I N
O n e m an's
e x p e rie n ce with
controversial HTLV3
by Bob Andrews
In the very near future, gay men who either
consider themselves at “ high-risk" for AIDS
or who have actual concerns regarding their
health will be able to take a simple test which
will determine if they have been exposed to
HTLV3. This retrovirus is now being con
sidered as the most likely cause of AIDS.
Other than that (which is still speculative)
little more is known about HTLV3 or what a
positive test really means.
Since June of 1983,1 have been a volun
teer in a study at Mass. General Hospital. This
research, similar to many other studies being
conducted in other institutions, is a two-year
longitudinal study of self-identified “ high-
risk” men who are asymptomatic of illness.
The purpose is to establish a base-line over a
period of time and to carefully monitor any
changes in the individuals. Controls include
individuals with AIDS and individuals not in a
"high-risk" group (presumably hetero
sexual). Every three months I have an exam
and give specimens (blood, urine and
semen) that undergo a battery of tests.
Like many who volunteered for this study, I
was prim arily motivated by anxiety. My health
was good, but I reaized that my sexual history
paralleled that of many of the men who had
been diagnosed with AIDS. As a participant in
the study I would be assured immediate
medical attention should I begin to develop
any symptoms. I am also hypochondriacal
enough to imagine every cold or lump to be
the beginning of the w orst I wanted reassur
ance that I was okay.
Initially my results were unremarkable. The
doctors conducting the study and the nurse
assisting them assured me with their sensitiv
ity and gave adequate tim e to answer my
questions. After the initial battery of tests I did
feel relieved. I also felt positive about my con
tribution to this im portant research. In Sep
tember I was informed that there had been
some changes; my T cell subsets “ had fallen
somewhat" Again, the doctor was reassur
ing. Hardly alarmed, he felt this was probably
a result of the flu I had just recovered from.
The good news was that my lymphocyte
count was not decreased. Just to be safe, we
repeated the test three weeks later. Again the
results were abnormal. But otherwise I
remained asymptomatic — great appetite,
no weight loss or night sweats. So I was once
again reassured and told it is not uncommon
for someone to have abnormal T-cell ratios. I
was beginning to have my doubts.
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I G H T
I was also becoming acutely aware of my
responsibility to others, especially the men I
was intimate with. My doctors assured me
that it was safe for me to remain sexual as
long as I took certain precautions. I had de
veloped a "safe-sex" lifstyie (no fucking, no
exchange of fluids, no drugs) and followed
their advice.
The third battery of tests followed the same
pattern of abnormalities with a new develop
m ent my "blastogenesis and cytology" was
"slightly diminished." Again the doctors wer
reassuring but I was beginning to feel less
confident Over the next few months I de
veloped a persistent low-grade fever and had
two incidents of night sweats. I also thought I
detected a slight swelling in the lymph
glands under my arms and in my groin. We
waited until the fever had gone down before
repeating my next tests. By this time, Dr. Gal
lo's research had been announced and a
screening for HTLV3 was available. “ Did I
want to be screened?” Yes!” “Why?" I’m not
certain except that I was anxious and I hoped
the results would be negative.
On May 31 the results arnved from Dr. Gal
lo’s lab. I was one of the first to discover that I
was positive for HTLV3 antibody. I was tested
back to June of 1983 with the same results.
Suddenly we were discussing my diagnosis
of ARC and the treatment options available to
me. I had a positive culture for CMV in both
my urine and my saliva; we needed to repeat
these two tests, but I could begin Interferon
treatment if I chose. This was not a decision I
had to make just then, and it was not even
something I had to seriously consider at that
time, but I should think about it I was too
numb to think about anything. There was a
point where I stopped listening and felt as
though I was merely observing. I didn’t want
to show my fear, so I refrained from asking
any questions. I felt a need to reassure them
at this po in t "Yes, I understand"; "I’m not
really surprised"; “ I’ll be in touch." Suddenly
my life made a quantum change. Just as
"com ing out” twenty years ago changed my
self-perception and gave me new options,
being labeled ARC changed me. The issue of
com ing out all over again brought back
much of the old anxiety. Who do I tell, how do
I present it what exactly do I say, how will my
friends react?
