HOPE WITH AN ASTERISK

By Richard Lacayo

People who have lived for a while with AIDS, or with any other life-threatening illness, will tell you what it does to their hearing. They put it in different ways, but what it comes down to is that the most ordinary conversation can cut like a knife. To begin with, the present tense has a whole new pitch. When you don't know how long you have, the simple words "I am" are enough to remind you of the unbearable lightness of being. With the past tense the problem is that you catch yourself saying, "I was..." and feel the tip of the wing of the angel of death. But the trickiest form of speech by far is the future. One of the first things lost to real illness isn't alertness or vigor. It's the simple pleasure of saying, in full confidence, "I will be."

When he tested positive for the AIDS virus, in 1984, Caleb Schwartz was 28. What that means is that for most of his adult life he has expected to die prematurely. A while ago, when he was looking for a new apartment in Manhattan, he would only consider elevator buildings. He was in good health at the time, but he had to keep in mind the day--in two years? in five?--when he would be too weak to climb stairs.

Year after year, Schwartz looked handsome and sturdy. All the while, his T cells ticked downward. In 1992, when they dipped below 500--the normal level is around 1,000--Schwartz's doctor put him on AZT, one of the few drugs then available that attack the virus directly. Both understood that it would fail after a while. Later Schwartz added 3TC, another antiviral. AIDS took a first cuff at him anyway. He began experiencing memory loss and having difficulty concentrating. Every few weeks, something that felt like the flu would send him to bed for days. In the summer of 1995 he took a disability leave from his New York law firm. A few months later he had his first AIDS-related hospitalization, for meningitis, a brain inflammation that gave him headaches so lacerating that even sunlight caused him pain.

By that time his T cells had dropped to 201. This is the stage at which AIDS starts to behave like an abusive mate. It simmers alongside you in bed. It sits quietly at your table. And from time to time it goes berserk, pushes you into a corner and makes a fist. "I was starting," says Schwartz, "to accept the possibility of something catastrophic."

What he got was something else. In March, his doctor put him on a third drug, Crixivan, one of the new protease inhibitors. Up to this point, Schwartz's story had been like most in the epidemic, none of them very encouraging. But 1996 reinvented the genre and put at its center the AIDS patient who bounces back on the three-drug cocktail. Over the past year--like a character plucked from a drama and dropped into what, exactly?-- Schwartz moved from one story to the other. His T cells are back above 500. His viral load, meaning the presence of the HIV virus in his blood, has dropped to--the magic words--undetectable levels.

After years of coming to terms with the prospect of death, Schwartz is mulling over the prospect of life. For his own peace of mind, he's being very, very careful. The drugs may not work forever. Or the side effects may worsen. Sometimes you still hear HIV-positive people refer to themselves as carriers. But the virus is only one of the things they carry. Along with it comes a weight of isolation, fears for the future and deep accumulations of rage, humiliation and grief. After all of that, naive hope is one indignity they are in no hurry to accept. So Schwartz is not about to start throwing around the future tense. "Everything is still phrased in the conditional for me," he says. "It's just that the conditions are more positive."

In the history of the epidemic, there has never been a moment as intricate as this one. AIDS once again, as in the first years after it appeared, presents a predicament so new that no one is sure how to talk about it. When we say protease inhibitors work, what do we mean? Whom do they work for, how well and for how long? The only thing we know with certainty is that the conventions of language and sentiment that fit an earlier moment of AIDS, meaning all the years when death was at the end of every struggle, are unsuited to this one, when nothing is a foregone conclusion. Something powerful is happening. The new prospects for effective treatment insist that despair is an outmoded psychological reflex. Yet among people who live with AIDS, optimism is a suspicious character. Too many bright hopes of the past didn't pan out. So this is a moment in which, for anyone with feeling and judgment, feeling and judgment are unsettled.

To begin with, buying time isn't cheap. It's the ultimate seller's market. For his three-drug combination therapy, Schwartz pays $11,280 annually, plus about $4,000 in test fees and doctor's office visits. Schwartz has insurance to cover most of the expense. But only 20% of the 1 million Americans who carry the virus are so lucky. Taking the new drugs properly--three times a day, with no food for one hour before or two hours afterward--also requires discipline. Patients who neglect the regimen risk developing drug-resistant strains of the virus. The side effects can be murderous. Even when the new drugs work, the quality of life they provide can be so-so. "Roughly every 10 days I sleep all day," says Schwartz. "I get up, take my pills and go back to bed."

