AIDS TREATMENT NEWS 1991: Focus and Plans

The new year provided an occasion to examine our mission and direction, and ask how we would like to change. What issues affect our decisions on what to cover, or not cover, in AIDS TREATMENT NEWS? In this article we step back for a more philosophical overview of how we try to operate.

There have long been public concerns about the lack of AIDS information, and also about being overwhelmed by the glut of it. How can there be both too little information and too much at the same time? We suspect that this paradox is possible because most published information is not useful. Again and again we hear complaints that press stories of the latest treatment advances have no followup, and no way for readers to do anything with the information. These stories have little value except to say that something happened.

We suspect that this problem arises because the press no longer provides the information needed for people to fulfill their ostensible roles as sovereign citizens. The press gets many stories essentially free by opening itself to manipulation by those with something to put over. Some publications do resist this system; the Wall Street Journal, for example, must provide useful reports, because its readers are deemed important, and they use the information in making financial decisions. And many individuals throughout the media bring as much integrity to their jobs as they can get away with. But we think that this analysis -- that a hidden role of the media is to strip the public of its sovereignty, to package the audience for sale to powerful interests -- best explains the irrelevance of most news reports to readers' lives. This problem is hardly unique to AIDS, but it is less noticed in most other areas, where people seldom use public information in making real decisions. The life and death urgency of AIDS treatment decisions exposes the
inadequacy of most of what comes through the usual media channels.

The corrective, then, is to respect the reader as a person making his or her own assessments and decisions. The goal should be to provide quality intelligence which might be useful to that person -- not to predetermine what the decisions should be and then try to bring that outcome about. These goals may seem obvious -- yet most people in the health-information business (or in any business, for that matter) are not allowed to operate this way. A drug company, for example, has an institutional commitment to its own products; its employees are not likely to put forth an analysis which favors the competition.

We believe that our effort to avoid such institutional bias helps to explain the success of AIDS TREATMENT NEWS. Avoiding this bias does not, of course, mean not having a point of view. On the contrary, a point of view is usually essential for making complex information intelligible. How, then, do we distinguish what beliefs are or are not legitimate for guiding our coverage in this newsletter? One distinction is between having a belief but remaining willing to change when new evidence becomes available vs. not being willing to change because of what one has published in the past. Another standard we use is to try to assure that our writing would be useful even to readers with a different or opposite point of view.

Two less obvious, more philosophical dynamics help our efforts to keep the material in AIDS TREATMENT NEWS relevant and useful:

* In business management, there is a saying that results are obtained by applying resources to opportunities, not to problems. We can benefit from this principle because we can select, from the entire range of AIDS treatments, what we want to work on. If a drug is found to be less than promising, or if our research bogs down for any reason, we can move quickly to something else. If, for example, researchers are secretive, we can choose another treatment to write about. (Secrecy and intrigue are often used to enhance the value of something which would not succeed on its own. Most new drugs do begin their life in secret; but at that stage they are not available as treatment options, and therefore not of immediate interest to our readers.)

Almost nobody else involved in AIDS treatments has the journalist's freedom to move at will to where opportunities are best. Scientists at pharmaceutical companies, for example, are constrained to work on their companies' products -- even if it becomes apparent that other treatments are better. University scientists, theoretically free to study anything, may need years to change research direction, because of the need to find new sources of funding, or to obtain specialized facilities or training.

* How do we select which treatments to cover from among hundreds of possibilities? Of course there is no formula. But one mental tool has proved helpful for this kind of unstructured decision. Like the gardener who provides a fertile bed, plants many seeds, and then selects the plants which grow best, one can provide a fertile ground for many different hypotheses, ideas, or treatment options, and see which ones continue to do well over time. Whenever we learn about a new viewpoint, a new way of judging, evaluating, or prioritizing the available theories or treatment options, we apply it to the various potential treatments as a test. Those treatments which continue to look strong under all or almost all points of view remain leading candidates; those which fail any of the evaluation viewpoints are weakened. The strongest candidates for the purpose at hand (for us, to write articles about) emerge from this process organically.

This approach gives answers in weights or probabilities, not as a definite yes or no. It moves directly to the practicality of each treatment in a single integral process, without making a special stop at the question of efficacy. This is different from the philosophy now prevailing in drug development and regulation, which makes proof of efficacy the most critical part of the process. Obviously efficacy is essential; but in practice, we often have no exact knowledge of it, and cannot put all decisions on hold until we do.

Other criteria we use in deciding what treatments to investigate and write about are more immediate and straightforward:

* We have long believed that one of the best AIDS survival strategies at this time is to try a number of safe and well- supported treatment possibilities, keeping the ones which seem to help and discarding the others, to find treatment combinations which work best for oneself. This process is an individual one; the same treatments may not work for someone else. At AIDS TREATMENT NEWS our most important function is to provide accessible treatment information, to help increase and improve the options available.

* We also cover public policy issues which affect treatment research and development, to help the AIDS community work together toward better drugs in the future. This work is essential, because individual decisions alone are not yet enough for most peoples' survival. We need better treatments, and therefore we need high quality, well planned, practical research; community involvement is critically important for assuring it.

* We seldom rush to be the first with the news. Instead, we talk with people who are well informed about treatments, and we prefer to report a new development after it has already acquired some knowledgeable following, rather than before. It is hard to judge a treatment early in its history, when little data is available; also, most potential drugs in early development will ultimately fail. So instead of competing for scoops, we let the community of experts judge first; then we contribute by bringing together the most important information and making it easy to understand.

