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

December 01, 1996|By Jonathan Bor | Jonathan Bor,SUN STAFF

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.

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