Above all, for a lot of people the wonder drugs don't work any wonders. Estimates of how many patients show no improvement or can't tolerate the side effects vary from 15% to about 33%. For them, the promising developments all around only threaten to deepen their isolation. They worry about being left behind, artifacts of an earlier stage of the epidemic. "I've taken them all, and I've failed them all," says Ron Wilmot, 46, a Vietnam veteran whose weakened condition led him two years ago to sell his half of a San Francisco real estate firm.

"These new treatments are like hope with an asterisk," says R. Scott Hitt, chairman of the White House Council on AIDS. Yet the signs of something changing are everywhere. In California, Sherman Oaks Hospital has shut down its AIDS unit, which used to hold 40 or more patients. In some recent months, the patient population dropped to three. In Los Angeles the AIDS Healthcare Foundation closed one of its three hospices. "This is the most important year in the history of the AIDS epidemic," says the foundation's president, Michael Weinstein. "For the first time, we made more progress than the virus did."

There are worse problems than hope. For years, in any of the mostly gay neighborhoods around the U.S., it was common to run across old friends turned stick figures, men carved to the bone by illness. Thirty-year-olds studied the writings of Elizabeth Kubler-Ross, the psychologist who identified the stages in which the dying accept their fate and dryly marked their own progress, good schoolboys acing their last assignment. And everyone had a story about ashes. You heard about Dale, whose ashes blew back into everyone's face because the wind was coming ashore that day on the Long Island beach. You heard about Ron, whose ashes were piled in a mound on another beach so the tide would take them out. But the tide never came in that far, so they were still there the next morning for kids to make into sand castles. You heard about Jack, whose ashes were supposed to be scattered across a lake in Ohio. But on the day his friends and family assembled, none of them could bring himself or herself to do it.

However provisionally, the culture of gloom is lifting. People are trying out the words "I will be,"arguably the most complicated phrase in the English language. In the U.S., insurance companies and Social Security pay more than $1.5 billion in disability benefits each year to about 100,000 AIDS patients. But newly revived patients are now thinking about giving up disability and returning to work. Before they can do that, there are questions. Federal disabilities law bars discrimination against people with AIDS, but how many employers will hire an applicant with an expensive health problem? And if the benefits of protease inhibitors turn out to be short-lived, how easy will it be for people with AIDS to resume disability?

People who work with the epidemic fear that upbeat news coverage is playing havoc with a decade of AIDS education. Doctors complain about patients who think that because their viral load is undetectable, the virus must be gone from their bodies. Wrong. AIDS counselors talk about teens who think that science has discovered a morning-after pill to undo last night's unsafe doings. It hasn't. And everybody is concerned that a false message will go out that AIDS has been defeated. With that, they figure, will come a return to the '70s, the whole goatish and unbuckled funfest. The cycle of infection will go wild again.

Even before the appearance of protease inhibitors, there were signs that younger people were shrugging off the danger of AIDS. On average, half of new HIV infections in the U.S. occur in people under the age of 25, according to the Centers for Disease Control and Prevention. Doctors talk about a rising incidence of HIV-positive teenage girls, who get the virus from infected men. They talk about a "second wave" among younger gay men. For those over, say, 35, tending to a sick friend or being tended has been a nearly universal experience. For those in their 20s, it's a rarity. When the epidemic becomes unreal, the libido is unbolted. Jason is a 19-year-old Los Angeles sales clerk who learned that he was infected at 16. There were AIDS education programs at his high school, but the message never hit home. "You're young, you think you're invincible," he says. "And then--wham! Reality gets you."

For many of the poor--about half of AIDS patients qualify for Medicaid--protease inhibitors are somebody else's miracle. All 50 states have ADAPS, AIDS drug-assistance programs, which are partly funded by Washington. But in 28 states they won't cover protease inhibitors. The rest face a funding crisis as requests for the drugs flood in. Some states have waiting lists. Others, including Indiana and Missouri, are organizing lotteries to determine which patients will get the treatments. "AIDS will be a two-world disease," predicts Gary Cohan, a Los Angeles AIDS specialist. "The wealthy vs. the indigent."

To the despair of parents, the new drugs are being denied for now to most HIV-positive children, because testing for pediatric use is incomplete. The drug companies that conduct the tests have been slow to move. Properly so, insist the companies, saying it was prudent to experiment first on adults. Their critics believe the industry neglects pediatric AIDS because children under 12 are a small market in all senses. Since 1981, only 7,200 have been diagnosed as having AIDS.

