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AIDS FOCUS
Experimental AIDS Drugs: Should You Take Them and When?
Part 1 of a 2-part series
Most physicians and researchers I know
now recommend that all gay men who have
not been in 100% monogamous relationships
for the past 6 to 10 years be tested
anonymously for exposure to Hiy. They
further recommend that individuals be
counseled both before and after testing, so
that persons understand the issues involved
with cither a negative or positive antibody
status. As Atlanta physician Dr. James
Braude said at an HIV symposium earlier
this year, "If you're HIV positive, face if
Medically, it makes perfect sense."
Medical advances in the past few years
make dealing with HIV a more complicated
process. One of the hard truths researchers
have handed us is that probably over half of
all persons exposed to HIV will develop
AIDS or ARC 5 to 7 years after exposure.
These same researchers also suggest that the
The decision of when to act -
when to begin a high or low dose
of any experimental drug for
HIV-varies from person to
person, and from doctor to doctor.
percentage of persons who go on to develop
AIDS or ARC past this marker probably
continues to increase with lime.
Add to this conclusion the fact that a
person can appear perfectly healthy on the
outside but have a deteriorating immune
system on the inside. It is no longer
uncommon for physicians to report that
seemingly healthy individuals have
undergone T-ccll counts only to discover
their immune systems are seriously
compromised.
But even before reaching a point of
diminished immune function, individuals
who are HIV positive are increasingly
interested in learning what they can do for
themselves in terms of "early intervention"
against HIV. Along the spectrum of HIV
infection from HIV positive but
asymptomatic to full AIDS, individuals arc
asking researchers and personal physicians
what their options arc in dealing with HIV.
People say, "I'm HIV positive but
asymptomatic (or have lymphadenapthy) and
my T-cells are 800. What should I do?" The
question can stay basically the same but
change the T-cell figure to 500 or 300 or 100,
and persons still look to their physicians for a
definitive answer. "What should I do in
terms of an experimental dmg and when
should I do it?" they ask.
Another truth is that your doctor really
cannot say for certain just what you should
do. Whatever you decide, including doing
nothing, involves risks. Studies are currently
underway to determine whether or not certain
drugs, most notably AZT and Ampligcn at
varying doses, can halt or slow the effects of
HIV on the immune system.
Time is of the essence
But time is precious. If you're monitoring
your T-cells and see over time that they arc
steadily falling, a wait and see altitude can be
psychologically as well as physiologically
costly. You want answers now. In response
to this need, groups have foimcd across the
nation that publish newsletters and supply up-
to-the-minute information on the latest in
experimental treatments for HIV.
The decision of when to act - when to
begin a high or low dose of AZT or any
experimental drug for HIV - varies from
person to person, and from doctor to doctor.
(I've also noticed a tendency among persons
and physicians in New York City and San
Francisco, where AIDS has hit hardest and
for the longest time in this country, to be
more open in considering some form of
alternative treatment at an earlier stage of
infection).
In Atlanta, physicians I have spoken with
sometimes suggest to their patients that they
consider some form of drug therapy at T-cell
counts ranging up to 500. Others adopt a
wait and see attitude and prescribe nothing
for persons with T-cells above 300. And one
Atlanta physician tells me that he doesn't
recommend AZT to any of his patients,
including those with AIDS, unless they
specifically ask for it.
Such variations among our medical
community account for the reason HIV
positive persons need to stay current on the
different approaches to treatment Long-term
AIDS survivors say to me that persons should
choose a physician with whom they can work
toward wellness, and whose beliefs on how
this can be achieved complement their own,
but who are flexible enough to consider
alternatives if necessary.
A thoughtful article titled "Whether to
Take Experimental Drugs: Counseling
Issues," has been published in FOCUS-A
Guide to AIDS Research (a publication of
The AIDS Health Project University of
California San Francisco and the Department
of Public Health). Southern Voice is offering
a limited number of reprints of this article to
persons sending in a self-addressed stamped
"Shame or the lack of love is the cause of
AIDS, not anything else. It doesn't have anything
to do with being gay, it has to do with love of self
from the drug abuser right on through. If you
can't look yourself in the face in the morning and
love yourself enthusiastically, then you are in dis
ease."
So says Atlanta counselor, teacher and author
Gary Bonnelle. Bonnelle earned his Masters in
psychology from San Jose State University in
California and for fifteen years commanded a
corporate career in art direction and marketing.
Now an emerging leader in Atlanta's New Age
Community as an instructor in "spiritual flight"—a
technique akin to deep meditation and to the
well-documented phenomenon of Near Death
Experiences-Bonnelle belies the image of the
sweet sappy guru. Unafraid to speak his mind,
Bonnelle has definite and controversial ideas
envelope to P.O. Box 54719, Atlanta, GA
30307. The article can be viewed as a primer
to persons interested in discussing
experimental drugs with their physicians. As
always, no one should ever take any dmg
without first consulting and being monitored
by their physician.
