By Jesse Marx
By Chris Parker
By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
In fact, given the unprecedented quickness with which they passed through a newly streamlined FDA approval process, protease inhibitors probably pose more unanswered questions than any other class of drugs currently on the market. Brandt and other activists recall that the approval of AZT created a similar outpouring of hope in the AIDS world, which was soon tempered by the rapid appearance of resistant viruses. Protease inhibitors have already proven to be stronger and more impervious to resistant viruses than AZT, but nobody expects them to permanently banish such a resourceful disease as AIDS. For even the most successful patients using protease inhibitors then, the question becomes how long and how well they can continue to live.
"We're still on a steep learning curve," Henry says, noting that while great scientific advances have been made in the ability to measure the amount of t-cells and levels of virus that exist in the blood and tissue, much less is known about the capacity of the immune system to regenerate itself. Protease inhibitors clearly help to boost t-cells and diminish viral loads, but that may not be enough to stem the onset of resistant viruses if a person's immune system has been so battered by previous infections that it can't effectively regenerate its defenses.
For Bill Kinkler, whose medical history was untroubled enough that he didn't even know he had HIV until January, and whose astounding comeback affords him great psychological momentum, optimism about the future is relatively easy to come by. For others, however, who have ridden the horrific physical and psychological roller coaster of AIDS for many years, attitudes toward life, death, and the promise of protease inhibitors are much more nuanced and fraught with ambiguity.
The somber strains of Henryk Gorecki's Symphony No. 4 will be playing as mourners file in to pay their last respects to the body of Greg Johnson. Then, after the prayers and the eulogies, there'll be a rendition of an old tune from the Mississippi delta, "TB Blues," an eerily familiar recounting of another plague from another era. After that, "I don't know," says Johnson. "I want the next song to be more uplifting. My partner, for his first song, he chose 'Swing Low Sweet Chariot,' which is pretty traditional. But for his second song, he chose 'Rainbow Connection,' you know, from the Muppet movie? Which I thought was pretty cool, a very unconventional thing to sing at a funeral."
As a teenager growing up in Plymouth, Johnson would make occasional forays over to Lakewood Cemetery and indulge his fascination with death. "I would go take walks and think, 'Oh, look at these cool headstones,' and I'd start to wonder about what kind of marker I'd like to have. It was like these romantic fantasies about death. And then, you know, you read about the plague in Europe and look at all the artwork it inspired and it is very gothic. I found that very appealing." He emits a low, bone-dry chuckle. "But then, as you get closer to death, you start going, 'Oh, this really isn't so cool, is it?' The idea of dying at a young age just makes you think about all the things you won't get to do."
Sometimes Johnson has to improvise, like with the red Geo Sprint parked out back. All his life he had dreamed of owning a red sports car, and while the Geo is more of an ersatz roadster than the real deal, it was the best his budget would allow when he was in the market for a new vehicle nearly two years ago. "I bought it knowing it would be the last car I'd ever own," he says.
Six years ago, when Johnson was 27, Brent, his partner of two years, tested HIV-positive. Although the two had never practiced unsafe sex, Johnson quickly got tested and discovered that he too was HIV-positive. Since then he has suffered through three bouts of pneumocystis, a painfully debilitating lung infection that literally takes your breath away. The worst of it was in August 1995: Upon his release from the hospital, a nurse would come to Johnson's house every morning and give him medication through an intravenous line in his arm. His weight dropped to 117 pounds and he barely had enough energy to stand in the shower or to shave his face. "There were four stairs that led to the back door. I would try to plan everything so I only had to go up and down those stairs once a day, and after that I'd have to rest. I looked and felt like shit. I was doing IV infusions every day and taking, god, so many pills. And I thought, this is what it's like when you are almost dead. That's when I updated my will and started thinking about what my service should be like."
For a while, Johnson beat back the infection, but it reemerged with a vengeance in February, lasting until the middle of April. By then, his liver was so worn out from all the drugs he had been taking that he developed jaundice. At the same time, Brent's ongoing case of Kaposi's Sarcoma was diagnosed as terminal. Johnson himself required 14-16 hours of sleep, so a lot of Brent's care fell to his father, friends, and some medical personnel, who helped with the diaper changes, medications, and the rest. Brent died on Memorial Day, a few months shy of his eighth anniversary as Greg's partner.