Longevity of Some AIDS Patients Offers Hope

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.

He was one of the first two patients diagnosed at San Francisco General Hospital, before the disease was even called AIDS. Doctors knew at the time--February, 1982--only that Turner had a rare cancer, Kaposi’s sarcoma, that showed up in the form of five painless spots that looked like cigarette burns above his right ankle.

Turner remembers flushing hot at the news that he had a possibly fatal cancer. But people beat cancer, he remembers thinking. Anyway, he thought, being certifiably sick would be a reprieve from his boring word-processing job.

Turner feels the fact he was not given an absolute death sentence--as most AIDS patients today are, in effect--may have contributed to his ability to survive.

An Earlier Close Call

Also in his favor was that he had had a close call with mortality when he came down with hepatitis seven years before. He was in Dallas at the time, working on his MFA in drama at the Dallas Theater Center. (He earned the degree from Trinity University in San Antonio, Tex.).

He said he almost gave up hope entirely when his symptoms--which were severe at times--dragged on far longer than normal.

It was during an internship with playwright Tennessee Williams that Turner made a turnaround back to health. Despite the fact that he was aging and had health problems of his own, Turner noted, Williams worked with zest, arising at 4 a.m. every day to write.

From observing Williams, Turner said he learned “that I’d been perpetuating my illness through this negative mind trip I’d been on. From then on, when my mind said: ‘You can’t do it,’ I’d say: ‘But that’s just your mind.’ ”

Take-Charge Attitude

Drawing on his experience with hepatitis, Turner took charge of his AIDS from the beginning. He quit his job and began to really rest for the first time in years. (He said he knew he was experiencing true rest because he began dreaming again.)

He ate a lot of grains, vegetables and chicken; he gulped Vitamin C, and underwent acupuncture to supplement his chemotherapy.

A holistic doctor encouraged Turner to vent his feelings about his illness in any fashion he could--art, activism, conversation. “The sure sign of someone who’s going to kick the bucket early is someone who turns inward, keeps the fear to themselves,” Turner said.

The doctor suggested his patient draw pictures of his Kaposi’s sarcoma lesions. Those patients who drew large, menacing lesions were expressing the idea that the cancer was in control of them, the doctor explained later. Other patients--like Turner--who drew relatively ineffectual-looking lesions were relating that they were in control.

Turner drew his cancer as a cross-hatched blob, looking a little like shredded wheat. He imagined that the brittle tips of the crosshatching were continually snapping off, reducing the size of the lesion.

His cancer “dried up,” as Levy put it.

Later, thumbing through a National Geographic article on the immune system, Turner came across a photograph of a dead cancer cell. It looked like shredded wheat.

“It was like a victory,” Turner said. “My heart just leapt.”

Since the initial bout of Kaposi’s sarcoma, Turner has developed none of the major opportunistic infections common to people with AIDS. He remains careful about monitoring his diet and his health, and takes interferon injections before bed to prevent a flare-up of the cancer.

He lives in an old Victorian house, which he shares with four housemates. He works out at a gym and gets aerobic exercise daily by climbing the hilly streets of San Francisco--he doesn’t have a car. Born and raised a Catholic, Turner says his prayers daily as he has done all his life.

He’s working on his master’s degree in social work at San Francisco State University, and planning his future. As of next year, he said, his cancer will be officially in remission and he’ll go off disability.

Dr. Levy said Turner is unusual in his longevity with AIDS, “but I would predict that he’s not unique at all.”

Levy said he tells newly diagnosed AIDS patients that he knows of people such as Turner who have lived a very long time with the disease, and “why shouldn’t they be in that category?”

Dr. Martin Finn, medical director of the AIDS program for the Los Angeles County Department of Health Services, agrees that it’s appropriate for medical personnel to cite long-term AIDS survivors as examples for others with AIDS.

“They need that little spark of hope,” he said.

In his guide, “Surviving and Thriving With AIDS,” (available free to people with AIDS or AIDS Related Complex and for $10.40 to others from People With Aids Coalition, 263-A W. 19th St., Room 125, New York, N.Y. 10011), Callen cites New York City Department of Health statistics that of a group of 100 gay men with AIDS, 13 were still alive four years after diagnosis.

Doubts About Diagnosis

Callen, 32, worries that death from AIDS is on its way to becoming a self-fulfilling medical prophecy. Because AIDS is, by definition, the terminal stage of a spectrum of illness, if someone doesn’t die within the expected three years, they will be “demoted from the fraternity,” he said. Doctors will say maybe the patient had AIDS Related Complex and never really had AIDS at all. (Callen said friends of his have been “weirdly suspicious” about his diagnosis.)

“I don’t think anybody should pretend that the mortality rate is not 80% after three years,” Callen said. “But I get really crazy when they don’t mention the 20% survival beyond three years.

“It’s a tall order, I know,” he said, “but it’s time to begin admitting hope into the AIDS picture.”

Callen’s advice to the newly diagnosed: “Prepare for the worst, but hope for the best.”

Callen, who has suffered four bouts of the AIDS-related condition called pneumocystis, said the best bets for survival are those people who have three things going for them: a will to live, someone to live for, and a cantankerous nature. “Survivors tend to be the difficult patients.”

In the end, though, no one--not the doctors, not Callen nor Turner nor any of the survivors they are in touch with--knows why some people have struck this truce with the AIDS virus.

When pressed to explain his survival, Callen gives an answer that is only partly in jest: “Luck, Classic Coca-Cola and the love of a good man.”