I relate all this because we, as a commun
ity, are being encouraged to take part in re
search which may prove beneficial in the fu
ture, but which offers very little to those of us
who volunteer as subjects. I have serious
concerns about the interpretations of
the test results. I am especially concerned
about the government’s interest in this parti
cular area of research (screening as opposed
to treatment). It has been reported that the
Pentagon’s germ-warfare lab at Ft. Detrick,
MD will be developing diagnostic tests for
persons suspected of having AIDS. It is
doubtful they have our best interests in mind.
Confidentiality has been assured by our
doctors and I trust their sincerity. But how
many physicians are willing to face a jail sen
tence if records are subpoenaed? Do MGH
and the Department of Public Health have the
same moral integrity as the Fenway?
There are also concerns that the screening
m ight become mandatory for certain types of
employment and for insurance. We don’t
know what the results mean, or what the
incident of HTLV3 is in the general popula
tion. However, the assumption is being made
that gay men with a positive antibody are
ARC. This is a bit premature. In my case,
other factors may make that an appropriate
diagnosis; but what of men who are asymp
tom atic yet test positive?
Since my diagnosis, I have developed
other “ symptoms." I’ve had short spells of
headaches, low-grade fever, malaise, depres
sion and loss of appetite. One evening I was
dining with a friend, a man with AIDS, and we
were discussing my test results and treat
ment. I passed out! I don’t see myself as some
one taken by hysteria, but I think that evening
I scared myself and hyperventilated. I realized
that I was assuming the role of a sick person,
that I was suddenly developing all the symp
tom s I associated with the disease.
I am fortunate that my doctors have re
mained open to my increased demands on
their time. I question whether they are pre
pared to deal with the anxiety of 50 more
individuals like me, men who aren’t really sick
but need constant reassurance and monitor
ing. Recently, I’ve found myself actually pull
ing away from my doctors and feeling angry
at them. I know they can’t provide me with the
reassurance I want and I associate them with
my diagnosis. Irrational, I reaize, but true.
I also feel fortunate that my network of
friends includes the members of the AIDS
Action Committee. Through them I have
found support and awareness that won’t be
available to many of the people who are
screened for HTLV3. We, the committee, will
be available for advice and support and we
will coordinate our efforts with medical pro
viders. There is concern, however, that
increased numbers of anxious men suddenly
aware of their exposure to HTLV3 will tax all
our resources.
Throughout the AIDS crisis, the lesbian
and gay community has cooperated with the
medical/scientific community. We have
opened up about our sexual lives and en
trusted our health to them. And we have done
this with an incredible amount of trust We
have to maintain that trust if we are sincere in
our demand that a cure for AIDS be discov
ered. However, it is now time for us to assume
a more assertive role in their research. At this
most sensitive level of research, we need
guarantees that our rights will be protected.
We need assurances that confidentiality is
maintained. We need to witness an equal (if
not greater) emphasis on developing a cure
as there is in culling out the exposed.
My reaction to the results of my screening
is that I have not been given any information
that helps me personally. The direct impact
is, in fact just the opposite. Because I now
know that I have been exposed (even though
having antibodies may prove to be the best
possible result) I have a sense of doom. I take
the same precautions to protect others as I
did prior to my diagnosis. I don’t take the best
care of myself, however, and I feel more
stressed. No one else should be subjected to
this increased anxiety until more substantial
inform ation is known about HTLV3 . The psks
are just too great My advise to any friends
who ask is that they should not participate in
this study at this time. Continue to take care
of yourselves, learn about safe sex, and see a
physician you know and trust if you have any
question regarding your health. HTLV3 has
been identified. Now let them cure it!
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