My Sordid Antiviral Past
In retrospect, I probably started AZT too early, although I have survived when many people I knew with higher T-cell counts back then are gone. Who knows why? From 1985 to 1988, I had a pretty severe case of what used to be called ARC (AIDS-Related Complex) -- swollen glands, night sweats, shingles, etc. In 1988, AZT had just received FDA approval, but since the pivotal trial was done in persons with AIDS (or more precisely, men who had already had PCP pneumonia), it was not approved for people with HIV who didn't have AIDS, and I didn't have insurance anyway. So I entered a clinical trial (ACTG 016), which was comparing AZT to placebo in people with ARC.
I entered the trial to get AZT. I am almost ashamed to say it now, but if I had been given the placebo, I would have gotten the AZT some other way. The trial was supposed to be blinded: neither the researchers nor the patients were supposed to know who was getting AZT or the placebo. That was wishful thinking with an experienced substance abuser like me. I checked out the AZT as though I was testing coke. I put my study med and AZT side by side on a piece of aluminum foil and heated it with a lighter. While pharmaceutical companies have gotten pretty good at making "taste-alike" placebos, these tend to melt at lower or higher temperatures than "the real thing," to smell different when they burn, and to leave different-appearing residue. My study medication melted at the same instant as the real AZT and gave off the same foul smell. I had the real stuff. I hereby apologize to my research colleagues, in advance, for disseminating this easy method of unblinding.
Back then, my strong conviction was that HIV's reverse transcriptase enzyme could only endure so many mutations before it became ineffective. So as soon as the ddI expanded access program opened up in 1989, I added ddI to my AZT. There was a thriving "gray market" in "alternative treatments" back then. Now that we have effective antiviral therapy, that seems to have waned greatly. But isoprinosine, ribavirin, Dextran Sulfate, Peptide-T, AL-721 and others were big sellers back then. As soon as ddC was proven safe in humans in 1990, it appeared on the gray market in an "underground" version available through activists.
Since then, I have never been on less than three drugs, and sometimes four. Sadly, we have learned that reverse transcriptase has an unbelievable amount of flex, so my theory that HIV couldn't reproduce in the face of multiple mutations didn't pan out. But my T-cells were 6 in 1991, and I'm still here. My T-cells have never been much above 200 since then, generally below, but I am here and relatively healthy. I have no regrets, but I wonder what would have happened if I had started antiviral treatment later.
When I gave presentations in my professional role as a statistician, it was uncomfortable to say that combination treatment was unproven, since I was using it. But it seemed to be working for me. Was it genetics, combination treatment, or a weak strain of virus? I'll never know. But I suspect 15 years of almost perfect adherence did the trick. I missed three days for the first time last year -- within a month, I had my first detectable viral load in years, and my T-cells fell to half of what they were. So I probably did the right thing starting treatment so many years ago.
Carlton Hogan works for the Statistical and Data Management Center of the Community Programs for Clinical Programs on AIDS (CPCRA), and is active in the Coalition for Salvage Therapy and the AIDS Treatment Activist Coalition.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.