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Longevity of Some AIDS Patients Offers Hope

September 06, 1987|ANN JAPENGA | Times Staff Writer

People with AIDS recite the names like a prayer. They whisper the words at bedside, pass them along to the newly sick: Dan Turner, diagnosed in February, 1982, Michael Callen, diagnosed in the summer of '82 . . . .

They are the names of AIDS survivors, people who have lived far longer than the average 18 months normally allotted to patients from the time of diagnosis.

Some who have--for now, at least--beaten the odds don't like to publicize their longevity for fear of somehow jinxing their good fortune, one long-term AIDS survivor said. Others feel that dealing with the public is just too stressful, and their lives depend upon minimizing stress so as not to tax their immune systems.

But for some--incensed that media reports so often refer to the disease as 100% fatal--offering hope to others is worth the risk.

There are now 23 AIDS-diagnosed patients enrolled in a Long-Term Survivor Study recently launched at the Center for Disease Control in Atlanta. The earliest any of the participants in the study were diagnosed as having AIDS was 1982, according to Dr. Ann Hardy, the project officer. She pointed out, however, that there may be longer-term cases that have not yet enrolled in the study.

Hardy estimates there may be as many as 100 eventually included in the study, but, she added, it also may be determined that some don't actually have AIDS.

Michael Callen, a New York City singer-songwriter and AIDS survivor, said in a talk he gave to an annual meeting of the American Public Health Assn. last year: "The unthinking repetition of the notion that everyone dies from AIDS denies the reality. But just as important, it denies the possibility of survival. It's hard to say which is the greater crime."

Thirty-nine-year-old San Francisco resident Turner said: "I try to let people know there are people living with AIDS. I do feel responsibility to those people whose luck was not as good as mine, but who had as good an attitude and who tried as hard as I did."

Dressed in a T-shirt and jeans, wearing a cap from Castle Crags Tavern, with a day pack hooked over one shoulder, Dan Turner disembarked a flight at Los Angeles International Airport on a recent morning. He was in town to see a play by Joe Orton. Turner, a playwright himself, said he once had his work compared to Orton's dark comedies.

It quickly became clear that, despite his awesome longevity in the face of AIDS, Turner is no superman, nor does he make any attempt to play that role. He has a chronic cough and is plagued by minor health problems, such as conjunctivitis.

He admitted to quite human emotions: He wishes he could tell his mother more about his life. And, because he has lost so many friends to AIDS, sometimes he gets so depressed he simply pulls the covers over his head in the morning.

Despite his ordinariness, some people can't help but see Turner as hope personified. The status of hope-giver can be trying, Turner said.

First, there is the sense of obligation to keep living. "I worry sometimes about getting hit by a car."

Another problem is jealousy. One friend, in a terminal phase of AIDS, said on his hospital bed: "Dan, how do you do it? You know, I'm jealous of you."

In Turner's case, unlike some of the long-term survivors, there is a scientific answer to the how-do-you-do-it question.

Dr. Jay A. Levy, a professor of medicine at UC San Francisco Medical Center, has found a subset of lymphocytes in Turner's blood that seem to act as suppressor cells, keeping the AIDS virus at bay. When he removes the suppressor cells from Turner's blood in the laboratory, Levy said, the AIDS virus multiplies; return the cells to the blood, and the virus becomes inactive again.

"We don't think it (the suppressor cell) kills the virus or the infected cell, but it seems to stop replication of the virus," said Levy, who was one of the first U.S. physicians who identified the AIDS virus.

By studying Turner and others, whose bodies are successfully fighting the virus, Levy hopes to find clues to combat AIDS. (The other people in his suppressor-cell study have tested HIV positive, but, unlike Turner, do not actually have AIDS.)

Turner agreeably complies with Levy's wishes. He's around the lab so much that he's come to seem like a member of the staff, Levy said. Turner looks on with polite interest when Levy shows him his own cloned suppressor cells in a petri dish.

But Turner exhibits no abiding interest in science, or in the scientific explanation for why he is alive today.

Uneasy Coexistence

"It seems arbitrary, of course," he said of his survival. "I've learned to coexist with the AIDS virus. It could get the upper hand at some point, but right now we have struck up some kind of bargain."

This anthropomorphizing of the virus ("If it kills me, it kills itself") is no accident of speech. Turner has spent many hours and days cursing at, getting to know, and--ultimately--calling a truce with his invader.

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