KS: INFORMATION NEEDED

A statement by Robert Gallo, M. D., of the U. S. National Cancer Institute, suggested that a much-improved potential treatment for KS may have been discovered (see AIDS TREATMENT NEWS #99, March 16, 1990, page 3). But neither Gallo nor anyone else is saying more. We do not know what the drug is, nor what tests have been done.

Some rumors are NOT correct:

* The report that the drug is "MDS," from the Kowa company, is erroneous. This rumor started when a government press office, which itself did not know the name of the drug, asked a Japanese dermatology expert -- who guessed that it might be "MDS," as he knew that American researchers had been interested in that. In fact, "MDS Kowa" is the name of the most popular brand of dextran sulfate, which is no longer in widespread use as an AIDS treatment.

* A report in a Japanese-language newspaper about 26 patients treated successfully with a drug from Japan refers to Kemron -- a low-dose oral interferon tested in Kenya. This research is interesting (see The New York Times, April 4; also
see AIDS TREATMENT NEWS #97, February 16, 1990, page 6), but almost certainly it is not what Gallo's lab is studying.

* In our last issue we published one physician's guess that the chemical Gallo referred to may be a form of beta cyclodextrin. We have since heard nothing to confirm that this is the drug.

If there has been an important advance against KS, why would it be kept secret? There could be many reasons, some more legitimate than others: serious danger of toxicity, supply problems, need to make business arrangements, desire to be published in a medical journal which wants a news splash, or simply business as usual. But even the better reasons do not justify secrecy if it leads to delaysPfor example, by putting all responsibility on a few key people, who are often busy with
competing obligations or problems. If something important has been discovered, it should be shared with the public so that others can use their resources and influence to help overcoming obstacles (such as red tape, lack of money, or just being too busy). But people cannot help if they do not know that anything has happened.

AIDS TREATMENT NEWS would like to hear, anonymously if necessary, from anybody with treatment information which is too important to be kept secret due to business as usual.

STATEMENT OF PURPOSE

AIDS TREATMENT NEWS reports on experimental and complementary treatments, especially those available now. It collects information from medical journals, and from interviews with scientists, physicians, and other health practitioners, and persons with AIDS or ARC.

Long-term survivors have usually tried many different treatments, and found combinations which work for them. AIDS Treatment News does not recommend particular therapies, but seeks to increase the options available.

We also examine the ethical and public-policy issues around AIDS treatment research and treatment access.