The Columbia University/NIMH research study offered free and confidential HTLV-III testing to its participants, and then that became a new element of the interviews.
As one of the study’s field researchers, I was also given the courtesy of taking the test.
The study participants were each asked to come into the Columbia office to receive their test results. But John Martin, the study investigator, felt, since I was an AIDS “professional,” that I could handle the information over the phone. He called me to tell me while I was on my shift at the NYC DOH Hotline.
“I’m sure it’s not a shock to you, because of Hawaii and your lymph glands,” his soothing voice intoned. “You’ve tested positive for the antibody. I know you know what this means, and there’s no reason to panic. My main concern, though, is that your T4 cell count is very low, 217.”
“What does that mean?” I asked.
We at the Hotline evidently had not been abreast on the very up-to-the-minute medical technology.
“You’d better talk to your doctor about that,” came the reply.
There was a pause in the conversation.
I could imagine John on the other end of the phone, thinking about the hundreds of other men he would have to tell this information to, that day. I could also imagine him flashing back to the year before, and to the very hot and very safe and very inappropriate one night of sex he and I had the night following our champagne celebration of the first Columbia interview.
What I did not know at the time of this phone call was that John had probably also tested positive for the HTLV-III antibody.
“Are you okay?” he asked.
I could almost sense the phone wires humming. It felt as if there was a great distance between us, at the moment my life would change once again.
“Sure,” I answered stolidly, looking around the Hotline room. Could people tell? Had I changed in an instant? Was I now officially one of the “others.”
“I’m fine. Thanks for letting me know.”
“Call if you need me.”
I had prepared myself for the result, but the confirmation of it with the words, “You tested positive” was still a shock. But it was true; I was okay.
What I wasn’t prepared for was how low my T4 cells were: 217.
I confided in Rebecca, who was working the shift with me. I had become close friends with her and her partner, Lourdes, and I trusted them.
The idea of my fathering their child suddenly vanished before me. I wouldn’t be a father after all.
I asked Rebecca if she knew what the T4 counts signified.
“Let me call Lourdes,” she replied with a sympathetic timbre.
A few moments later, Rebecca relayed the information to me with a grim face.
“A normal T4 count is above 1,000. You should see your doctor.”
The virus was cleverly eating my healthy immune cells and had already done a lot of damage.
At the time, we were telling callers that it seemed that perhaps 10% of those who tested HTLV-III positive would go on to develop AIDS. The virus had only been identified two years before, so there was no way yet to determine the likelihood of disease progression.
I went into battle mode. I thought that if I took care of myself, took vitamins, did not do drugs, watched my drinking. and continued to have “safer sex,” then I would easily be part of the 90% of the those infected who did not eventually get AIDS.
As the months and the years progressed, however, it became clear that it was not ten percent of those who would become develop AIDS and eventually die of the disease. The percentage would be closer to 100%.
There was little to be done when I received the news in April, 1986. The announcement of AZT and the Time Magazine article were still five months in the future.
The only experimental treatments were being sold underground by the PWA Coalition. I tried what was available. Egg lipids, Naltrexone, AL-721: They had all shown some efficacy in slowing down the progression of HTLV-III in lab rats, but had little effect in preventing the virus from attaching itself to human cells.
We were grasping at straws. But if there is no flotation device available and a straw is thrown at you, you grab it. Humans, I have learned over and over through the years, have a tremendous capacity for survival.
As time progressed, so did my anxiety. I could be as cautious and holistic as possible, but would I still be one of those 10%? By all indications, I felt that it would be just a short period of time (a couple of years? Months? Weeks?) until I began to show the visible signs of illness. The KS lesions would appear. I would begin to lose weight. My cheeks would start to sink into my face. I would develop pneumonia.
I was twenty-eight years old. In just a few months, perhaps, I projected, I would no longer be desirable, acceptable. I would, in fact, become a pariah, a walking manifestation of the disease that was ravaging my insides. Who would want me? Who would desire me? Who would love me?
John Martin would die of AIDS-related causes, six years later, in January 1992, at the age of thirty-eight. Only one part of the study had been analyzed and published in medical journals. There was so much important clinical data that showed, for the first time, the impact of the epidemic on gay mens’ social and sexual behavior. Though Laura, his assistant, attempted to keep the study funded, at least for the collection of data, most of the study results—seven years of it—died along with him.
John was #49 on my list. By the time the transformative pharmaceutical “cocktail” was introduced in 1996, forty-four more of my friends and colleagues would succumb to the ravages of this unrelenting, and indiscriminate, virus.