After a ten-year lapse, the San Francisco Public Health Department called me at the beginning of the month. It seems they had again gotten funding to continue studying the Hepatitis-B Cohort, of which I am a member, and they wanted me to drop by for a visit. I of course agreed, as I have a long history as a lab rat.
It all started one day in the spring of 1978 when I was at the VD clinic checking into a public health issue. While waiting, I noticed a poster soliciting volunteers for a study testing a vaccine being developed for Hepatitis-B, which was then rampant in the kind of person who tended to visit the VD clinic. So I volunteered, and they took my blood and a sexual history and said they’d be contacting me. Some weeks later, they got back to me and told me that I had had Hepatitis-B at some point in my life without knowing about it. (Apparently this is not all that unusual.) They also said that I was now immune to the disease but not a carrier, so they needed no further participation from me. Then they went ahead and developed the vaccine.
By 1984 the AIDS epidemic was nearing full blast in San Francisco, and my friends and acquaintances were being picked off by an invisible sniper. You wouldn’t see them for a while and then you’d be at the grocery store and there would be this gaunt creature covered with Kaposi’s Sarcoma lesions who knew you. Or maybe worse yet, you wouldn’t see them for a while and you’d call up and get this unfamiliar voice saying, “Oh, he died last month. You didn’t know?”
But in 1984 a brilliant man at the Public Health clinic made a quantum leap and realized that they still had frozen blood samples from those 6000 members of the Hepatitis-B cohort, and we were the kind of guys who would make an ideal study group in the attempt to understand AIDS. They were able to find living over a thousand of us. So they took our blood and told us we’d have the opportunity to learn whether we were seropositive for the HIV virus. Like many of the cohort, I decided that I’d prefer to continue to act as if I were positive while still clinging to hope that I was negative. After all, in 1984 the medical treatment of AIDS was entirely palliative.
The situation changed, though, in February of 1987 when Allen woke up one morning terribly ill and a bit crazy. When i got him to the hospital, the diagnosis was Pneumocystis pneumonia plus toxoplasmosis affecting the brain. I checked immediately to determine my HIV status and when I discovered that my blood from 1984 had been positive, I rushed out and bought a pack of cigarettes, since it was clear that I’d be dead of AIDS in a couple of years or so. Allen died six months later, and for the next year I went into a frenzy of activity to keep myself sane (OK, from getting crazier). One of these activities was responding to Dr. Marcus Conant’s call for study group volunteers.
I landed in the thymopentin study. Thymopentin is a naturally occurring hormone that functions as an immunomodulator. Dr. Conant hoped that by injecting themselves with an artificially produced version of this hormone, HIV+ persons could slow the progression of the disease. But how much of the drug and how often? I was initially in the 1cc. per week group on, as it turned out, the placebo, but after a time there was some weak statistical evidence that three times a week on the actual drug might be doing some good. So for several years there I gave myself a subcutaneous injection of thymopentin three times a week. (You try giving yourself a subcue when your body fat percentage is approaching zero! Real narrow target.) In about 1992, they determined that these injections were totally harmless, but also totally useless, and the study was ended.
They transferred me into Dr. Conant’s plasma study. The idea behind this study was that HIV+ persons with good numbers (in those days before viral load could be measured, this meant mainly high T-cell counts) could spare some plasma periodically and that this plasma, just loaded with anti-HIV factors known and unknown, could be of great benefit to persons with outright AIDS, perhaps prolonging their lives.
What they didn’t tell me before I agreed to join the study was how the plasma was collected. The best thing I can say about this is that the machine was fascinating in its operation and that the built-in couch was fairly comfortable.
On the downside was the Needle, down the barrel of which you could look as you wondered whether there was a vein in your entire body that the damn thing could fit into. The tekkie managed to get it into a vein on the second try, and then I discovered the other downside. This was not like a quick blood draw. Rather, the machine first let the blood flow out of your arm through an elaborate tangle of clear plastic tubing into a holding vessel. When the vessel was full, the plasma was centrifuged out into a plastic bag rather like a typical IV bag. Then the leftover red blood cells in the holding vessel were pumped back into your body, and the cycle was repeated until the plasma bag was full. This took what seemed like hours but was usually something like forty-five minutes…at best a very uncomfortable forty-five minutes. I quickly grew to dread my scheduled visits, and several times my dread was reinforced by their missing the vein or by the needle requiring adjustments at points during the process.
But I persevered, partly out of just not wanting to be a quitter, but also because before he died Allen had turned to me one day and said, “If they ever offer you a blood transfusion, take it!” He said that it made him feel so good that he almost felt normal…for a while, anyhow. So I knew that my plasma at the very least would make the recipient temporarily feel good. It was also clear that receiving a bag full of plasma would be much less traumatic than giving one.
Then one day while I was squirming there on the extraction couch feeling sorry for myself, an Emaciated Wretch, obviously one of the recipients, walked in to talk with the tekkie. He stood there, right beside me, chatting away while taking little quick glances at my blood running through the clear tubing, splashing into the extraction chamber for centrifuging, and the clear plasma pouring into the holding bag. A sense swept me that something was different. Something was somehow wrong with his body language.
And then I realized that although for several years a lot of people, men and women, had been drawing my blood for various AIDS tests in the most professional manner, courteous and steady of hand and using the latest safety measures against accidental sticks, here for once was someone who wasn’t the least bit afraid of it.
On the contrary. He wasn’t exactly licking his lips, but it was clear that he would have been quite happy for the plasma to have been run right straight into his arm, while it was still hot and fresh.