First published on May 22, 1983.
THE TWO PURPLE MARKS that Alan Fraser had discovered on his right thigh last Sept. 10 didn't look menacing. He probably wouldn't even have noticed them if he hadn't been looking for something unusual when he took his shower that day.
With the warm water flowing down his back, Alan bent over to inspect the marks. Each was about the size of his little fingernail and both were raised. They weren't pimples, nor did they resemble any rash that Alan had ever had. They looked more like very small and well-defined bruises, but if they were bruises, then why didn't they hurt when Alan pressed them? He pushed harder and felt a firmness under the surface.
Alan shut off the water and got out of the shower. He was terrified. The marks proved to him beyond any doubt that he had the disease he had feared most. Three of his friends had recently gotten the disease and two of them had marks just like the ones he had just discovered. Alan was convinced that he had AIDS , the mysterious and highly lethal disease that had reached epidemic proportions in New York City, where Alan lived. Already several hundred fellow New Yorkers had been stricken and, because AIDS was incurable, most of them would die.
Alan called in a friend and told him about the discovery. The friend said it was probably nothing, that he shouldn't worry about it. Alan tried to make light of it also, but he couldn't. Two days later he went to his doctor.
The doctor examined the lesions. He also didn't think that they were anything serious. But, he added, perhaps they should follow them for a week or so - just to be safe.
THE DOCTORS CALL it "acquired immune deficiency syndrome" because AIDS is acquired after birth and destroys part of the immune system, leaving the victim hopelessly vulnerable to fungal or viral infections. Doctors usually can cure these so-called secondary infections, but because they can't correct the underlying problem of immune deficiency, it's only a matter of time before some infection defies treatment and kills the patient.
The two infections that most often strike AIDS victims are Pneumocystis carinii, a lung disease that rarely bothers otherwise healthy persons, and Kaposi's sarcoma. Kaposi's is a skin cancer. Its most distinctive characteristic is small purplish spots. These grim facts were well known to Alan, a bright, well-read person. Ever since his friends had gotten sick, he had been reading everything he could find on the disease. He knew more about it than most physicians, including his own, who didn't think the spots were serious.
Alan inspected the spots every day after visiting his doctor, but they didn't get smaller. After a week of this, he went back to the doctor and arrangements were made for him to go to the Memorial-Sloan Kettering Cancer Center. There he would be examined by Dr. Bijan Safai, a world famous dermatologist. His specialty was Kaposi's sarcoma.
ALAN WAS OVERWHELMED by the size and hectic atmosphere of Memorial-Sloan Kettering when he arrived for his appointment with Safai. The hospital complex and research laboratories fill an entire city block on Manhattan's East Side. The clinic waiting areas are large open spaces off the elevators, with rows and clusters of modernistic chairs. Most of the seats are filled with patients and their friends and relatives. Here they sit, watching dozens of doctors and nurses rushing about in the adjacent treatment areas. Phones in the surrounding offices ring constantly.
Even in blue jeans and a windbreaker, Alan had a meticulous appearance. His hair was short, he had a neatly trimmed mustache and he wore glasses. He was a relatively small man - standing 5 feet, 7 inches tall and weighing 133 pounds - but his body was well-proportioned and strong, thanks to frequent workouts at a gym. He was, in fact, the picture of robust health, and seemed out of place here among so many weak and sick people.
Alan didn't have to wait long. Only a few minutes after arriving, someone called his name and he was ushered into an empty examining room, where he was asked to put on a hospital gown. A few minutes later Safai came in. Safai, a 43-year-old native of Iran, was of average size with wavy dark hair, glasses and a calm manner. He wore a long white coat and spoke with a slight accent.
Safai asked a few questions and examined Alan, paying particular attention to the spots, which he peered at and pressed. It all took only a few minutes. Then Safai delivered his verdict. "I am 90 percent certain that it is Kaposi's sarcoma," he said.
Alan nodded. He felt no emotion at this moment. It would come a short time later. He listened as Safai explained that a definite diagnosis could be made only with a biopsy, for which one of the spots would have to be removed and examined under a microscope. Did Alan want to have a biopsy? Of course he did, Alan said, doesn't everyone want to know for sure? Safai said some patients didn't. Safai left, and a few minutes later another doctor came in, removed one of the spots and told Alan that the results would be ready in a week.