T-celLs
Many persons decide whether or not to
take AZT or other experimental drugs on the
Because we are all
individuals and there are so
many variables
involved...we shouldn't
necessarially buy into
...statistics. Neither should
we ignore them.
basis of T-ccll counts. A suppressed T-ccll
count docs not automatically mean one will
develop AIDS. But T-ccll counts can be a
valuable tool in monitoring one's
immunological status and in deciding when
to begin a dmg therapy.
An article published this year in the
British Medical Journal reported the results
of a 3-year follow-up of a San Francisco
General Hospital study of persons positive
for HIV. In San Francisco, 78% of HIV
positive gay men with less than 200 T-cells
per microliter of blood developed AIDS
within 3 years. Thirty-five percent of persons
with 200-400 T-cells, and 12% with more
than 400 T-cells at the start of the study,
developed AIDS during that same period of
time.
Because we are all individuals and there
are so many variables involved (such as the
lifestyles of the persons studied, including
nutrition, exercise, rest, stress management,
intake of alcohol and/or drugs, etc., and other
details which could affect the course of HIV),
we shouldn't necessarily buy into such
statistics. Neither should we ignore them.
The following is an extremely partial list
of some experimental AIDS drugs currently
in use in this country. Up-to-date information
on these and the myriad of other drugs can be
obtained from groups such as Project Inform
in California and the Gay Men's Health Crisis
in New York City. Southern Voice neither
advocates nor endorses these drugs.
AZT (Retrovir)
Perhaps the most intensely studied of all
AIDS drugs, AZT is one about which much
more needs to be learned. Though some
about the origins of illness and its antidotes.
"We all seem to want the world to love us and
will do anything for that, including hiding out,
putting on masks so that we can't be discovered,"
Bonnelle contends. "I think one of the things the
ADS virus is doing is playing with the body
physiologically because the body is weakened not
only by drugs and alcohol but by the shame, the
ideas of self that aren't quite right or complete.
Most of the men that I've talked to who have
ADS in their candidness will say, I have never
felt OK about me, I’ve always held in the back
somewhere an idea that I wasn’t right or that my
sexuality or being wasn't accepted by my family,
by friends and by other gays. I haven't found a
place for myself to express freely, openly,
lovingly."
"Look at the lifestyles the needle user has,"
Cont'd Page 13
long-term AIDS survivors w ill not take it,
AZT has proved to prolong the lives of some
persons with AIDS. Studies arc now
underway to determine the effectiveness of
AZT at various doses (thus minimizing
toxicity, such as anemias requiring blood
transfusions) and in combination with
acyclovir (zovirax). Disgracefully, there are
no current studies combining AZT with oilier
drugs, such as Ampligcn, Dcxtran sulfate or
Imulhiol, to determine synergy.
A study published in Lancet (Feb. 20,
1988) reported dial a lower, less frequent
dose of AZT reduced the amount of HIV
antigen in blood samples taken from 17 of 18
HIV posidvc individuals. And an article in
Annals of Internal Medicine (April 1988)
suggests that die and-herpes drug acyclovir
potendates the andviral aedvily of AZT. The
hope is that AZT can be prescribed at a lower
dose in combination with acyclovir and sdll
achieve clinical benefits. Many physicians
already routinely follow this protocol.
Researchers hope to soon leum die benefits of
various doses of AZT as an early intervention
treatment against HIV in persons at earlier
stages of infccdon. Available by prcscripdon
and extremely expensive (shop around for the
best price).
Ribavirin
Two studies in the last year showed
reduced HIV andgen levels in the presence of
Ribavirin. Less toxic than AZT, there is
renewed interest in studying Ribavirin.
Available over the counter in Mexico and
expensive. Persons taking Ribavirin, or any
drug, should be monitored by their physician.
AL 721
This drug is widely used by persons at all
points on the spectrum of HIV infccdon,
especially in New York and San Francisco.
It is postulated that AL 721 might interfere
with HIV's ability to attach, penetrate and
infect cells. The drug has reportedly been
approved for sale in health food stores, but is
uncertain when or if AL 721 will actually be
sold in this manner. Some researchers have
caudoned that AL 721 might have a rebound
effect, causing a disproportionate number of
persons with ARC who suddenly discontinue
the drug to develop AIDS. This has not been
proved, but should be taken into
considcradon in discussions with your
physician.
-Terry Francis
See Southern Voice, v. 1, iss. 10for the
continuation of Terry Francis' in-depth look.
"Living With AIDS", which
normally appears on the AIDS
Focus Page, will continue in
future issues. Submissions to
"Living With AIDS" are
welcome from PWAs,
PWARCs, health professionals
and others affected by the
AIDS crisis.
Submissions should be no more
than 400 words in length, and
typed or legibly printed.
Mail submissions to:
Southern Voice
P.O.Box 54719
Atlanta, Ga 30308.
New Age Leader Puts the Blame on Shame
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