AEGiS-GMHC: An Alternative Treatment Activist Manifesto

Important note: Information in this article was accurate in 1993. The state of the art may have changed since the publication date.

An Alternative Treatment Activist Manifesto

Gay Men's Health Crisis: Treatment Issues, Volume 7 no. 11/12 - Winter, 1993/94
Jon Greenberg

This article was compiled and edited posthumously by Mary Beth Caschetta, Rocco Giannetti, and Risa Denenberg from the writings of Jon Greenberg, who died of AIDS on July 12, 1993. Jon was working on this special edition at the time of his death. It was Jon's foremost belief that true alternative treatment begins with self-empowerment. "Information and self-empowerment are the sources of all our power and ultimately the place from where all healing begins," he wrote not long before his death. For more information on research advocacy for alternative therapies write to the Treatment Alternatives Project c/o: the PWA Health Group, 150 West 26th Street, Suite # 201, New York, NY 10011.

Since the beginning of the AIDS crisis, a number of "alternative" medical treatments have been proposed and used with unknown success, such as herbal compounds, nutritional supplements, traditional Chinese medicine, as well as physical manipulation techniques and spiritual approaches. Although these methods have all been lumped together under the generic category "Alternative Health Care," they differ substantially in philosophy, modality, cost, and other important ways. However, they all share one unfortunate similarity - virtually nothing is known about their activity in the human body and their efficacy for treating AIDS.

The AIDS community tends to fall into two separate camps regarding alternative therapies. Some dismiss all alternative treatments, regardless of the evidence demonstrating efficacy, and others defend all alternative treatments, regardless of evidence demonstrating toxicity or lack of efficacy. The reality of most alternative therapies probably lies somewhere between these two extremes. Some alternative therapies may be effective, some are clearly ineffective, and most possess some degree of toxicity. The chief difficulty with using alternative therapies is a lack of empirical data and an absence of scientific interest in these compounds. Presently, there is no research infrastructure to address systematically the potential benefits and risks of alternative treatments.

Obstacles to Testing of Alternative Therapies

The goal of alternative treatment activists is to advocate for controlled clinical trials of alternative treatments, so that approval and acceptance can be gained for those treatments which are found to be effective. Our goal is to make the term "alternative" obsolete. At present, very few alternative treatments are ever studied in a government or university-sponsored clinical trial. Because no funding exists for these projects, and because researchers and other treatment activists have not made these concerns a priority, most of the alternative treatments used by people with HIV have never been tested. They have never gone through the process which details their toxic effects in humans, assesses pharmacokinetics, bioavailability, safety and efficacy, and determines their impact on the immune system. This situation is unacceptable, especially considering that most substances which possess efficacy also prove to have toxicities.

Since toxicity studies on most alternative therapies have not been conducted - and since many alternative treatment practitioners often recommend these therapies in very high doses - it must be asserted that they may be toxic. For the most part, if a proponent of a specific alternative therapy has observed negative side-effects, there has been no mandate, no regulation, and therefore no institutionalized reason to disclose such information. Additionally, profit is as big a motive for the "alternative" medical community as it is for the conventional pharmaceutical industry.

While some alternative treatment proponents have no financial investment in proposed therapies, the emotional investment in the therapy's success is usually high. Many alternative treatment enthusiasts have a strong desire to prove conventional Western medicine wrong. This sentiment sometimes precludes objective evaluation. Very often, claims of efficacy and recommendations for alternative therapies are based on anecdotal reports or loosely designed observational studies. In fact, so far no study of an alternative treatment in AIDS has been able to stand up to scientific scrutiny. Design flaws, poor execution, or too-limited sample size prevent these studies from generating useful or reliable information.

Making Decisions in the Information Vacuum

Every person with HIV uses a variety of methods to gather information on treatment options. How much do I take? How often do I take it? Is it a pure substance? What are the possible side effects? Will it work? This decision-making process is complex and individual. And controlled clinical studies of alternative treatments, although necessary to gather scientific information, may ultimately yield little useful information. Quite frankly, controlled clinical studies are often open to interpretation and often raise as many questions as anecdotal reports or personal histories do.

Health care practitioners who share questions, doubts, criticisms about treatment (as well as beliefs in a particular therapy), can help people with HIV most by encouraging patients' responsibility for his or her own decision-making process. People with HIV need to know that doctors do not have all the answers. Right now, even with empirical data about certain non-alternative therapies, there are more questions than answers. Believing that doctors and orthodox medicine holds the answers can be an obstacle to the self-empowerment of people with HIV. The trust must come from within, not outside. At the moment, therefore, we are forced to make decisions without much information. To get the information we need will be a long process.

But it will be easier and more expedient to speak the language of the researchers and the scientific community than it will be to force them to speak the language of people with AIDS and treatment alternative activists. It is also tiresome and sometimes confusing to rely on other people's stories (not just doctor's stories) in order to make a treatment decisions. As we all know, these stories are often colored by biases and histories that we may not necessarily share. This is not to say that these personal experiences are invalid for those who believe and promote them. But each of us has a different emotional, historical, psychological and intellectual make up.

Controlled clinical studies may offer the only opportunity to evaluate directly treatment options from well-defined criteria. We should not have to place extraordinary faith in one practitioner or theory of disease and treatment. We need answers to our questions.

It is important to identify through clinical studies those treatments which seem most promising for testing and potential development. We must make contacts among key researchers in pharmaceutical settings, the federal government, research universities, and institutes across the country. We must create an interest in the research establishment to address the obstacles to research for alternative treatments. We must learn how to write concept sheets, the blueprints for clinical trials designs, to spark the interest of researchers. We must strategize the best way to study the compound in question and the most politically efficient manner to initiate study. This often involves writing letters, making phone calls, and staging political actions to urge all the parties involved to action. We need to get their attention. Finally, all of the steps in this process must be detailed, monitored, and documented.

Copyright © 1993 - Treatment Issues. Reproduced with permission. Treatment Issues is published twelve times yearly by GMHC, Inc. All rights reserved. Noncommercial reproduction is encouraged. Subscription lists are kept confidential. GMHC Treatment Issues, The Tisch Building, 119 West 24th Street, New York, NY 10011 fredg@gmhc.org http://www.gmhc.org

AEGiS is made possible through unrestricted grants from Boehringer Ingelheim, Bridgestone/Firestone Charitable Trust, Bristol-Myers Squibb Company, Elton John AIDS Foundation, the National Library of Medicine, and donations from users like you. Always watch for outdated information. This article first appeared in 2003. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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