Life with Guidelines
"Have you ever heard of AIDS?" Since it was March of 1982, I hadn't. But I was glad to have someone put a name to my chronic illness. I asked the intern in the emergency room what treatment he suggested, and he replied there was none. "Okay," I said "I'll find something on my own."
That was my first experience looking for a treatment recommendation for HIV, and I'm grateful for it now. It taught me never to take any "official word" as gospel, but to look for my own answers.
The first "official" recommendation for HIV treatment appeared in 1989 when the results of trial ACTG 019 were released. The pressure on anyone with fewer than 500 CD4 cells to start AZT became tremendous -- pressure not only from my doctor, but also from every nurse who took my temperature. "So are you on AZT?" "No, I don't feel it's appropriate for me yet." "I see -- and where did you get your medical degree?" And pressure from fellow activists, who were starting AZT as soon as they dropped below 500. Even greater was the pressure I put on myself. Though I was stable at 300 CD4s, I felt I had to do something. So I tried AL-721, oral alpha interferon, Chinese herbs -- even infusions of Compound Q at a guerilla clinic, an experiment that almost killed me.
I know now, from frozen blood, that my viral load at that time was 360 copies, so there was no need to be on antiretrovirals. But the experience taught me how powerful official treatment recommendations can be. Even though I was feeling fine, and my CD4 count was stable, I thought it was foolish to do nothing.
As time went on and my counts remained around 300, I began to feel that "magic numbers" like 500 weren't the answer. The trend over time seemed more important. In 1992, I lobbied unsuccessfully for New York State to put something like this in their guidelines. When the results of the Concord study showed that starting treatment below 500 didn't extend life, that information was inserted into the state guidelines.
When triple-combination therapy appeared in 1995, everyone (including my ex-doctors) told me I had been smart to avoid AZT monotherapy, but that now it really was time. "Hit Hard, Hit Early" was the mantra of the day. I couldn't find any clinical data showing that starting treatment when your CD4s were above 200 extended life, so I promised myself that I would start only if my count dropped below 200. In early 1996 it did, and I prepared to start a three-drug combination. While I hesitated, my count went back up to 300. I decided once again to wait, which is where I am now -- still waiting to start treatment.
Living with the rigid numbers of guidelines has been one of the hardest parts of having HIV. I felt vindicated when the new federal guidelines were released saying that waiting until CD4 counts drop below 350 is reasonable. And I tell myself that if mine drop below 200 or my viral load goes above 50,000 I'll start treatment. But to be honest, when it happens I tend to wait for the numbers to get better. Having waited almost 20 years, I have a somewhat higher psychological hurdle than most people, but I've always said I would start treatment when the time is right. I'll decide when the time is right using my own guidelines, not someone else's.
Mark Milano is a longtime AIDS treatment activist and educator.