Living with AIDS: the Lazarus syndrome

March 18, 1997|By Ellen Goodman

SAN FRANCISCO -- Eric Ciasullo runs through his schedule as if he were on a sight-seeing trip through the Land of Pharmacology. If it's 7 o'clock this must be Crixivan. If it's 8 o'clock it must be DDI. If it's 9: 30, it must be D4T, Diflucan, Acyclovir, Bactrim, Myambutol, Biaxin.

He opens the medicine chest in his apartment to show me shelves full of bottles. It is a daunting regimen of 19 pills -- some to be taken on an empty stomach, others on a full stomach, some with water -- that he must take every day, for the foreseeable future.

But for this engaging 34-year-old who lives in the Castro district, that is the good news: Mr. Ciasullo now has a foreseeable future.

It's been a full year since the FDA approved Crixivan, one of the drugs known as protease inhibitors, for AIDS treatment. In what has been coined ''the Lazarus Syndrome,'' hundreds of the ''terminally ill'' on a combination therapy have come back to life; men once gaunt and wasted are now seen working out at gyms all over town.

This city has been Ground Zero in the AIDS epidemic ever since the mysterious ''gay plague'' was first identified 16 years ago. But this morning's newspaper carries headlines that read ''World of Work Beckons AIDS Patients'' and ''How Wonder Drugs Give New Life.'' Here, where one in 25 is infected with HIV -- 42 percent of the gay community -- they are beginning to cope with the dimensions and the limits of something called hope.

For Eric Ciasullo and thousands like him, the change has been profound. ''At 27,'' when he tested positive for HIV, ''It was clear that I would die of AIDS and it would be sooner rather than later.''

At 30, struggling with fatigue, migraines and diarrhea, he left his work as director of a housing program for gay and homeless youth, believing that ''the best part of my life was behind me.'' That may be a cliche of turning 30 he says, but adds archly, ''I had some evidence.'' Mr. Ciasullo got his affairs in order, said a lot of goodbyes, found a home for his dog Zachary. But in August, he went on the new drugs. Today he can walk his dog around the block without being winded. He can concentrate through a meeting. And he is beginning to think, ''Maybe I can beat this thing.''

This ''maybe'' marks a new and distinct phase in the epidemic. As Pat Christen, the head of the San Francisco AIDS Foundation says, ''It is a genuinely heady, exciting time.'' But she cautions, ''It's also emotionally tumultuous when so many people are facing the same choices at the same time.''

The hugely expensive drugs come with nearly as many caveats as side effects. There are people sitting side by side in doctors' waiting rooms, some of whom will get better and some of whom will not. Furthermore, no one knows how long these brand-new drugs may work. Is this a cure or a remission?

There are other side effects to what Mr. Ciasullo describes as ''the long and slow transition from the land of the dead and dying to the land of the live and living.''

One piece of that transition is the desire to return to work. But what happens if you are on disability and leave it? Will you be able to return?

Till death shall you part

Another piece is the effect on relationships. In the gay community, I hear of many couples who expected to be together for the rest of their lives -- when their life expectancy was months. Now, like Mr. Ciasullo and his partner, they are asking, ''Is this the person I want to spend the next 20 or 30 years with?''

For the community at large, the drugs may actually mean a greater demand on services for people living with AIDS. The cost of these drugs -- as much as $17,000 a year -- may strain the public health-care budgets. Questions about who gets the regimen may stretch the limits of bioethics.

And underlying all this news is a rumble of anecdotes told by AIDS workers worried about a possible rise in infection rates. Will a belief that the new protease inhibitors can ''cure'' AIDS, or prevent HIV in a ''morning after'' cocktail, lead to an outbreak of risky behavior?

San Francisco has been ahead of the curve of this epidemic in every phase. Now the city is facing issues that the rest of the country and 223,000 Americans with AIDS will face.

At the Stop AIDS Project, Dan Wohlfeiler says that his mother remembers when the polio epidemic came to an end. ''Bells were ringing out across America. We want to hear those bells. They aren't chiming yet.''

No, but in the heart of the Castro district, Eric Ciasullo says with meaning, ''I am making a five-year plan.'' That has a nice hopeful ring.

Ellen Goodman is a syndicated columnist.

Pub Date: 3/18/97

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