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Gay Men's Health Crisis

Evaluating New or "Alternative" Treatments




 

GMHC Treatment Issues 1993/94 Winter; 7(11/12): 30

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; Project Inform. 415/558-9051 in California, 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. Individuals 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 tip-off 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; 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.

Interview 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? If the treatment has not been objectively evaluated (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. You deserve honest, direct answers to any questions you may have.

Beware of 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 a small fraction of drugs make it from the laboratory to the pharmacy.

Seek out a variety of opinions to reduce possible bias. Even community publications can have a very predictable editorial slant, calling their objectivity into question. Some receive funds from pharmaceutical companies that manufacture AIDS therapies. While there may be nothing wrong with this, particularly given the low level of funding of not for profit AIDS organizations, such financial support should be clearly identified. 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 "AIDS Treatment Resources" Treatment Issues, October 1993, for a partial list).

Let your health care provider know exactly what treatments you are taking. Whatever treatments you decide to use, make sure you inform your healthcare provider. Some therapies can have unique side effects which may be misdiagnosed if your health care provider does not about them. Additionally, some therapies may have harmful interactions with existing medications.

Copyright (c) 1993 - Gay Men's Health Crisis. All rights reserved. Noncommercial reproduction is encouraged.



 


Copyright © 1993 -Gay Men's Health Crisis, Publisher. All rights reserved to Gay Men's Health Crisis (GMHC) Treatment Issues. Reproduced with permission. Treatment Issues is published twelve times yearly by GMHC, INC. Noncommercial reproduction is encouraged. Subscription lists are kept confidential. GMHC Treatment Issues, The Tisch Building, 119 West 24th Street, New York, NY 10011 Email GMHC. Visit GMHC

Information in this article was accurate in December 1, 1993. 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.