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.”

The new medications are also provoking rage and depression among those, including the bereaved, for whom the therapies arrived too late.

Says Black: “There is a new level of rage. Anger is one of the normal states of grieving, but this is different.”

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The metamorphosis is affecting not only the infected, but the full range of service and support networks.

Pacific Oaks Medical Group, the nation’s largest private practice specializing in AIDS, has closed its San Fernando Valley office.

“In the last six months, there has been a dramatic change in the patients,” says Hitt, one of the physician-partners of Pacific Oaks. “We have gone from seeing many patients on a monthly basis dealing with recurring illness, to seeing patients every few months to monitor their compliance with the medications and monitor their viral loads and T-cell counts.”

Adds Gottlieb: “I’m not interrupted every 15 minutes by a call from the hospital asking me to react to a critical condition. But ironically the practice has also become more labor intensive because of the need to sit with patients and explain the evolving options.”

The Sherman Oaks Hospital AIDS Unit also has closed. “Between 1985 and 1990, we were full, at times with overflow . . . as many as 40 AIDS patients,” says spokeswoman Denise O’Neil. Now, “It does not make sense to keep an entire unit of the hospital for an average daily census of two or three AIDS patients.”

Midway Hospital’s Immune Suppression AIDS Unit, the largest in California, has seen its census decline by 60%. “I got a call from a mortuary,” says unit manager Bill Mannion. “They wanted to know if we were upset with them, because they weren’t getting referrals. I said, ‘No, they’re healthy!’ But I need to add that they said, ‘That’s great.’ ”

The Chris Brownlie House hospice--run by the AIDS Healthcare Foundation, the largest exclusively HIV / AIDS medical provider in the U.S.--also has closed. “We have seen the demand for hospice care decline quite radically since the beginning of the year,” says foundation director Michael Weinstein. “Fewer people are reaching the end stage of the disease.”

AIDS Project Los Angeles, too, is being forced to reevaluate its purpose and its direction.

“Previously, when we thought of services for our clients, we thought of health or medical kinds of services, support groups about dying matters, wills, those kinds of things,” says Ervin Munro. “Now we think in terms of socialization and recreational activities, retaining employment or returning to the work force. So the shift is to developing services around their wellness rather than around their illness.”

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Ultimately, the most critical issue is affordability and access to the medicines, which can cost $15,000 a year or more.

“Who are we going to choose to live and who are we going to let die? That’s not a choice we should have to make,” says Mark Senak, director of policy and planning at APLA, the second-largest AIDS support agency in the U.S. with 6,000 clients. “The medical developments are wonderful. It should be our greatest joy. But the medical delivery system is simply not ready for the shift from a model based on mortality to a model based on maintenance. There is potential for disaster unfolding within a disaster.”

“We are going to have to fight to ensure that people with HIV have access to these drugs,” says Weinstein, whose organization has been at the forefront of providing care to those who cannot afford it. “While we are having great results from those on medications, we have a big job to reach those who aren’t and making sure they have access. Treatment equals life.”

Gottlieb, who admits he initially resisted optimism about another drug, now says, “I am very optimistic. Earlier-stage patients with preserved immune functions will live much longer and with a superior quality of life. Just how long is a question mark, but it could be 10, 20, 30 years for some patients.”

Says Hitt: “No one can call HIV an inevitably fatal disease anymore. That’s a pretty dramatic shift.”