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