"Alternative" Treatment Activism
A version of this article originally appeared in Treatment Issues in the Winter of 1993/94. It was edited posthumously from the writings of Jon Greenberg, who died of AIDS on July 12, 1993.
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 or Complementary Health Care," they differ substantially in philosophy, modality, cost, and other important ways. However, they all share one unfortunate similarity -- virtually nothing is objectively known about their activity in the human body and their efficacy for treating HIV/AIDS.
The AIDS community tends to fall into two separate camps regarding alternative therapies. Some dismiss all alternative treatments, regardless of evidence that demonstrates efficacy, while others defend all alternative therapy, regardless of evidence suggesting toxicity or lack of benefit. The reality probably lies somewhere between these two extremes; some alternative therapies may be effective, some are clearly ineffective, and most possess some potential for toxicity. The chief difficulty with using alternative therapies is a lack of empirical data and an absence of commercial scientific interest in these compounds. Presently, there is no research infrastructure to systematically address the potential benefits and risks of alternative treatments using controlled experiments, the most rigorous known method of producing convincing data about a treatment's effects. Every FDA-approved medicine for HIV has gone through this process. Why not study all the treatments that people with HIV use in the same way?
Obstacles to Testing Alternative TherapiesOne goal of alternative therapy activists should be to advocate for controlled clinical trials of alternative treatments, so that people can make informed decisions about using them and that wider acceptance can be gained for those treatments that are found to be effective. Our goal should be to make the term "alternative" obsolete. At present, very few alternative treatments are ever studied in a government- or university-sponsored clinical trial. They have never gone through a process that details their toxic effects in humans; assesses bioavailability, pharmacokinetics, safety and efficacy; or determines their impact on the immune system.
Since toxicity studies on most alternative therapies have not been conducted -- and since some alternative treatment practitioners may recommend these therapies at very high doses -- it must responsibly be asserted that toxicities may occur. Yet, for the most part, if a proponent of a specific alternative therapy has observed negative side-effects, there is no mechanism, no mandate, no regulation, and therefore no institutionalized reason to disclose such information. And, of course, profit can be as big a motive for the "alternative" medical community as it is for the conventional pharmaceutical industry.
Even when 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. Design flaws, poor execution, or too-limited sample size prevent these studies from generating useful or reliable information.
Making Decisions in the Information VacuumIt is tiresome and sometimes confusing to depend on other people's stories in order to make 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 biological, emotional, historical, psychological and intellectual make up.
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. We are too often forced to make decisions without much information. Unfortunately, getting the information we need may require a long process. And even controlled clinical studies of alternative treatments, although necessary to gather scientific information, may ultimately yield little useful information. Quite frankly, results from controlled clinical studies 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 also need to know that doctors do not have all the answers and that much of the information they use to make treatment decisions can be learned. Believing that only doctors and orthodox medicine holds the answer can also be an obstacle to the self-empowerment of people with HIV. Ideally, the trust in a treatment decision should come from within.
Taking ActionIt is important to identify through controlled clinical studies those treatments that seem most promising for potential development. We must make contacts among key researchers in pharmaceutical settings, the federal government, research universities, and institutes across the country. (In pursuing these issues, I've found it easier and more expedient to speak the language of the researchers and the scientific community than it is to force them to speak the language of people with AIDS and alternative treatment activists.) We must create an interest in the research establishment to address the obstacles to research on 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 take action. We need to get their attention.
Controlled clinical studies may offer the only opportunity to directly evaluate alternative treatment options using well-defined criteria. We should not have to place extraordinary faith in one practitioner or theory of disease and treatment, whether conventional or alternative. We need answers to our questions.
This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.