WHAT, I'M GONNA LIVE?

By Christine Gorman

Two months ago, Puck was dying of AIDS. The 34-year-old San Francisco hairdresser (who doesn't use a last name) had made a will and signed over his power of attorney, and was searching for a way to pay what he thought would be his final nursing bills. Today, however, he's talking about going into business for himself and opening up an individual retirement account. "I'm even thinking of buying a house with a 30-year mortgage," he says. "What a concept!"

What happened? Like those of thousands of AIDS patients, Puck's prospects have been dramatically changed by a new class of drugs called protease inhibitors. Used with a "cocktail" of older antiviral medications, the new drugs have demonstrated that AIDS can be held at bay--at least for a while. Puck began his treatment in August, and his symptoms have already gone into remission. The hope is that AIDS will eventually be transformed into a manageable, chronic disease like diabetes. No one knows yet how long the protease-inhibitor reprieve will last, but its effects have already been far-reaching:

--Doctors at some large urban hospitals estimate that AIDS admissions are down as much as 60%. A few private practices dedicated to AIDS treatment have actually laid off workers.

--At least one of the "viatical" companies that purchase the life-insurance policies of AIDS patients at a discount--thus providing the dying with a ready source of cash--has closed down its operations. When protease inhibitors were introduced, the actuarial odds changed overnight.

--Some AIDS activists are taking a well-deserved break from fighting the epidemic and instead are going on vacation, learning a hobby or making new friends.

But with the good news comes the bad. The new drugs, it turns out, don't work for everyone. "At least 15% of patients don't respond," says Dr. Howard Grossman, whose New York City practice is largely devoted to treating AIDS. "That's the saddest thing. They watch other people get better. They have high hopes, and then nothing happens."

In addition, too many patients who could benefit from the cocktail treatments aren't getting them. The drugs are expensive (annual cost: $12,000 to $20,000) and in short supply. That puts them out of reach for millions of people in the developing world, as well as for large numbers of underinsured patients in the industrial world. Tens of thousands of Americans are scrambling to pay for the drugs any way they can--through private insurance policies, Medicaid payments, sometimes even Visa and MasterCard. One resourceful patient in Georgia collected drugs from the leftover supplies of deceased friends.

Dennis DeLeon, 48, of New York City, is one of the lucky ones; his insurance company covers protease-inhibitor treatment. But he's not quite sure what to do with his newfound life. "I ran up all these charges on credit cards thinking that I would not be around to pay them," he says. Not only does he now have to figure out how to retire his debt, but he and his life partner have to readjust to the idea that they may grow old together. "You feel dazed being back in society again," he says. "People don't know what you've been through."

Or what you still have to go through to keep the disease in check. Patients on combination therapy often have to swallow 20 to 50 pills a day. Since some of the drugs have to be taken on an empty stomach and others with food, it can be difficult to stick to the prescribed regimen. Yet if patients skip even a single dose, the small amounts of HIV that remain in their bodies can become resistant and spread anew. Most suffer side effects in the first few months that include severe diarrhea, muscle spasms and anemia.

Vaughn Pinkett, 33, of Miami, learned firsthand just how debilitating some of the side effects can be. He was riding a bus two weeks after starting the cocktail therapy when his legs began to twitch violently. "I felt like I was plugged into an electrical socket," Pinkett recalls. "It was like someone had two knobs--one heat, one vibration--and they just kept turning up the volume." After a few minutes, he regained control of his legs. Fortunately, the spasms haven't returned, and Pinkett, whose treatment is paid for by Medicaid, has regained both his energy and his appetite.

Patients who aren't covered face a tougher challenge. More than 40 million Americans are uninsured, and some who are insured aren't adequately covered. Some HMOs, for example, consider the cocktail therapy too expensive to offer their clients. To fill at least part of the gap, Congress in 1990 created the AIDS Drug Assistance Program (ADAP). Each state administers its portion of the $165 million budget as it sees fit, however. States like New York and California, which supplement the federal money with state funds, are among the most generous, covering more than 50 different medications. Georgia, by contrast, makes just five different drugs available, and only one of them is a protease inhibitor.

Some individual cases are so desperate that the pharmaceutical companies have decided to help out. Last summer New Jersey-based Merck announced that it would make its protease inhibitor, indinavir, available free to 4,100 people who couldn't otherwise afford it. Other firms have pledged to continue treatment for those patients who participated in their clinical trials.

These programs are about to be put to the test, however. Many AIDS patients had become so used to the idea that antiviral treatments don't work that they didn't bother to apply for assistance. But as word of the effectiveness of the new drugs spreads, the current clamor for protease inhibitors is likely to become a roar. Already, the Washington, D.C., ADAP has begun turning down requests for new prescriptions. The increased demand on ADAP funding is expected to cause an estimated $100 million shortfall by March of next year.

Then what happens? Cutting off treatment for patients taking the multidrug regimes would be a tragedy, and not just for the individual patients. Suddenly freed from that chemical barrage, the HIV in their bodies could easily become resistant to one or more drugs. If these patients infect anyone else before they die, an entirely new superstrain of HIV could be unleashed on the world--precipitating another and even more frightening public health crisis.

No one can afford to relax his guard on AIDS. Still, it's a relief to most patients, and to their physicians, just to have a future to worry about. "We have been burned so many times that most doctors didn't want to be optimistic," says New York City's Grossman. Even if the improvements generated by the new drugs turn out to be short-lived, he and other clinicians now have reason to believe they will one day win the war on AIDS. "The fact that we can do it once," he says, "means that we can do it again."

--Reported by William Dowell and Alice Park/New York and Tammerlin Drummond/Miami Beach, with other bureaus

With reporting by WILLIAM DOWELL AND ALICE PARK/NEW YORK AND TAMMERLIN DRUMMOND/MIAMI BEACH, WITH OTHER BUREAUS