Starting over with AIDS Drug therapies offer the sudden challenge of beginning life anew

THE BALTIMORE SUN

Fifteen years into an epidemic that has brought death and despair to millions, the statement can finally be made: People with AIDS are getting better.

New drug combinations that were made available on a wide scale less than a year ago are bringing an eerie sense of hope to some patients who only recently were planning their funerals and cashing in life insurance.

They are gaining energy and weight. They are spending less time in bed. Some have even checked out of hospice programs. Measures of health like "viral load" and T-cell counts are, for once, moving in the right direction.

"I noticed the changes right away," said Dean Gawlas of Bel Air, a 41-year-old man who started taking the new drugs last spring. "Suddenly I had energy. The depression started to disappear. You don't think as much about suicide or death."

But this success is a decidedly mixed one.

Today, as people observe World AIDS Day with candlelight vigils and religious services, six people are becoming infected with the human immunodeficiency virus every minute, according to the World Health Organization. Internationally, an estimated 6.4 million people have died.

In the Third World, where the disease is spreading most rapidly, costly drugs are beyond the consciousness of people who may struggle to find adequate food or shelter. Even in this country, where a half-million people have been diagnosed with acquired immune deficiency syndrome since 1981, the new drug therapy is not for everyone.

"We've been seeing patients who have literally come back from the jaws of death," said Dr. Joel Gallant, an AIDS specialist with the Johns Hopkins Medical Institutions. "But these drugs are really separating even more our patients into two groups -- those who can pay and those who cannot. Those who can take them and those who can't."

Not everyone has the money, insurance or aid to cover $12,000 or more in annual medication expenses. Not everyone is sufficiently motivated to abide by complicated dosing schedules. And some cannot tolerate the side effects, which can be harsh.

These forces have made the drugs an unrealistic option for many drug addicts and homeless people -- even for professionals who lack the drive to take potentially dozens of pills at staggered intervals throughout the day.

Suddenly starting over

And for many people who are reaping the benefits, renewed health has its unexpected downside: the sudden panic that comes from getting a life back after spending months or years counting on nothing but death.

Many patients quit their jobs, sold their homes, ran up debt and gave away possessions. Some, like Gawlas, planned their funerals and wakes -- right down to the Psalms, wine and food. Now they must plan their lives, not knowing if recovery will be prolonged or short-lived.

"Certainly, there's a sense of exhilaration," said Dr. David Haltiwanger, a psychologist who counsels people with AIDS at the Chase-Brexton Clinic in Baltimore. "But it's amazing how fast the other side sets in. A person doesn't adjust to bad news overnight. You don't feel like you have to adjust to good news overnight either."

The drugs creating the excitement -- and frustration -- are protease inhibitors. Although they were previously given to select patients enrolled in clinical trials, physicians started to prescribe them aggressively earlier this year when the U.S. Food and Drug Administration approved them for commercial sales.

Patients usually take a protease inhibitor in a "cocktail" with two older drugs from the category that includes AZT. Such cocktails are designed to outfox the AIDS virus, which has shown a maddening ability to develop resistance to whatever drug is employed against it.

Combination therapy

Combination therapy, which has been used effectively against tuberculosis, follows a simple logic. If the pathogen becomes resistant to one drug in the cocktail, it is likely to succumb to the others. Doctors can keep the virus on the run by making substitutions over a patient's lifetime, taking one drug out of the mix and employing a new one that had been kept in reserve.

Gawlas, diagnosed with AIDS in 1993, spent the first three years of his disease in single-drug therapy, switching from one anti-viral to another in search of one with lasting effect. Each suppressed the virus for a short time only.

Although he never contracted one of the deadly infections that prey upon people with AIDS, he shed more than 40 pounds and could barely muster the energy to get out of bed. He had lost nearly all his T-cells, components of the immune system that play an essential role in warding off infection.

Gawlas had quit his job as a kitchen and bathroom designer with Hechinger's. He was too sick to work and became convinced he would be completely bedridden by Christmas and dead within a year. During the worst times, he said, his thoughts turned frequently to suicide -- not just the concept, the grisly details as well.

In April, his doctors at Hopkins put him on a protease inhibitor along with AZT and 3TC, two of the more conventional anti-virals. In five days, the benefits were rapidly taking hold; in five weeks, they were startling.

Along with his newfound energy, he began to gain weight. Soon, he was searching his closet for clothes that fit his widening girth. His cheeks acquired a pinkish glow, projecting health and vitality.

Gawlas, who once worked as a medical technician in cardiology and nuclear medicine, plans to enroll in a graduate program that will qualify him as a nurse practitioner or physician assistant. In so doing, he will use his recovery to help others in need.

