About AIDS TREATMENT NEWS: Past, Present, and Future

This new-year issue provides an occasion to answer the frequent questions about AIDS TREATMENT NEWS. How do we get our information? How do we decide what treatments to cover? Where does the money come from?
How did the newsletter begin? Who is involved?

History

AIDS TREATMENT NEWS began in May 1986 as a biweekly column in the San Francisco Sentinel, a gay newspaper. The column appeared there for over two years; starting this month it moved to a monthly San Francisco newspaper, Coming Up. (The newsletter will remain biweekly of course.)
This writer was first involved with AIDS in 1985, and went "shopping" for an organization which could use research and writing skills. Mobilization Against AIDS suggested the Documentation of AIDS Issues and Research Foundation (DAIR) in San Francisco. DAIR most wanted articles on experimental treatments, and suggested about a dozen for us to research. The first article that came together successfully happened to be about AL 721, and it was published in DAIR's newsletter in April 1986; the same article is also issue #1 of AIDS TREATMENT NEWS. (DAIR still publishes its newsletter, DAIR Update, and it also maintains an AIDS archive open to the public. For more information, call DAIR at 415/552-1665.)
Several months later there was so much demand for back issues that we started the newsletter. The first issue was in January 1987, but we republished the earlier columns as back issues.
This writer had no medical training, but had worked several years doing statistical computer programming for medical research projects, and also had some journalistic experience. (He is known in the computer field for a series of articles on then-little-known computer language called Forth, and also for developing a computer-communication program called The Conference Tree.)
How was AIDS TREATMENT NEWS financed? In 1986 there was no prospect of funding for this work, because of our lack of credentials, and because of the disinterest and hostility toward treatments in the AIDS service community. "Beautiful death" ideas were strong in San Francisco, and treatment information was regarded as quackery, false hope which interfered with the process of accepting death. We realized that the newsletter would have to be self-financed, so we set a regular price in the low-to-middle range of professional newsletters, and a much lower PWA price; the latter was computed to cover the incremental cost of sending each issue (including labor), allowing circulation to expand indefinitely even at the low rate. Meanwhile the professional-rate subscriptions pay for research and overhead. We spent $10,000 starting AIDS TREATMENT NEWS, not counting donation of our own time, but it could have been done for much less; for example, we were so concerned to get the material out that we did not send bills for eighteen months, but kept sending issues whether subscribers paid or not. Exposure in the Sentinel was crucial, however, as AIDS TREATMENT NEWS has seldom advertised; it is hard to establish its credibility except by word of mouth, and the issues themselves are the most effective advertisements.
AIDS TREATMENT NEWS is organized as a sole proprietorship -- which any business is if it does not file papers to become something else. Recently we considered incorporating as a nonprofit, but the disadvantages outweighed the benefits. As a nonprofit we would in fact have become an organization specializing in raising money from corporations and foundations. Funding organizations have handled AIDS poorly, first ignoring it entirely and now flocking from theme to theme as each new idea gets its moments in the sun. We have succeeded in large part because we have answered only to our subscribers, avoiding the pressures which have shaped almost everything else in AIDS.

Operation Today

At this time the paid circulation is over 5,000. About two thirds have paid the PWA rate, but we do not have exact figures, because for additional confidentiality protection we put no indication into our database of what rate subscribers chose. This policy causes bills to always have both the PWA and professional-rate options, no matter what the subscriber paid before. Of course we never give out the list, but we took this precaution so that in case a copy were stolen, it would have no information about the health status of subscribers.
Who works at AIDS TREATMENT NEWS? Four people (including the publisher) work full time , one is part time, and several work occasionally. Besides the publisher, the regular-hours staff consists of:
* Denny Smith -- treatment information;
* Thom Fontaine -- subscription services;
* Tim Wilson -- office operations and marketing; and
* Debra Kelly -- administrative support and special projects.
Where do we get our information? Some people think that AIDS TREATMENT NEWS must have inside connections, but in fact we have surprisingly little access to non-public information. We are press, and officials seldom tell us anything they are not telling the rest of the press.
Instead, we spend much time on the phone, and we usually first hear of a new treatment during a conversation about something else. Then we use online databases for background information, so that we can interview experts
intelligently; without access to computerized databases this newsletter would have been impossible. Then we talk with physicians, patients, scientists, or anyone else with first- hand experience with the treatment, and write the article based on these conversations.
How do we decide what to publish? There is no simple answer. We try to avoid imposing medical ideas or biases of our own. Instead we look at the quality and credibility of information available. What has been published about a proposed treatment, and by whom? What are the reputations of the people behind it? What are their vested interests? What human experience is available? Has data been collected and assembled properly, and fully reported? Is there any independent confirmation? And if the information is correct, would it be useful to our readers?

The Future

We feel that it is our duty to continue to provide the kind of reporting our readers have come to expect.
Our main focus is treatment information. But we believe that community organizing and public-policy awareness are also essential for saving lives. For the treatments now available cannot guarantee survival, even for those who can pay for anything. Individual action alone is not enough; only community action can assure that research and access are not obstructed by red tape, mindless rules, and indifference.
AIDS TREATMENT NEWS has focused on covering the most promising treatments rather than debunking others. There are several reasons for this practice:
* Readers want to hear about what is promising, not what isn't.
* For every treatment we do cover, there are ten others we would cover if only we had time. It takes as long to investigate a bad treatment as a good one, so we choose to focus on the latter.
* A debunking publication must spend considerable effort on legal preparation or defense. We could do so, but we would have to become a different kind of organization.
* We want to keep information channels open; therefore we want people to be able to approach us without fear of being trashed, no matter how unconventional their ideas may be.
* We want to avoid the easy mistake of rejecting unfamiliar ideas prematurely.
On the other hand, times have changed. Two years ago so little was happening in AIDS treatment development that anything that moved was welcome. Now much is happening, so there is more concern that shallow but heavily promoted ideas can divert community attention and waste energy which is critically needed to address the real treatment issues.
On these and other matters, we want to hear from our readers. While we cannot answer all our mail, we always read it and consider it with respect.