In evaluating expert or other opinions, we consider the credibility and also the motives of the source. More trustworthy information comes from reputable physicians and scientists who are putting their reputations on the line, or from people in the AIDS community who have no financial or other personal conflict of interest and are motivated only to find good treatments. Less trustworthy information comes from promoters with products to sell.

* Occasionally we learn about a treatment which clearly needs more attention than it is getting, and then we may publish one or more major articles, without waiting for expert consensus. Sometimes we have been right, sometimes not; often no one yet knows. Examples include our reports on AL 721 (April 1986), aerosol pentamidine (January 1987), dextran sulfate (May 1987), fluconazole (September 1987), DHEA (January 1988), hypericin (August 1988), ddI (January 1989), roxithromycin and azithromycin (March 1989), NAC (October 1989), aspirin (August 1990), and clarithromycin (October 1990). We consider these articles among the most important work we have done.

* We are less impressed than some others by theories, unless they have at least some preliminary practical results which support them. Even leading scientists sometimes make the mistake of going directly from a theory to a complex, costly, and time- consuming trial or other project, without finding ways to do quick checks first to see if their theory seems to be working in practice. As a result, their projects may never get off the ground, or may tie up substantial resources for no good purpose. Today's understanding of AIDS is far more primitive than the public realizes, than the experts' clean charts and pictures suggest. For now, therefore, theories serve mainly as guides or suggestions for what might be tried; they are not descriptions of what is actually happening with the disease.

* When AIDS TREATMENT NEWS began, we planned to cover "experimental and alternative" treatments. (Later we changed the wording of our statement of purpose to "experimental and complementary," to emphasize that non-standard treatments should not replace good conventional medical care, but rather add to it.) Our original plan was not to cover conventional treatments, since physicians and patients would have better sources for this information. But recently some of our most valuable articles, as judged by what our readers tell us, were closer to conventional medicine -- for example, the overview of pneumocystis prophylaxis (November 1990). Interviews with leading HIV physicians have also been important; we hope to have more of them in the future.

* Some readers feel that we have become too conservative; they want more coverage of "alternative," non-mainstream treatments. We agree that more coverage is needed, but we have mixed feelings on this issue. When we began over four years ago, useful mainstream research was almost nonexistent; the leading edge of AIDS treatment was in the underground. But today the leading edge is often in major pharmaceutical companies or medical centers. We must cover the most important news from wherever it occurs.

Most of the treatments which are outside of the medical mainstream but still in widespread use (for example, garlic, exercise, or acupuncture) have not been rejected on the basis of evidence, but rather not studied because they lack commercial potential. Some may well be of value; and it is important in any case to provide unbiased information on treatments which people are using. Perhaps we underemphasized complementary treatments in 1990. But it is hard to evaluate treatments when little has been published in mainstream medical and scientific literature.

* One dilemma is that the advances which ultimately may be most important, such as the rational design of new chemical entities, may have no near-term relevance to our readers, as the substances are not available, or not suitable for use because of unknown risks. Still we need to cover this news so that our readers will be oriented to what is happening. Perhaps the most important issue now facing the community is how to reform the regulatory process so that important potential advances (for example, the new Merck or Boehringer Ingelheim non-nucleoside drugs, or the protease inhibitors now being developed by many pharmaceutical companies) will have a rational development path, without the senseless delays which have so far been imposed. People need to realize that there are potentially major advances now entering human trials, in order to understand how critical this issue is.

Geographical Issues

When we write about treatments, it does not matter where the news comes from, as long as we can substantiate it. But when we cover treatment activism, are we a national publication, or are we partial to San Francisco and the West Coast, where we are located?

We want to provide national coverage, and therefore we make efforts to avoid a San Francisco bias. But we also believe it would be a mistake to aim to be entirely geography-free. Obviously we can attend more meetings locally than in other areas such as New York or Washington; we can know the local people, projects, and issues better. Part of our mission is to report to a national audience from San Francisco. If, for example, we were located in Washington, DC, we would publish the same news about new treatments, but otherwise we would focus on Federal activities affecting treatment development -- which we cannot cover in depth from San Francisco.

Covering the News

Should AIDS TREATMENT NEWS focus more effort on in-depth reports on stories which appear in the general news media, providing the background which the news stories do not? At this time we have decided not to. The main reason is that we have found that most treatment news reported in the general media is not valuable. To say so in print would require research time to verify each case, directing our time, attention, and space in the newsletter to what is not important. Another reason is that, as explained above, we prefer to wait and hear what the community of experts has to say before deciding which treatments to cover. The media, however, is most interested in a story when it is new, and at that time the expert evaluation we seek may not be available.

Medical and AIDS Publications

Should we specialize in abstracting AIDS news from medical journals? Again we have decided not to. One reason is that at least two newsletters already perform this function: ATIN: AIDS Targeted Information Newsletter (for subscription information, call 800/638-6324, or 800/638-4007 in Maryland); and Acquired Immune Deficiency Syndrome Newsletter, 1680 N. Vine St., Suite 1006, Los Angeles, CA 90028.

Let Us Know

Much of our information comes from readers; we pay careful attention to all correspondence and comments we receive. Please let us know if you have any ideas about how we could make AIDS TREATMENT NEWS more useful to you or to others.

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