AIDS TREATMENT NEWS No. 060 - July 15, 1988
John S. James
The list below shows some of the treatments we plan to investigate; we don't yet know about safety, rationality, or availability/affordability of some of them. You could help by bringing others to our attention, especially any which have worked well for you or persons you know. Call Denny Smith at AIDS Treatment News, (415) 255-0588; if the phone is busy during the day you can call any time at night and leave a message. Or write to: AIDS Treatment News, attn: Options, P.O. Box 411256, San Francisco, CA 94141.
We have no exact cut-off for affordability, but are aiming for treatments costing less than a dollar a day; some cost only pennies a day. Because of this cost criterion, many treatments which patients should consider, such as AZT, acyclovir, and dextran sulfate, do not appear on this list. The big question, of course, is what role the substances listed should have in AIDS/HIV treatment, if any.
The list so far, in alphabetical order:
* acidophilus * aloe vera * antabuse (as DTC substitute) * aspirin (or indocin, as prostaglandin inhibitor) * BHT * Chinese herbs * chlorophyll (including wheat grass, algae, chlorella, etc) * coenzyme Q * dapsone * DHEA * DMG, TMG (dimethylglycine, trimethylglycine) * DNCB * DTC (imuthiol) * fatty acids * ganoderma * garlic * germanium * homeopathy * hydrogen peroxide * lecithin * linaza seeds (used in Central America for nausea) * lysine * macrobiotics * monolaurin * naltrexone * propolis * selenium * septra * shiitake * vitamins: C, B12, others * zinc
We may also look at attitudinal approaches, lifestyle changes, and self care.
What distinguishes the "affordable" list from more mainstream lists of experimental treatments, such as found in the AIDS/HIV Experimental Treatment Directory compiled and published by AmFAR (American Foundation for AIDS Research), is not that the "affordable" ones are necessarily inferior, but that less is known about them. Neither industry nor government has had any serious interest in treatment possibilities which do not have commercial potential. Yet the treatments which develop a grassroots following without promotion, like most of those above, would be excellent candidates for small, well-managed, scientific clinical trials. For one thing, the grassroots treatment possibilities are generally safer than the high-tech options which generate commercial, government, and professional interest. And they are available now, not after several years of bureaucratic delay and frequently ill-designed, unethical, and unworkable trials.
The U.S. needs public policy which recognizes that people must and will make treatment decisions, and then supports them in that process.
We at AIDS Treatment News are becoming increasingly unhappy about reporting on treatments which have only fragmentary, anecdotal, or theoretical evidence of effectiveness--such as many of those listed above. At this stage in the epidemic, there should be direct scientific evidence that treatments actually benefit certain groups of patients. But until we have a public commitment to do the research needed to help people stay alive, we see no choice but to continue to report what evidence there is.
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