HTLVIII Testing
Gary Feldman
Some comments on LAV/HTLV-III testing, research studies, and telling partners.
A few years ago I signed up for an AIDS research study being done by the
University of Pittsburgh, as part of a four city project funded by the National
Institutes of Health (the other cities are, to the best of my recollection,
Baltimore, Chicago, and San Francisco). The study started before HTLV-III
had even been identified, and thus part of the goal of the study was to track
the factors that may be involved in causing AIDS. I had no reservations about
joining, since I have a very strong belief in empirical research (I sign up for
human interface studies at every opportunity, and always used to participate in
psych experiments as an undergraduate).
Volunteers in the study came in twice a year to be interviewed on sexual
practices, undergo a physical, and give samples of blood (over a dozen vials at
a time; ouch), urine, semen (this was the fun part) and stool (blech! I can't
see myself ever getting into scat). I knew at the time that a portion of my
blood would be frozen, to undergo whatever testing might become available at a
future time. However, I hadn't really thought about the implications of a test
for a virus (or, as it turns out, antibodies to a virus), and I certainly hadn't
thought about many of the political and personal issues.
In retrospect, the only surprise was that the virus and tests were discovered so
quickly; I would have signed up for the study even after LAV/HTLV-III had been
identified. Why? Because we still don't know why only a small percentage of
infected people actually come down with AIDS, and hence this sort of research is
very important.
I should also add that this particular study has been granted some sort of
insurance of confidentiality by the Feds. I'm not quite sure what this implies,
but presumably it means that their records are more protected than a county
HTLV-III testing program for example. On the other hand, this certificate was
given after I signed up for the study, so confidentiality obviously wasn't a
priority to me.
Once HTLV-III testing became available, the study did indeed retrieve the stored
blood, and start testing all of the participants. (Nothing underhanded; we knew
that the potential for this was there when we signed up, although I suspect most
volunteers, like myself, hadn't thought about it very much.) However, it was
entirely up to us as to whether we wanted to learn the results. One of the
requirements for getting your results was that you had to participate in a group
discussion session and an individual counseling session before any HTLV-III
results would be revealed. I think this was an excellent idea, far better than
the health department testing mills, even though I had to pull strings to bypass
this requirement (since I moved to New England before my results were
available).
As I just indicated, I decided to find out what my results were. Mostly this
was for my own peace of mind (although, if the tests had turned out positive, it
would have proved that the virus had a much longer incubation period that
previously suspected :-). But also it was to help me decide how to lead my
life. I think that if I had tested positive I would either a) decided to remain
celibate, which is close to what I've been doing anyway; b) limited my dating to
other men who tested positive, either through support groups or candid personal
ads; or c) limited my sexual activity to strictly safe, kinky stuff with little
or no chance of emotional attachments forming.
Which brings me to the last question, namely should a person who test positive
inform partners? My response, as indicated, is that I would choose to avoid
situations in which this was likely to become an issue. I could not see myself
dating someone while burdened by the constant anxiety of knowing that someday I
would have to reveal this information if the relationship is going to continue.
I know this is evasive to some extent, since avoiding such situations doesn't
insure that they won't occur. I can't honestly say what I would do if I were
in such a situation, although I like to think I would find the courage to be
honest from the start. I guess I'm lucky in knowing that I won't be in that
situation at all.
The other side of the coin is how would I feel if I were going with someone who
revealed to me that he tests positive. I have a close friend who is positive,
so I know I can be with someone who's positive without freaking out (which is
not to say I have no anxieties, but only that they're quite manageable). Thus,
if someone with whom I was forming an emotional attachment turned out to be
positive, I think I would be able to continue the relationship. I would
probably evaluate the relationship in the context of a sex life that would no
doubt have some restrictions, which could potentially be an issue. But I
learned a long time ago not to expect to have all my fantasies fulfilled.
(Reality is more than enough fun, anyway.)
Sorry for being so long winded.
Gary
Bear
> ...
> I think that if I had tested positive I would either a) decided to remain
> celibate, which is close to what I've been doing anyway; b) limited my dating to
> other men who tested positive, either through support groups or candid personal
> ads; or c) limited my sexual activity to strictly safe, kinky stuff with little
> or no chance of emotional attachments forming.
>
Choice b is not a wise choice unless they practice safe sex. The accepted
thinking is that the various mutations of HTLV-3 do not infect in quite
the same way and that a cross infection might be all you need to go
from non-symptomatic to symptomatic (ARC or AIDS).
--
Jerry Natowitz
ihnp4!houxm!hropus!jin (official)
ihnp4!opus!jin (temporary)
Institute for the Study of Non-existent Phenomena