In the pediatric trials so far, the news is promising. Many children are rebounding. But conducting those tests is complicated, since most protease inhibitors are available only as capsules, not in liquid form, which is more suitable for kids. At St. Jude Children's Research Hospital in Memphis, Tennessee, researchers open the capsules and mix the bitter medicine with food. "This is not the best way to do it," says Dr. Walter Hughes, who heads the AIDS clinical-trial unit. "But if you have a child who is going to die in six months, you take those chances."

Some drug companies are finally seeking approval from the Food and Drug Administration for a protease inhibitor suitable for children. Meanwhile, desperate parents have embarked on risky trials of their own. Juan Carlos--he doesn't want his last name used--is a Colombian who lives in Miami. Though HIV positive, he's in good health. His five-year-old daughter, who also carries the virus, is not. Three months ago, she lay helpless in a local hospital. In just two weeks her weight dropped from 32 to 22 lbs. Even so, her father could not find a doctor who would risk giving her the new drugs. "They kept telling me, 'No, there are no data for children.' I said, 'Listen, if I don't get this medicine, I'm going to lose her.'"

Juan Carlos was ready to have the protease inhibitors prescribed for himself so that he could secretly pass them along to his daughter. Last year he used the same scheme to get her the AIDS drug 3TC. Eventually, he found a doctor willing to give him the drugs for his daughter but on his own legal responsibility. In effect, she is a one-girl test group. "I said, 'She has to get on a special trial. Her trial. My trial,'" says Juan Carlos.

Even as some people struggle to get the drugs, others throw them away. With further breakthroughs reportedly on the way, there are AIDS patients concerned that today's medications will somehow make their bodies less responsive to better ones tomorrow. "There are 18 new treatments in the pipeline," says Teresa Nieves, 30, an AIDS patient in Brooklyn, New York, who wouldn't take the three-drug cocktail her doctor prescribed. "What I fear is that using this concoction will disqualify me for more promising ones."

That's a risky decision, since researchers want patients to start protease inhibitors as soon as possible after they become infected, before the immune system is too weakened to rebound. But they also acknowledge that the people who appear to be responding best to the new drugs are those who never used earlier ones. "Knowing that, where do you put your marbles?" asks Stephen Follansbee, medical director of the HIV Institute at Davies Medical Center in San Francisco. "It's tough, because no one's got a crystal ball."

Anybody who had one might have gone through the past few years differently. AIDS encouraged a lot of clean living. People started to take their health seriously. There were vows of chastity, some of them kept. Among gays, the epidemic also helped forge a solidarity, with implications that have only just begun to work their way through the larger culture.

But a good many people found a way to go through life with one foot in the grave, one flooring the accelerator. They let their drinking get out of hand, figuring their T cells would wear out before their livers. They indulged big-ticket impulses. Frequent-flyer miles were accumulated in all directions. Some spent their way into debt simply because their condition required it. But a return to life means a return to life's responsibilities. "A lot of people I know are facing troubles because they spent their credit-card money to the hilt, mortgaged their homes," says Dr. Jerome Goldstein, a San Francisco physician. "They have all these bills, and are wondering how the hell they're going to pay them."

If protease inhibitors give rise to a small social revolution, they will also produce an upheaval in purely personal relations. For instance, AIDS opened a quiet split between positive and negative men, within which the new drugs may add another fine fracture. "In the past, HIV-negative guys didn't want to date positive guys," says Jim Brudner, an AIDS activist in New York. "Now positive guys with 500 T cells don't want to date guys with fewer. Everybody is terrified of becoming a caretaker for a partner who gets sick."

There are HIV-positive men who talk about having put their feelings on hold from the day they first tested positive. Some even hid behind the virus as a lethal scare tactic, a way to fend off attachments with friends and family that they weren't sure they could handle. (One more paradox of the epidemic: even the Jolly Roger can be a flag of convenience.) Now they realize they may have to go back into the world and forge the kind of attachments that get you through a lifetime.

But all those are the problems of people who have begun to imagine that they may have the time to work them out. For healthy people, the future is elastic; it stretches before them to whatever length their peace of mind requires. In 1996 a lot of people with AIDS began to find some flexibility in their own dealings with time. "I don't think about the future past a manageable point," insists Caleb Schwartz. "I stopped doing that the day I got the news I was positive." But ask him bluntly whether he expects to be alive a few years from now. The answer he gives may be the same one he would have offered before the new drugs came into the picture. But now you hear it differently. So does he. What he says is, "I will be."

--With reporting by Dan Cray/Los Angeles, Tammerlin Drummond/Miami and Victoria Rainert/New York

With reporting by DAN CRAY/LOS ANGELES, TAMMERLIN DRUMMOND/MIAMI AND VICTORIA RAINERT/NEW YORK