With New Drugs, AIDS Patients Get Another Chance at Life
There was no doubt but that he’d die an early, ugly death. Chuck Johnson had come to accept that. He had AIDS, so he was going to die. It was that simple.
As a gay man living in San Francisco, Johnson had seen the disease kill hundreds of friends and acquaintances. A year ago, he watched it start to kill him.
An AIDS-related infection, his fifth in 18 months, sucked 30 pounds from Johnson’s body-builder physique. He was so nauseous he couldn’t eat, and a catheter in his arm provided his only nourishment. At age 37, he walked like an old man. He gave himself a year, at most, to live.
Then an amazing thing happened. Chuck Johnson got better.
Last Dec. 28--a date he remembers as if it were his birthday, for in a way it was--Johnson started taking Crixivan, one of a class of potent new AIDS-fighting drugs known as protease inhibitors.
By February, the AIDS virus had dropped to an undetectable level in his bloodstream. Today, there’s still no trace of the virus, and Johnson’s weight and health have returned. His once-pallid cheeks are rosy again, and gym-buffed biceps and pecs bulge once more beneath his T-shirt.
One recent morning, Johnson sat outside his apartment, trying to describe the ecstasy of a sunny day. “Just sitting on this deck and looking at the bay--it’s wonderful!” he said. “It’s incredible!”
Even more incredible: Researchers say Johnson’s turnaround is the rule, not the exception. For many, protease inhibitors appear to have transformed AIDS from a death sentence to a chronic, manageable disease.
The news has had a profound impact in San Francisco, ground zero of the AIDS epidemic. In a city where nearly half of all gay men are infected by the AIDS virus, 15 years of death and desperation have given way to hope and giddy relief.
“Before, if you were HIV-positive, the assumption was that you were going to die. It was just a matter of time,” Johnson said. “Now, the assumption has changed from death to life.”
A thousand cautions are in order. Protease inhibitors keep AIDS in check, but they don’t cure it. While the drugs control HIV in the bloodstream, the AIDS virus can linger in the brain and other tissue, and many wonder if the seemingly miraculous effects will wear off over time.
Also, protease inhibitors are of little help to some people at high risk of AIDS, such as crack addicts who can’t follow the strict pill-popping regimen required. And the expensive new drugs, covered in the United States by Medicaid and private health insurance, are beyond the reach of most of the world’s 22 million HIV-positive people.
Even among those taking the new drugs faithfully, about 10% don’t respond.
“I still have friends who are dying,” said Paul Wisotzky, an HIV-positive San Franciscan who’s had only moderate gains--and side effects including severe nausea and headaches--from taking Crixivan and another protease inhibitor called Saquinivir.
“I’ve been on this roller coaster for a long time,” Wisotzky said. “I’ve learned you have to modulate your hope.”
That said, spirits are riding higher than ever among those with HIV. More and better drugs are in the pipeline, and in San Francisco’s gay circles, parties are starting to outnumber funerals. Like bears emerging from hibernation, people who once lay dying in dark rooms are back on the streets.
“I see people I haven’t seen in years,” Johnson said. “I didn’t know they were alive.”
“There’s tremendous hope out there,” agreed Dr. James Dilley, a psychiatrist and director of the AIDS Health Project, which runs support groups for those with HIV.
But Dilley said there also are suspicions, in a community burned before by false hopes, that the good news might not last. And even support-group participants who share Lazarus-like tales find that once the euphoria subsides, they must grapple with issues long subjugated to their illness.
“They have to learn how to reinvest in their lives,” Dilley said.
Not to mention their bank accounts. Some with AIDS, aiming to make the most of what they assumed were their final months, cashed in life-insurance policies, drained savings and ran up large credit card bills.
“They threw caution to the wind,” Dilley said. “Now, they’re suddenly fearful they’re going to run out of money.”
Derek Gordon and his partner, Arturo Fernandez--both HIV-positive and responding well to protease inhibitors--are trying to reconcile the prospect of living rather than dying together.
“We never thought of ourselves growing old, having children, planning retirement, buying a home,” said Gordon, 33. “We never thought about money before. We just spent it. Now we’re fighting about money and saying, ‘Gosh, isn’t this great?’ ”
David Gooding, 47, feared in July that he wouldn’t live to see Christmas. Then he started on Crixivan. “Now, what I have to worry about is retirement,” he said.
A store manager before going on AIDS disability in 1992, Gooding wants to return to college and get certified to teach high school.
“I just couldn’t go back and work for the corporate world,” he said. “I feel as if I’ve been given a second chance.”
Johnson said his rapid recovery caught him emotionally unprepared. He had moved to a place where he was ready to die--and now he might live? He was angry for weeks.
More recently, he has found himself hurrying to make up for lost time.
“I’m very impatient these days,” Johnson said. “Every aspect of my life is subject to revaluation. If it doesn’t work, I don’t want it there.”
He and his partner are seeing a counselor, revisiting a relationship they both had assumed would end in the near future when one of them died.
No one would call Johnson cured. Still on AIDS disability, he tires easily, and his days revolve around his illness. His kitchen cabinet looks like a pharmacy, crowded with bottles of the 26 pills he takes daily to battle HIV and keep opportunistic infections at bay.
“It still lives with me,” he said. “It’s like having a stalker. If I turn the corner and look back, I get a glimpse of it, and I worry that it may still come up and hit me on the head.”
In some ways, AIDS will never leave Johnson.
For three years, he worked for Project Open Hand, delivering meals to shut-ins with AIDS. He remembers the stench of diarrhea and dirty clothes in cheap hotel rooms. He remembers the desperate faces of the dying: the hollow cheeks and thousand-mile stares of those consumed by an illness they were powerless to stop.
But if the wonder drugs cannot erase such images, they at least have added ones like this:
Johnson is at the gym. Rock music booms, punctuated by the clank of weights and exercise machines. Sweaty, muscled men and women stroll past. “Hi, Chuck,” they say. “Great to see you.”
Johnson lies on a weight bench, veins popping on his close-shaven head, arms straining against the barbells. He is no longer afraid to push himself, no longer afraid of breaking.
After years of preparing to die, Chuck Johnson is ready to live.
‘Before, if you were HIV-positive, the assumption was that you were going to die. It was just a matter of time. Now, the assumption has changed from death to life.’
Chuck Johnson
