AIDS: Hope And A Challenge

A year ago, Matthew Grady was talking about raising money for an East End AIDS hospice for the dying. These days he also talks about how to help people who only recently seemed resigned to death, but now may have a reprieve.

Mr. Grady heads the East End AIDS Wellness Project, an educational and support agency. In recent years he has fought the good fight on behalf of continued state-subsidized drug treatment for people with AIDS, local support of the East End AIDS Clinic at Goodfriend Park in East Hampton, and Federal Ryan White Act monies for prevention programs in schools and among minority populations here.

But the introduction of protease inhibitors, an expanding group of medications which appear to prolong life, "took people by surprise," he said this week. Protease inhibitors attack the virus's ability to replicate and appear to be more effective the earlier in the illness they are taken.

Alive, But Little Else

As a result of the medicines, some East Enders with advanced AIDS who had sold most of their worldly possessions and "maxed out" their credit cards are still alive, but have become virtually impoverished, Mr. Grady said. "The only thing they own now is a cemetery plot."

AIDS was the third most common sexually transmitted disease in the nation last year, according to the Federal Centers for Disease Control and Prevention in Atlanta.

Long Island, with roughly 5,000 cases, is said to have the largest number of AIDS patients in any suburban area. One out of every 100 U.S. AIDS cases and AIDS-related deaths occurs here.

Protease Inhibitors

The World Health Organization estimates that about 22.5 million people are infected with AIDS worldwide, about 42 percent of whom are women. Half are under 25.

Federal Drug Administration approval this year of the first protease inhibitors, with more expected in the next few months, has added a new demand to life in the age of AIDS. The challenge now, advocates say, is to keep those with the disease physically and financially alive and at the same time push for more and earlier AIDS testing.

Adam Grossman, a 31-year-old attorney and Noyac resident, was diagnosed H.I.V.-positive in August 1994. He said he began treatment the following year with A.Z.T. (Retrovir), which is thought to disable the AIDS virus.

He "never did get sick," he said, but he did not tolerate A.Z.T. well, experiencing severe nausea.

In time, Dr. Jennifer Schranz, who until recently worked at the East End AIDS Clinic, began prescribing experimental combinations of drugs. This fall he began taking Crixivan, the protease inhibitor known as Indinavir, in combination with Videx (ddI) and Zerit (d4T).

Activist: "Get Tested"

"The virus is now almost undetectable," Mr. Grossman said. "While no one knows yet how long this will last, my perspective of my lifespan has changed from five to six years, max, to longer."

"What I don't know is - a little longer, or a lot?"

Mr. Grossman is committed to helping the East End's young people understand that "the way of the world now, if you're sexually active, is you get tested." It's the only way to "protect their future and their health."

"I had two sexual partners in my life," Mr. Grossman said. "All you need is one."

He tells teenagers that there are many ways to express physical intimacy besides intercourse, and practices what he preaches.

"This virus," Mr. Grossman promised, "is only taking ME out."

Suspicious Colds

Janie, 33, has been living with AIDS for a decade. She acquired the virus from a man who injected himself with drugs. About two years after their relationship ended, and after marrying another man, she found she was "getting a lot of colds and not getting better."

She also had repeated "yeast infections, abnormal Pap smears, and cervical warts." She did not know, she said, that "there was any connection" between those symptoms and H.I.V.

After testing positive, she recalled thinking, "I can stand here and cry - or go on to [a graduate school] class."

Janie moved to the East End about two years ago and was referred to the University Medical Center at Stony Brook, where she joined a study on Crixivan.

"I feel well now," she said, adding that her biggest concern is fatigue.

New Lease On Life

Janie takes 25 pills a day, at 8 a.m., 4 p.m., and midnight. Besides the Crixivan, she takes A.Z.T. and 3TC (Epivir). The regimen requires that she take the pills on an empty stomach, but that she eat something within an hour.

Not unlike others taking the new medications, Janie now views her condition as a "chronic" illness, rather than a death sentence.

"Four years ago, I didn't think I'd be here," she said. "Now I have dreams of a house and a picket fence."

"I feel very grateful, especially on birthdays," she added. "It sounds corny, but sunsets are a lot more beautiful, and watching the seasons, you appreciate life a lot more. I don't sweat the small stuff."

Hopeful Diagnosis

John, 38, another East Ender, was diagnosed in 1984. Within four years, he had become ill and was in and out of hospitals, experiencing fevers and night sweats so intense the sheets frequently had to be changed. He also complained of periodic memory loss.

John, too, began taking protease inhibitors this year, and within a few months was told that his "viral load" - that is, how much AIDS virus is present in the blood and lymph nodes - had been dramatically reduced. He takes Crixivan, d4T, and 3TC as well.

A recent study at the Academic Medical Center of the University of Amsterdam showed that 90 percent of the AIDS virus "lurks" in the lymph glands, where it destroys the architecture of the immune system.

To cover living expenses, John and his lover, who died in April, liquidated an insurance policy that had been sold to a company that paid just a few cents on the dollar. "It was the only option," he said.

Vulture Insurance

A slew of companies have come on the scene, explained Mr. Grady, that will buy a percentage of life insurance policies covering terminally ill people. "The amount they'll pay is determined by how close to death they are," he said, with the highest payments going to the sickest.

As demonstrations marked World Aids Day in more than a dozen world capitals on Sunday, Mr. Grady pointed out that on the East End "there is nothing set up yet to help people who now look ahead to lives which may be longer than expected."

Such support efforts as Ryan White funds, he said, "are still helping people die."