December #42 : A Bite of the Apple - by Mark Schoofs

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December 1998

A Bite of the Apple

by Mark Schoofs

A Norvir nip gives our intrepid reporter new motivation for staying negative

I’m no stranger to medicine. Before my lover died in 1991, his AZT timer woke us up every night. Reporting on AIDS for 10-plus years, I’ve heard many PWAs describe the side effects inflicted by their drugs. And I myself contracted tuberculosis, requiring daily antibiotics for two years. One pill gave my skin an orange tinge, like a Chernobyl tan. So I’d figured that even though I’m HIV negative, I know what it’s like to be on HAART.

Wrong. This humbling truth hit home recently when I tried a nip of Norvir (ritonavir). I know, I know—why would anyone without HIV ever get near that drug, renowned for causing vomiting that outdoes the special effects in The Exorcist, not to mention other gastrointestinal disturbances such as, to use the clinical term, explosive diarrhea? I was writing a story for The Journal of the International Association of Physicians in AIDS Care about the production snafu that forced Abbott Labs to temporarily stop producing ritonavir capsules. The only available form of the drug would soon be the liquid, which my sources described as “vile,” “ghastly” and “like liqueur laced with motor oil.” So I had what I call my Dustin Hoffman moment.

Remember that scene in Marathon Man where Hoffman’s character is tortured by the sadistic Nazi dentist, played by Laurence Olivier? Well, Hoffman, according to Hollywood lore, stayed up for two nights to look as haggard as possible for the camera. Upon hearing this, Olivier exclaimed, “My God, man, why don’t you just act?” As the ritonavir flowed onto my tongue, my common sense made a belated entrance, shouting, “Why don’t you just report?” But it was too late.

I didn’t finish even one teaspoonful. Mixing it with chocolate milk, as Abbott recommends, didn’t mask the taste but merely fouled the milk. Two hours later, the taste was still present, making me feel as if I’d eaten something unwholesome, like a slightly rotten egg. The idea of quaffing this oily orange syrup twice a day for months was more than daunting. It was depressing.

As I sat there, feeling just less than queasy, I considered the greatest dilemma in HIV care today: when to start therapy. At the extremes—under 200 CD4 cells or during acute infection—it’s a pretty clear call. But the vast majority of HIVers are in the murky middle. What should they do? What would I do?

I’m no closer to an answer—there is no sure answer—but I now figure a new dimension into the equation: These medicines could drain off a lot of what I cherish most about life—simply feeling healthy.

This sensation is slippery: We usually conceptualize it as the absence of pain or sickness, but health can be felt in the peacefulness of sipping steaming tea before the workday begins, or the exaltation of a smooth and limber stride during a run, or the total absorption in a book or movie, each possible only because the body is not intruding with some ache or unpleasantness. Health, in short, is the background that enables “quality of life.” And ritonavir, with its lingering vile taste and stomach-churning effects, couldn’t help but deplete this sensation.

Of course, this is not necessarily a reason to delay antiretrovirals. The  odds of keeping the virus undetectable might be better before the CD4 count hits a critical low. Then, too, there are other, much more bearable medicines. Finally, if a drug’s side effects aren’t too painful, attitude can prevent them from spoiling life. My friend David has been on four drugs, including ritonavir and saquinavir, for more than a year. He just laughs off the occasional dash for the toilet.

Still, if I felt healthy, would I start ingesting chemicals that made me feel sick on the educated gamble that doing so was better than waiting? I just don’t know.

But I do know that my taste of ritonavir gave me a new appreciation of what activist Mark Harrington calls “the nightmare of lifelong adherence.” And it gave me a new reason for staying uninfected. Yes, I’m still frightened of sickness and death. But while this might sound bizarre, I’m more frightened of the joy-sapping grind of doctor visits, blood tests and vile chemicals. Those medicines are rightly called miracle drugs for extending my friends’ lives, but I still don’t ever want to take them.




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