AIDS TREATMENT NEWS Issue #141, December 23, 1991

Two updated HIV clinical trials directories have just been published, covering Southern California and the San Francisco Bay Area. They contain useful information for anyone interested in participating in a clinical trial, and include community-based trials and observational databases as well as government and pharmaceutical company research.

Directory of HIV Clinical Trials in the Bay Area, Winter 1991 is published by the San Francisco Community Consortium. It lists 79 open trials in the Bay Area, arranged by disease or symptom treated. It includes a glossary, lists of community resources and trial sites, how to enroll in a trial, and information for women and injection drug users. Call 415/476- 9554 or write to: Community Consortium, 3180 - 18th Street, Suite 201, San Francisco, CA 94110 for a free copy.

Southern California HIV Treatment Directory, Vol. 1, No. 3 lists 64 trials in the Los Angeles area, including those conducted outside major medical centers or without Investigational Review Board (IRB) approval. It is also organized by symptom or disease treated and includes a glossary. People with HIV can get a free copy of the directory, and a $10.00 donation is requested of others. It is also possible to pay $40.00 for a year's subscription of four volumes. Call 213/469-5888 or write to: Southern California HIV Treatment Directory, 1800 N. Highland Ave., #610, Hollywood, CA 90028.

** Care and Support Grants for New Organizations or New Projects

People Taking Action Against AIDS (PTAAA), an all-volunteer fundraising organization, is seeking applications for grants to newly-formed groups or new projects to offer care or support to people with AIDS. Underfunded groups outside of major urban areas will be given priority, as will 501(C)3 organizations.

To apply, request a grant application form no later than January 24, 1992, from: PTAAA, 31 West 26th St., Second Floor, New York, NY 10010, or by fax to 212/481-1373. For more information, call Don Hall at 212/481-1374.

Note: PTAAA has raised funds for AIDS research and care organizations since 1987, mainly through an annual event on Long Island. In 1990, it gave 12 grants of $2,000 to $5,000 each, and also several larger grants totaling $187,000. Projects funded included hot meals, hospital equipment not covered by Federal grants, malpractice insurance for rural volunteer nurses, an AIDS support center in rural Georgia, and Bailey House and AIDS Treatment Registry, agencies well known in New York City.

A unique kind of project -- not sponsored by any organization except PTRAA -- is a Dallas-wide scholarship essay competition for high school seniors "designed to stimulate discussion in the high school classroom on issues of AIDS these young people are facing today." The larger grants were to the Children's AIDS Foundation, Friends of Clinical Care Center, the Pediatric AIDS Foundation, the Long Island Association for AIDS Care, and to New York's Community Research Initiative for specific research projects.

** Controlling Diarrhea: Octreotide (Sandostatin) Studies Recruiting

Dangerous weight loss (cachexia) in people with AIDS can result from malabsorption and chronic diarrhea as well as loss of appetite (anorexia). Some of the choices for countering diarrhea include diphenoxylate (Lomotil), loperamide (Imodium), cholestyramine (Qestran), and tincture of opium (Paregoric).

A newer, somewhat experimental option is somatostatin, a naturally-occurring peptide-inhibitor associated with the regulatory activities of the digestive system. Somatostatin can be given intravenously to treat the processes that contribute to diarrhea, but unfortunately the half life of this substance is impractically short.

Octreotide is a synthetic agent given sub-cutaneously that approximates somatostatin's activity, only with a much extended half life. Octreotide is now approved for certain non-AIDS- specific indications, and is marketed by Sandoz under the label Sandostatin.

Sandoz has designed a protocol to study Sandostatin in people with HIV-related diarrhea which has not responded to other treatments. There are 19 local sites for this study; their locations and the details of exclusion and inclusion criteria can be obtained by calling 800/TRIALS-A.

** Controlling Weight Loss: Dronabinol (Marinol) Trials Recruiting

Dronabinol is a manufactured version of THC, the principal active agent in marijuana. Dronabinol and marijuana have both been reported to control nausea and stimulate appetite in people with AIDS or cancer. For background information see issues #131 and #139 of AIDS TREATMENT NEWS .

Developed jointly by UNIMED and Roxane Laboratories under the trade name Marinol, dronabinol is approved by the FDA to treat nausea. The makers would like the labeling expanded to include treatment for loss of appetite, which is a serious problem for many people fighting cancer or opportunistic infections. Robert Gorter, M. D., an Assistant Professor of Medicine at the University of California San Francisco who has studied dronabinol in patients with HIV infection, discusses it in "Management of Anorexia-Cachexia Associated With Cancer and HIV Infection," published in the September 1991 supplement of the journal Oncology.

There are 25 sites recruiting for the current Marinol protocol that is hoped to demonstrate appetite improvement. To locate the closest local study, interested persons may call 800/TRIALS-A.

**Alternative or Complementary Treatment Approaches

A number of alternative or complementary treatment approaches have enjoyed several years of support in the HIV/AIDS- affected communities. But for the most part, when these approaches involve unrefined or imported substances, they have been casually dismissed by mainstream research, and therefore lack the rigorous clinical data necessary to assess their therapeutic value.

AIDS TREATMENT NEWS has tried to call attention to some of these potential treatments in the past, but often we cannot pursue each of them adequately or comprehensively. Following is a list of some we have covered and some we have not. We would like to hear from readers who have had recent substantial experience, negative or positive, with any of these. We understand that such information must be considered anecdotal, and so can only lead to suggestions and not conclusions. If the response to this call is significant, we will report the results -- anonymously, of course. We have not included NAC or hypericin in this list, since these are now in clinical trials.

* silymarin (milk thistle extract) * aspirin * glycyrrhizin * co-enzyme Q-10 * Artemesia annua * Iscador (Viscum album or mistletoe extract) * vitamin C or other vitamins * DHEA * acupuncture * Chinese (or other) herbal treatments

This list is only suggestive. If you have strong feeling for or against other treatments due to your experience or first- hand observation, please let us know.

Reports of experiences can be mailed to: Denny Smith, AIDS TREATMENT NEWS, P. O. Box 411256, San Francisco, CA 94110, or call Denny at 415/255-0836. Please include the dosage and duration of each treatment, as well as other drugs or therapies used concurrently. It would help if you tell us how we could contact you for more information.

911223
ATN14105

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 1991. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .