TREATMENT ISSUES -- The GMHC Newsletter of Experimental AIDS Therapies; Volume 5 Number 3 -- March 28, 1991
Kevin Armington

In contrast to the slow production of effective treatments by the pharmaceutical industry, alternative treatments have proliferated rapidly in the last few years. Experimental treatment publications like Treatment Issues and AIDS Treatment News, in addition to countless others, cannot cover each and every substance/therapy that is touted as promising. The purpose of this article is to empower the reader to make informed decisions about alternative therapies. The following points should be considered when gathering and evaluating information about a new treatment.

Most of the individual issues raised here would not suffice as a "litmus test" to judge a treatment. Rather, a number of issues taken together will help you make an informed, responsible decision.

Evaluating Treatments

Alternative treatments for HIV infection are sold and advertised all over the place. Many are available over the counter as "supplements" in pharmacies and health food stores. Others classified as "drugs" are sold through buyers' clubs or are administered only in a clinic or office. Mail-order ads for alternative treatments are commonly found in community publications. Sometimes public forums are held to promote a new treatment. However you hear about a new treatment, keep the following suggestions in mind:

Do not rely on only one source to make your decision. Discuss potential treatment options with your health care providers and friends. If your doctor will not engage in a dialogue about alternative therapies, you may want to consider changing doctors or consulting with another physician. Getting a new doctor may not be so easy for people with limited or no insurance. Call some reliable hotlines and explore your options (GMHC: 212-807- 6655; PWA Coalition. (212) 532-0568 in New York, 1-800-828-3280 outside of New York; Project Inform: (415) 558-9051 in California, 1-800-822-7422 outside of CA). Some hotlines keep doctor referral lists and others dispense information about treatments. Most importantly, do not make your decision in a vacuum.

Beware of claims that a treatment is a "cure" or will have miraculous effects. We all want to be optimistic, but there is nothing crueler than overblown reports about new treatments. People or publications that make uninformed promises about a treatment before it has been adequately researched increase confusion and can ultimately hurt people. Claims must be substantiated by understandable information about safety in people with HIV infection and proof that the treatment has, or could have some beneficial effect.

Prohibitively high prices for experimental treatments can be the tipoff to potential fraud. The costs of alternative treatments are absorbed by the individual, since it is extremely rare for insurance companies or Medicaid to reimburse for treatments that are not drugs licensed by the FDA. Unfortunately, there is no shortage of charlatans willing to take huge sums of money for unproven and sometimes even harmful "treatments."

Try to investigate any clinic you may visit, or have a friend look into it if you cannot do so yourself. There are several examples of clinics in the U. S. and abroad that offer expensive treatment packages. Usually, treatment requires in-patient stays for several weeks. Some of these ventures require strenuous travel to remote parts of the world. Besides financial considerations, risks may include substandard medical care and exposure to unfamiliar disease-causing microorganisms, which can strain the immune system. If no independent information is available about the clinic, it may be a negative sign. No clinic has come forth with any magic answers yet. Some, after having charged a fortune, send people home sicker than when they arrived.

Interviewing the Treatment Promoter

If you are considering trying an unproven treatment, be a smart consumer and interview the person promoting it. How much do they know about AIDS and HIV? If they reject commonly accepted theories about AIDS, are they at least familiar with these theories? What is their training? Are they interested in specific information about your medical condition, or are you treated as a faceless customer? Do they answer your questions patiently in language you understand or do they "talk down" to you? Are their explanations about the treatment overly simplistic or overly complex? Do they seem eager to foster a sense of distrust between you and your current health care providers? Is there an attempt to separate you from your current network of support? How has their treatment been evaluated so far? And what is the justification for using their treatment for AIDS?

You deserve honest, direct answers to any questions you may have. If someone suggests that you try a treatment that has not been objectively evaluated (for example, published in a peer- reviewed medical journal or presented at a significant AIDS medical conference) proceed with caution. Consult with your current health care providers and friends who are familiar with AIDS. Trust your vibes. If you have a funny feeling about someone pitching a treatment, listen to your instincts and try not to act spontaneously.

Media Distortion

There is a familiar scenario that characterizes public awareness of new potential treatments for HIV disease. It goes something like this: an item on television or in the newspaper reports a claim that a "cure" for AIDS has been discovered; many people with AIDS begin a furious quest to obtain the treatment; the initial positive results are not reproduced in further studies; scrutiny reveals that the groundbreaking reports were blown out of proportion; a sense of hopelessness sets in. This cycle has been dubbed the "drug-of-the-month" phenomenon.

With a few notable examples, the lay media has done an inaccurate job reporting on AIDS treatments. News reports and articles on AIDS treatments tend to focus on the most sensational aspect of the story. Often the facts are either absent or utterly distorted. Inaccurate reports can create very damaging impressions in the community. In general, the lay media probably reports information too early. Splashy accounts of drugs that have great antiviral effect in the test tube make good copy, but have limited value to most people. Only about 20% of drugs make it from the laboratory to the pharmacy.

Seek out a variety of opinions to reduce possible bias. Even certain community publications have a very predictible editorial slant, calling their objectivity into question. In general, it is not a good idea to rely on one source for your treatment information. There are certainly plenty of treatment publications available free or at low cost [See "Other Resources" for a partial list].

Access

People with AIDS and their advocates argue strenuously that a person with a serious illness has the right to make his or her own medical decisions with the advice of a physician. This right is only possible when access to treatment is assured. And when the vast majority of treatments for a disease are experimental, the issue is a critical concern.

Access to experimental drugs in clinical trials varies from drug to drug and is decided by a complex series of rituals involving FDA regulators, pharmaceutical companies, and AIDS activists. Some pharmaceutical companies have made impressive efforts to allow early access to unapproved drugs. Others have resisted access requests from advocates or provided only token programs.

Because research has moved so slowly in the U. S., the AIDS community has been forced to create an underground network that delivers experimental treatments to people willing to take a chance. Organizations like the People With AIDS Health Group in New York help people exercise their right to import drugs approved abroad but not licensed in the U. S. The FDA has adopted a policy that allows individuals to import as much as a three- month supply of an unapproved drug for personal use, with a doctor's prescription. Many safe and effective antibiotics available abroad, like clarithromycin and azithromycin, among others, have helped Americans with AIDS live longer, more comfortable lives. Unfortunately, this option is only possible for people who can raise large amounts of cash; these antibiotics can cost up to $25/day for maintenance therapy.

Alternative treatments that are not classified as drugs are often available over the counter. There is great debate between "consumer protectionists" who believe that the public must be shielded from unproven treatment and people who feel that the government should not intervene in private medical decisions.

It is difficult to reconcile these views. But the good intentions of both approaches are worth pursuing. Excessive regulation of safe potential therapies by the government is counterproductive. However, in an unregulated environment, fraud may flourish. When evidence exists that a substance is harmful to consumers, some regulation may be acceptable. There may also be a role for the government in mandating that evidence be provided to consumers when claims are made about the medical benefits of alternative treatments.

Conclusion

Ultimately, you are responsible for what you put in your body. You deserve the best information available about any treatment approved or experimental -- that you are considering. Take advantage of the rich sources of information the community is generating about treatments. Above all, as a safeguard, let your health care providers know about all the treatments you are taking.

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Copyright © 1991 - 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

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