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A WORLD TURNED UPSIDE DOWN : With Promising New Drugs, Are HIV Patients Ready for Life?


On a recent Monday night at the Ron Stone HIV Center in West Hollywood, Michael Monroe is leading a class in rebirthing, sponsored by Being Alive, a support agency run by and for people with the virus. "Rebirthing" is a breathing technique that is said to help dislodge emotional blocks and ease coping with stress and fears--one of the myriad alternative therapies the HIV community assimilated during the decade when no medication worked.

The session opens with a share of issues, and Monroe asks to go first. Tall and strikingly handsome at 52, he spends 12 hours a day attached to an intravenous feed to keep his weight up. And like growing numbers of people with AIDS, he has begun taking a new and much-publicized type of drug called a protease inhibitor.

"I realized this week that I have been prepared to die, but I'm not prepared to live," he says. "I know it may sound crazy."

But it doesn't sound crazy. Not to his students. And not to the thousands who have put affairs in order, written wills, bought cemetery plots, said their goodbyes, sold life insurance policies, maxed out credit cards, given up jobs, gone on disability--only to find themselves getting better, thanks to these new drugs.

"I took liberties with my credit cards," says Bill, a budding country singer who is realizing he might actually have a life, not to mention a career. "I was thinking, 'So what if a dead man has bad credit?' "

Michael Gottlieb is the Los Angeles physician and immunologist who in 1981 first identified a new syndrome striking gay men that later was named AIDS. He now sees dramatic changes in his patients. Those with advanced cases are "living very normal lives, feeling much better and with energy and joie de vivre that they have not had in years."

Referring to the drugs' ability to reduce the level of detectable HIV in his patients' blood, he says: "We are not eradicating it, but we are putting it into remission--which may be all a person needs."

The so-called protease inhibitors--all approved by the FDA only in the last year--include saquinavir (Invirase), ritonavir (Norvir) and indinavir (Crixivan).

"Practicing [medicine] in this protease era is a much more positive feeling between doctor and patient," Gottlieb says. "Patients are feeling better and more optimistic, more hopeful, less despair."

Still, doctors, counselors and people with AIDS say, the drug's remarkable and much-publicized life-prolonging benefits have provoked unexpected soul-searching among patients who had pretty much given up on life. And then there is the frustration, coming to light very recently, that the drugs, for all their wonders, don't appear to work for everyone. In short, the drugs have shaken expectations and caused psychological trauma that is only just beginning to unfold.

"People are stunned. There are enormous social and economic issues going on," says Jackie Black, psychologist and facilitator of a drop-in bereavement group sponsored by Being Alive, a support agency run by people with HIV. "They lost careers, don't have savings, lost social networks. Now they're looking at growing old alone, the terror of loneliness."

Monroe's future is filled with new fears and changed priorities.

"If I were to live, what on Earth would I do? I would have to have a source of income. But even if I could do what I did before, I wouldn't want that. My work would have to have meaning. How would I . . . prepare for a life that goes on another 20 years? It feels like starting from square one."

But Monroe's symptoms have not improved since he began the combination therapies seven weeks ago. Which raises another issue rippling through the HIV population: Whereas caregivers say most of those on protease inhibitors are improving dramatically, a few are not responding, or cannot tolerate the drugs, or cannot adhere to the strict regimen of some 20 to 30 pills required per day, at precise times.

"There is a subgroup for whom the new medications don't work or they work for a short time," says Dr. Scott Hitt, who heads the Presidential Advisory Council on HIV / AIDS. "And if the virus is not completely suppressed, resistance will build up to all the drugs they're taking."

And the social and psychological fallout is just beginning to be felt.

"It's a painful issue. There's a lot of self-blame, self-reproach, that they can't use the medications," says Adam Chidekel, a clinical psychologist and executive director of the Pacific Center, a network of 400 volunteer therapists who counsel people with HIV without charge. "They feel for some reason it's their fault."

Explains Monroe: "There's this voice inside saying, 'Am I undermining my own success? Is it me?' "

Like many HIV community leaders, Chidekel sees a developing schism.

"There is going to be a group of those responding to medications, with increased hope as well as existential anxiety, with additional years and the question, 'What do I do?' And a group who are not responding, where a sense of hopelessness and frustration will increase."

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