The New York Times - July 24, 1983
Valerie Brooks

While they are tended regularly by a phalanx of doctors, nurses, aides and technicians, their contact with the outside world is limited to certain members of their immediate families and virtually no one else.

The nurses who tend these men, whose illness has no known cure, probably do provide some relief, though. No one has closer contact with them or is more matter-of-fact about the illness. Elizabeth Sullivan has been a registered nurse at the hospital for two years. Since December she has had daily responsibility for a 26-year-old man whose symptoms of AIDS began in May.

"It was the draw of the cards," Miss Sullivan said. "He was placed in one of my rooms. I get along with him very well, although he's not verbal and keeps a lot inside. I really don't know how he does it or how his mother does. She stays with him every day from 3 in the afternoon until 10. It matters a lot to him."

Patients who have AIDS often react to their illness, nurses say, in the same way that terminally ill patients react to theirs. A man with AIDS at Stony Brook who was a drug user has his problems compounded by a tracheotomy. He can hardly talk. His mother visits regularly and sits quietly with him. Afterward, she may talk to the nurse about his treatment and cry. Most nurses recognize that it is extraordinarily difficult to come to grips with dying.

The three massive buildings that make up the Health Sciences Center at the State University at Stony Brook are drab. To bring some brightness to the mazelike corridors and anonymous offices of the hospital, Dr. Frederick Miller, chairman of the pathology department at the university and director of all laboratory studies, brings in buckets of roses and fills the vases in every room he can get to. They come from the garden he tends at his home in Stony Brook.

"There's a lot of sadness and pain in a hospital, so the flowers help," said Dr. Miller, who has been at the university since 1970 and at the hospital since it opened in 1980.

"We don't have an animal model for AIDS because there are a constellation of diseases that strike a victim," he said. "Usually the only other situation where we see the same diseases, which are all extremely rare, are in transplant cases and in cancer patients who have had chemotherapy, and even then not with such devastating results. AIDS is a new disease -usually if we look back we find the Egyptians or Romans had something like what we are dealing with, but not this time.

"Fortunately, there's been a reduction in the spread of the disease. Many feel the reason for the leveling off is that the individuals most likely to spread AIDS - male homosexuals -are a knowledgeable part of the population and have reduced their sexual contacts."

AIDS, the mysterious acquired immune deficiency syndrome, has been fatal to 684 people out of 1,831 reported cases nationwide since it was first detected four years ago, according to the Centers for Disease Control in Atlanta. Nassau County has had 15 reported cases and 5 deaths and Suffolk has had 11 reported cases and 5 deaths, according to the counties' health departments.

Seventy-one percent of AIDS victims have been homosexuals; 17 percent, drug users; 5 percent, Haitians, and 1 percent, hemophiliacs. Six percent were attributed to unexplained causes, largely because the patients died before doctors could find out if they fit into the other categories.

The illness breaks down the individual's immunological system, leading to other physical problems. Doctors and the Centers for Disease Control are virtually certain that AIDS is almost always transmitted sexually or by infected needles or in contaminated blood.

Dealing with AIDS patients involves more than medical care. "There's no counseling for patients or for families," said Donald Pisani, a social worker at the University Hospital in Stony Brook for two years. "If an AIDS patient is discharged, no one follows up with visits. Often a family hasn't any idea how to handle the situation. Of course, it's not just AIDS victims who suffer - it's everyone out here. There are only 15 social workers to cover this 270-bed hospital."

"I'm seeing an AIDS patient now," he added, "who is very depressed -stays in his room all the time and watches television. If I can, I'll get him to do the work he did outside the hospital in here - because he could. But with all the other people I have to see, I only get to him every couple of weeks."

The medical staffs of several hospitals - North Shore University Hospital in Manhasset, the Long Island Jewish-Hillside Medical Center in New Hyde Park, the Elmhurst Hospital in Queens and the University Hospital at Stony Brook - have geared up their research and services to assist AIDS victims.

At Elmhurst Hospital, Dr. Peter Nicholas and Dr. Joseph Masci work in the program with two nurses, under the auspices of Mount Sinai Hospital in Manhattan.

"Our service is not just for AIDS patients," Dr. Nicholas said, "but for any patient with a serious problem. People with cancer have very similar reactions to their illness. Like AIDS, it's a bottomline disease - but AIDS patients feel even more isolated. Their feelings run the spectrum, as Kubler-Ross described in her excellent study of death and dying. Fear, panic, denial and acceptance are the usual stages - although not everyone goes through them all."

"We try to reassure them they will not be abandoned or be considered hopeless," added Dr. Nicholas. "That's the natural fear, the horror. It's irrelevant to apply statistics. If someone is alive, there is realistic hope. We do have therapies to try."

The program at the 900-bed Elmhurst Hospital started in mid-1981. "We have about 35 social workers here," said Dr. Nicholas, "and they stay involved with patients even after they've been discharged. Since people with AIDS need to come back for frequent tests, we have a chance to keep up with them. From the first diagnosis, we meet with families and those close to the patients and describe the disease and the therapies available. We've had 19 cases here.

