first no-picture rule was at the ICAAC conference last fall. Until then the rule had been no *flash* photography during the oral presentations, which makes sense.

(The reason for the no-picture rule is the fear that scientific and medical journals will consider results presented at the conference to be "published," and therefore reject later articles by the researchers which are based on the same data. The organizers of the Retroviruses conference seem to believe that by making it more difficult for press to cover their meeting, they make it less likely that journals will reject work presented there as being previously published. In our ten years of reporting the epidemic, what we have found consistently among almost all high-level researchers is that no matter how much they may want to save lives, publication rules and journal exclusives come first. That is how their successful careers have been built.)

A press conference took place on the first full day of the meeting, and the reporters' main request was for more press conferences so they could question major speakers. The organizers promised more conferences, but they never happened.

There was a Community Liaison Subcommittee of the Scientific Program Committee, the governing body which was ultimately responsible for the rules of the Retroviruses conference. According to former member Mark Harrington, that entire subcommittee "resigned in protest at the conference's mishandling of press and community registration and participation."

Why?

The difficulties at this meeting were not accidental; next year's conference could be as bad or worse. The problems stem from a particular vision and goal of the conference, one which seems to be widely shared on the Scientific Program Committee.

This goal -- which we certainly do support -- is for the conference to bring together basic and clinical researchers, who usually do not talk much to each other. The clinical researchers who largely run the meeting seem to believe that if there is much else going on -- such as activism, or press coverage, or pharmaceutical industry activity -- the basic researchers will leave or not come next year. The organizers want to avoid the big-tent model of the international AIDS conferences since 1990, which some see as circus-like, and focus the Retroviruses conference as a scientific meeting only. That may explain the hostility to activists, and the rules which make it difficult for the press to function, such as forbidding pharmaceutical companies and others from distributing press releases.

Other problems stem from limiting the total size of the meeting, which also required limiting press, and therefore turning away reporters and scientists alike because the meeting was full. The organizers say that no hotel in Washington could hold a larger conference -- they would have to move to the convention center, meaning a less convenient and intimate conference, or use more than one hotel. We counted hundreds of empty seats during the keynote address, however, and floor space for hundreds of seats more, while other large meeting rooms available to the conference were empty.

Bringing together basic and clinical researchers would be extraordinarily important, perhaps the best thing that could happen in AIDS research. But we do not believe that discouraging press, activists, and industry is the key to doing so. Both kinds of researchers were at this conference; but they seemed to be living in different worlds, with little reason to talk to each other. Most of the basic research had no visible relevance to treating patients, perhaps because most basic researchers listen to other scientists, not to physicians who see patients, when they decide what scientific problems they will work on.

The fundamental error, we believe, lies in a currently prevailing definition of science. For background, see an extraordinarily insightful commentary, "The Slowing of Treatment Discovery, 1965-1995," by Richard J. Wurtman and Robert L. Bettiker, published in NATURE MEDICINE, November 1995, pages 1122-1125. This article analyzes why modern science has done so well in advancing fundamental biological knowledge, including knowledge about the human body -- while at the same time it has done so poorly in translating this knowledge into new treatments and cures.

If the Scientific Program Committee of the Retroviruses conference is right about what it takes to get basic researchers to come and talk to clinicians -- a comfortable hotel, and suppression of activism, industry, and the press -- then all the rules are worth it. But if they are wrong, they are doing significant damage for nothing. For this meeting has effectively become the U.S. national AIDS meeting, the most important AIDS research meeting in the country every year, the most important in the world during some years. It serves many purposes and publics, not only the single-minded agenda of bringing basic and clinical researchers together. One purpose it is supposed to serve is the effective dissemination of information to the public.

This year's meeting showed that organizers can exclude much of the press without reducing the quantity of press coverage. What was lost instead was quality. Reporters at the meeting did their jobs, but there were not enough of them to cover the news in depth. For example, the important good news about the Abbott protease inhibitor, which has saved many lives already in a clinical trial, went out to the world without notice of its dangerous drug interactions, an omission which could be life-threatening. And what the news means to Mexico and other countries was not reported, and the information is now lost, because their journalists were turned away while CNN blared out sound bites to the world. The same narrow perspectives were endlessly regurgitated in the media -- so if measured by total column inches, the conference media coverage was a success.

The reason this meeting got press is that leading government-certified experts agreed among themselves that the protease-inhibitor news was important -- and a few major companies, mainly Merck & Co., and Abbott Laboratories, built on that consensus in pursuit of their interests. Indeed the news was good. But the exclusion of much of the press replaced depth of coverage with media hype and manipulation, a disservice to the public.

What Should Be Done?

We have two suggestions:

(1) Bringing basic and clinical researchers together via conferences could be better pursued by small, specialized meetings which focus on specific problems selected with this purpose in mind. An excellent model is the Project Immune Restoration Think Tanks, organized by Project Inform. These meetings are invitation only, and press -- including AIDS TREATMENT NEWS -- is excluded except sometimes for a press conference at the end. We have no problem with that. Our concern is with seriously restricting press coverage of the major national AIDS research meeting of the year.

(2) It would speed medical research substantially to break the tyranny of the professional journals which now demand that new research findings be kept semi-secret for months or even years, just so that leading journals can further aggrandize themselves. The consequences are deadly, because scientific and medical findings are withheld not only from the public, but also from other scientists in different but related fields who are outside of the professional circles of the researchers -- scientists who could otherwise be using the findings to improve their own research. The resulting delays are cumulative, seriously delaying new treatments for AIDS, cancer, and all other diseases, as well as reducing national competitiveness and inflicting long-term economic loss on the country.

We believe that the best way to correct this problem would be to establish top-quality peer review panels which are not connected to journals or other publications. These panels, which could be organized by professional societies, would review papers or other reports of scientific work independently of publication; they would have no incentive to demand exclusivity or secrecy. The approved papers (and pending or rejected papers, as well) could be distributed through the Internet, through journals which do not demand pre-publication secrecy, in compilations, or otherwise; whatever the format or distribution system, readers would know that the approved articles had been through professional peer review, so the work could get the attention it deserved.

This system would allow scientists and scholars to earn professional recognition for their work without having to keep it secret first, greatly improving scientific communication and thereby accelerating discovery. And the final quality of the published articles would be higher than today, because busy reviewers (usually only two of them) cannot check everything; without secrecy, the entire scientific community would be able to comment on the work as it was being reviewed. Studies of today's "peer reviewed" articles have found many errors which the reviewers should have caught. Such problems could be greatly reduced by open public exposure instead of secrecy during the review.

What motive would professional societies have to review scientific papers if they are not going to publish them? The same motive those societies now have to grant professional awards of various sorts, awards which develop their own credibility over the years and reflect well on the organizations which sponsor them. And most researchers are unhappy with the current system -- although they seldom discuss the issue publicly, as their careers depend on the journals.