With a future to consider, he speaks of jubilation -- and fear.

"First you lose everything, then you have to get it back," said Gawlas. "What you had before you don't have anymore. You have to go find it."

He had cashed in half his life insurance and acquired debts, say- ing today that his credit "looks like a trash can." Having quit his job, he wonders whether he can take the gamble of returning to work -- surrendering the government disability income that he struggled for more than a year to get.

If he takes the risk and the drugs lose their effect, he will again be without income.

Such is the uncertain life of an AIDS patient who is seeing good things happen.

"If I make it, I make it," Gawlas said. "If I don't then at least I gave it the college try."

Myra Hill, 45, has organized her life around her drugs. Besides her triple-drug cocktail to fight the AIDS virus, she takes several other drugs to control infections, depression, insomnia and the effects of early menopause that she says was brought on by AIDS.

She takes a dozen different drugs throughout the day, each on its own schedule. Some must be taken with food, some without. So complicated is her dosing schedule that she carries a pill container with a programmable alarm that sounds every hour or two.

Last summer, she toured Disney World with her sister and two nieces, an insulated bag slung over her shoulder to chill a protease inhibitor that must be refrigerated at all times.

"I had to get everybody on my schedule," she said. "At times, it's a little depressing. It can make me feel like an invalid, which I don't want to think of myself as."

Nonetheless, the drugs have brought newfound optimism and a dramatic drop in her viral load, the concentration of virus in the bloodstream. She recently left her job as a state caseworker for AIDS-afflicted families ("I buried five others and three children from my caseload"), but today volunteers for an assortment of organizations that help people with AIDS.

"I've found some hope that this medicine is buying me a little time," she said. "That does a lot to make me not so damned depressed."

Hill knows that anything less than an obsessive desire to take these drugs on schedule can render them useless, so strong is HIV's tendency to evolve mutant strains that can poke through a breach created by human error.

"I'm very conservative about what I believe," said Dr. Carla Alexander, a physician with the Chase-Brexton Clinic, where Hill is something of a model patient.

"I have patients who feel incredibly well, and those people are golden. But a lot of people can't take these drugs. It's very unrealistic for physicians and virologists to believe that people can take medications like a machine."

All told, Hill's drugs cost more than $20,000 a year. Part of the cost is covered by her private insurance, the rest by a state drug-assistance program for people with AIDS who have slightly too much money to qualify for Medicaid.

Although Maryland has one of the nation's most generous drug assistance programs, many are left out. Among them are people whose income is too high to qualify for the drug program but whose private insurance has a $4,000 or $5,000 cap on medications.

Stephanie Silver, a social worker with a University of Maryland AIDS clinic, said one of her clients with limited insurance didn't qualify for the state's drug assistance program until he separated from his wife. Financial strain may have partly accounted for the marriage's undoing -- but so did the realization that he would qualify as a single person.

Protease inhibitors are enabling many people to return to work, but some hesitate because they will lose their state coverage. Weighing heavily on their decision is the knowledge that, from a medical standpoint, they cannot afford to interrupt therapy.

"You want to encourage people to work, but what effect will that have on their ability to take these drugs?" Silver said. "What kind of a message is that?"

For a list of World AIDS Day activities in the region, call Sundial at 783-1800, ext. 6120.

AIDS cases

Maryland's Center for AIDS Epidemiology has released statistics the number of AIDS cases diagnosed in Maryland and its subdivisions from January 1981 through Sept. 30, 1996. The U.S. Centers for Disease Control has released national data through June 1996.

................................. Alive ..... Dead ..... Total

Maryland Total .................. 6,370 ..... 8,586 .... 14,956

Baltimore City .................. 3,217 ..... 4,486 .... 7,703

Anne Arundel .................... 196 ....... 281 ...... 477

Baltimore ....................... 363 ....... 598 ...... 961

Carroll ......................... 18 ........ 35 ....... 53

Harford ......................... 73 ........ 98 ....... 171

Howard .......................... 72 ........ 103 ...... 175

Queen Anne's .................... 15 ........ 18 ....... 33

Metro Baltimore Total ........... 3,954 ..... 5,619 .... 9,573

Washington ...................... 3,927 ..... 5,193 .... 9,120

Maryland suburbs ................ 1,697 ..... 2,372 .... 4,069

Virginia suburbs ................ 1,089 ..... 1,875 .... 2,964

Metro Washington Total .......... 6,713 ..... 9,440 .... 16,153

U.S. Total ...................... 205,102 ... 343,000 .. 548,102

Pub Date: 12/01/96

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