"Most families have been very good - they want to know what it's going to be like - will they catch it. Hysteria and fear are understandable. Most important is getting everyone accurate information regarding what we know so far. We started a series of seminars for the staff, and people felt comfortable asking questions and are now less concerned."

Everyone counts in such crises -doctors, nurses, lab technicians, blood donors, social workers, friends and family. So do machines. Dr. Raymond Dattwyler, associate professor in the department of allergy, rheumatology and clinical immunology at Stony Brook, regularly uses a fluorescent activated cell sorter, which costs about $200,000, to separate and analyze defects in blood cells, a key factor in diagnosing AIDS.

"The usual ratio is two T helper cells to one suppressor cell," Dr. Dattwyler said. "As many now know, with AIDS the ratio flips. But a viral infection can change the ratio too. We don't use the cell sorter to diagnose AIDS -although we get requests to do so even though it would cost the patient $500 -we use it to hunt for causes."

Only one of the three doctors at Stony Brook who have AIDS patients in their care would agree to be interviewed. They refused because they felt the news media had sensationalized the disease, further isolating their patients and alarming the public.

Dr. Stuart Nelson, who has had an AIDS patient for several months, said: "We don't have anything to go on now - we're just supporting, trying to help them go from day to day and face things as they are. At least here at Stony Brook we know what we're dealing with - we are a big research center, a community of academics. A local G.P. or community hospital can't take care of someone with AIDS like we can here."

"We are like the blind man feeling around an elephant and trying to figure out what it is," said Dr. Stephen Saletan, associate professor of medicine in the division of hematology at Stony Brook. "Our understanding of the immune system is so primitive. What we need besides all our scientific high technologies is some terrific idea. The solution will come from someone really using their head."

The only doctor interviewed who showed some optimism about finding a cause of or a cure for AIDS was Mark J. Kaplan, chief of infectious diseases and immunology in the department of medicine at the North Shore University Hospital.

"In the May 20 issue of Science Magazine," he said, "there's a report of researchers at the Harvard University School of Public Health, the National Cancer Institute and the Pasteur Institute in France finding a possible link between AIDS and human T-cell leukemia virus, which has been connected with a rare type of human cancer. My only part is sending tissues to the N.I.H. for tests and they are working full time. I think the new find is our best lead so far - this just might be the real McCoy."

Dr. Barry Coller views things differently. "I'm not optimistic about researchers finding a solution to AIDS very soon," said Dr. Coller, who is professor of medicine and pathology at the State University at Stony Brook and a consultant in the hematology division at the hospital. "We're trying everything and nothing has worked so far. I've been consultant on the six cases we've had here. We're now assuming AIDS is a virus and that we'll be able to vaccinate when we find out what the virus is.

"One problem, of course, is there's a long lag between infection and the time the syndrome becomes manifest - incubation may be three or four years. There's the recent case in Paris of the Frenchman who died of AIDS four years after getting a blood transfusion in Haiti when he had an automobile accident. That means even when we have a vaccine, it will be quite a while before we know with any certainty if it works."

Usually one would not connect a peaceful beach resort with illness, but because such a high percentage of AIDS victims have been homosexual, sickness is very much on the minds of men and women who like to spend their free summer days at Fire Island Pines and Cherry Grove, longtime homosexual enclaves on Fire Island.

"My boss talked to me and all the other guys who work on the ferries to Fire Island," said Cullen Lory as he maneuvered his boat into the pretty harbor at the Pines. "He told us we didn't have to worry about catching AIDS from just being around gays coming out here and to Cherry Grove."

"It doesn't seem AIDS has kept people away," he said as his boatload of men and women debarked at the dock. On the beach, Scott Herbst and Anthony Lentini shared a blanket and a thermos on the sand and joked half-heartedly about the fear. "I've changed my way of life," Mr. Herbst said. "Maybe I'm a classier kind of person now. No more sleazy life for me. I think twice before getting involved the first time I see someone I like."

"Everyone's keeping to their own clique," Mr. Lentini said. "We're almost afraid to talk to anyone else. It's passe to make gestures to anyone. I'll tell you what's a sure sign things are different. Usually the discotheque at the Pavilion is jammed on Friday night - last night it was almost empty at 11 P.M."

"I haven't been here for a long time," said Edward Tyler as he walked along the edge of the water, avoiding the joggers and the waves. "It's not a favorite place of mine -with all the drinking and partying and drugs that always go on."

There were women on the beach, some with men, some in pairs or alone. Mary Aaron and her husband have been renting in Cherry Grove for several years. "We probably won't come out as much anymore, though," she said as her daughters Allison and Jennifer played in the wet sand. "Mainly because there are not enough kids here for the girls to play with, not because of AIDS. But I do feel personally concerned - we're actors and live in the Village. A friend of ours died of AIDS last year and my hairdresser is sick now."

The Ice Palace at Cherry Grove is a European-style resort with a hotel and pool and discotheque, elegant shops, a restaurant and bars strategically placed around the pool. Tom Gibson-Marshall has been working as a bartender there for two years.

"Sure, there's fear about AIDS, but you can't stop living," he said. "Everyone's more careful, and many gays are looking for permanent relationships."

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