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AIDS Treatment News

Wasting Syndrome -- Affordable Treatments


AIDS TREATMENT NEWS #226, July 7, 1995

The May issue of Treatment Issues, published by GMHC (the Gay Men's Health Crisis, in New York), includes several excellent articles on treatment of wasting syndrome -- severe loss of lean body mass not due to obvious causes such as nutritional deficiency or intestinal infection -- in AIDS. The bottom line is that there are inexpensive potential treatments, and some early experience suggests that most patients can be successfully treated by using one or another of them. This may mean that only a few patients will need the extremely expensive treatments, which are out of reach economically for most people -- human growth hormone, which costs about $1000 per week, or total parenteral nutrition (TPN), which usually costs even more.

[Note: While human growth hormone costs about $1000 per week, the growth hormone for cows (which will not work in humans) costs $3 per week. Both are made by similar recombinant technology; we have been told that the amino acid sequences are two-thirds identical. But for people the commercial price is $42 per milligram (somewhat less for "cost recovery" for a special AIDS program, where the drug has not been fully approved). For the closely related agricultural product, however, the price to dairy farmers, we have heard, is less than 2 cents per milligram. Someone should investigate how the price of human growth hormone has remained so disproportionate to the cost of production for many years. A number of companies sell this drug throughout the world -- at the identical price of $42 per mg. The substance itself is produced by the body and cannot be effectively patented; processes for manufacturing it are patented, and there has been considerable patent litigation.] [Persons who need human growth hormone and cannot pay for it should realize that there is an indigent program, sponsored by Serono Laboratories, Inc., the company which researched the use of human growth hormone for AIDS-related wasting. Serono provides the hormone without charge to a small number of patients who need it and have no way to pay.] An example of an affordable treatment for AIDS-related weight loss (when not too severe) is testosterone enanthate, used with an appropriate exercise program. In some cases nandrolone, an anabolic steroid, is added as part of the regimen. While this treatment has not been proven in clinical trials, some leading AIDS physicians are using it and finding good results; Treatment Issues mentioned Marcus Conant in San Francisco.

"We are frequently using testosterone to treat people with AIDS-related weight loss," Dr. Conant told AIDS TREATMENT NEWS. "And in some cases we are also using nandrolone when these people have shown some promise of weight gain." Dr. Conant explained that the nandrolone generally worked well only in those who had already responded successfully to the testosterone.

What about people with true wasting -- who have lost more than ten percent of their body weight, and continue to lose weight despite testosterone, exercise, and nandrolone? Dr. Conant's team has found that these people respond very well to human growth hormone; 14 of the 16 severely wasting patients they have treated have gained weight with the hormone, according to Gordon Sanford, PA-C, a physician's assistant in Dr. Conant's office. And they have not found any other treatment which worked for those patients -- the FDA-approved wasting treatments Megace or Marinol did not work. [However, Conant's experience cannot rule out thalidomide, or ketotifen (see below). Thalidomide has seemed to work for severe AIDS-related wasting in small studies; larger trials are needed to confirm this finding. Ketotifen has led to striking weight gain in a few cases; it needs a formal study.] Your physician can call Dr. Conant's office in San Francisco, and talk to Dr. Conant, or to Gordon Sanford, to learn the doses, and other critical details and important information on how to use testosterone treatment most effectively.

[Note that this discussion of testosterone, and the other potential wasting treatments below, assumes that the patient has already had a complete workup to look for any obvious causes of weight loss, such as parasites or other intestinal disease, MAC or certain other infections, lymphoma, inadequate food intake, etc. These specific causes need to be considered first. The potential weight loss/wasting treatments mentioned here are tried when such specific causes cannot be found.] Another affordable possibility for treating wasting syndrome is ketotifen, believed to be a very safe drug, which is widely used in Europe for asthma and allergies, but not approved in the U.S. You can get ketotifen through the PWA Health Group in New York (phone 212/255-0520). The main drawback is that not much research has been done yet on using it for AIDS-related wasting; also, since the drug is not regularly used in the U.S., most doctors here will not know anything about it. The main advantage is that there seems to be little risk, cost, or other "down side" to trying it.

A third affordable possibility is thalidomide, which is now available under a special, tightly controlled "underground compassionate access" program through the PWA Health Group, or through Healing Alternatives, a similar buyers' club in San Francisco. (Thalidomide is also available through an official, FDA-approved compassionate access program for people with AIDS, but at this date that is only for treatment of aphthous ulcers, not for treatment of wasting.) The main danger, of course, is birth defects if this drug is taken in pregnancy. In addition, larger doses of thalidomide can cause neuropathy or other adverse effects.

Two treatment are FDA-approved for AIDS-related wasting syndrome: megestrol acetate (Megace), and also dronabinol (Marinol), which uses the active ingredient of marijuana as an appetite stimulant. Both of these are expensive; and it is controversial how effective they are for increasing lean body mass, which is what a wasting-syndrome treatment must do. The May Treatment Issues mentions these treatments, but does not discuss them in depth. (We have been told by others that persons who use Megace should have their testosterone levels monitored.) [Note: on July 4 we talked to Dave Gilden, editor of Treatment Issues and author of an article on human growth hormone in the May 1995 issue. He said that if he were publishing that issue today, it would have more information on exercise, and more coverage of Megace and Marinol. Also, he would urge activists to campaign to get the FDA-approved compassionate access program for thalidomide expanded to allow persons with wasting syndrome -- not only those with aphthous ulcers, as is the case today -- to receive the drug. And he would emphasize the great need for more research in AIDS-related wasting.] We strongly recommend that anyone interested in wasting syndrome get the May 1995 Treatment Issues; it includes background and details which we only summarized above. Better yet, anyone interested in AIDS treatment can get a complete set of the back issues of this very useful publication for a suggested donation of $25. To order, send $3 for the May issue only, or $25 for a reprint of all the back issues, to: GMHC, Treatment Education, 129 West 20th St., New York, NY 10011. We also recommend subscribing to Treatment Issues, suggested donation $35/year (11 issues) for individuals, $70/year for physicians, institutions, or international subscriptions.

[Note: For additional information on wasting and its treatments, also see "Turning the Corner on Wasting? A Symposium on Wasting Disorders," by Jeff Getty, in BETA (Bulletin of Experimental Treatments for AIDS), June 1995; BETA is published by the San Francisco AIDS Foundation. And see Notes from the Underground, April/May 1995, available without charge from the PWA Health Group, 212/255-0520.]


Copyright © 1995 -AIDS Treatment News, Publisher. All rights reserved to AIDS Treatment News (ATN), Email AIDS Treatment News .

Information in this article was accurate in July 7, 1995. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.