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About Just out. (Portland, OR) 1983-2013 | View Entire Issue (Aug. 17, 1984)
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. W ! * I I I I I I I I I I I I 1 * ROSE WIND1 MINISTRIES Psychic Readings • aura • past life • relationships Psychic Development Classes Rev. Judith Dale 284-3910 10% discount on first reading with this ad. S 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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