The full terror of what had been revealed to Alan began to build as he headed to the bank, where he worked as a computer program analyst. The spots were Kaposi's. He had AIDS . He had no protection against virus or fungal infections. Maybe medical science could protect him for a while. Maybe the doctors could cure the Kaposi's. Maybe they could fight off the next infection that would eventually strike him - maybe even the infection after that one. But eventually one of them would not be defeated by the doctors. And this infection would kill him. He could do little but wait for it all to happen.
Alan broke down and cried shortly after arriving at the bank. He tried to work, but couldn't. So he went home. Six days later Alan got the biopsy results over the telephone. Safai was right. Alan had Kaposi's.
MEDICAL RESEARCHERS are both frightened and excited by AIDS . They are frightened because the epidemic is spreading. Now topping 1,500 cases with more than 550 deaths, the number of victims is doubling every six months. An
average of four new cases a day are being reported to the Centers for Disease Control, the federal agency responsible for tracking epidemics.
Discovered in 1981 after it struck a handful of homosexual men in California and New York, AIDS soon reached epidemic proportions, infecting people throughout the country and eventually in Europe. At first the epidemic stayed within the male homosexual community, leading epidemiologists to believe that the cause of AIDS was associated with gay sexual activities or the sex-enhancing drugs commonly used by urban gays.
But then the disease started turning up among intravenous drug users, who were heterosexual and didn't use the same type of drugs the gays did. The most obvious explanation was that the IV drug users were being infected with dirty needles from gay men who also used IV drugs. But soon AIDS was being found in a completely different quarter, among people who were not gay and didn't, for the most part, use IV drugs - Haitian immigrants. Still, it seemed that the straight, white middle-class world was being spared this plague.
But then last summer came the first reports on the hemophiliacs. Cases of AIDS were beginning to turn up among these people. A short while later came some more reports of AIDS being found in people who had recently received blood transfusions, and then among the children of parents in high-risk groups, and then people who seemed to belong to no high-risk group at all. It seemed that the disease was spreading into all segments of society, and soon no group of people would be safe.
Any epidemic is a fearful thing, but public health officials are particularly disturbed about AIDS because it seems to be a completely new type of disease. No one has any idea what causes it or how to treat it. It is the very uniqueness of the disease that is exciting researchers. With the exception of congenital conditions, never before has there been a disease that attacks only the immune system, leaving it for another disease to cause symptoms and death.
Such a disorder is potentially an extremely valuable tool for scientists studying immunology, currently one of the most promising and exciting areas of medical science. Because only the immunity is affected by the disease, AIDS enables researchers to study the immunologic process in its purest form without the confounding factors of other diseases, which in the past had always been associated with immune abnormalities.
Because AIDS is potentially a devastating public health problem, researchers do not have the luxury of leisurely contemplation of immune system with this new tool. With hundreds of people dying every year, the pressure to solve this mystery is immense.
In only two years, AIDS research has become a major area of investigation for U.S. scientists. Last year the Public Health Service spent $5.5 million on AIDS . This year $14.1 million will go for basic research and investigation of the epidemic. Next year, the agency expects to spend $17 million.
But there is no telling how long it will take to solve the mystery. And doctors, meanwhile, confronted with so many patients, can't sit back and wait for the discovery of the causes and cures of AIDS . They have to do something now, so they're experimenting with a variety of drugs and treatments with only the hope that they will work.
Some medical centers are trying to treat AIDS with such things as drugs, radiation and a process called plasmapheresis, which is designed to remove disease-causing agents from the blood. At Memorial, physicians are attempting to reverse the immune depression of AIDS with interferon, a biochemical the body naturally produces in response to infection. Recently, scientists have learned how to harvest and manufacture it artificially in large quantities. Unlike a vaccine, which works against only a specific disease, interferon seems effective against a wide range of infections - perhaps even AIDS.
Safai thinks interferon is the most promising treatment. The theory is that if he can raise the patient's natural immunity with interferon, then the patient's restored defenses would wipe out the Kaposi's lesions along with the underlying AIDS disease. In effect the Kaposi's spots would serve as markers, telling Safai whether the patient's immunity had been restored.
Alan knew about this work from his reading, and it was the main reason he chose Memorial over other hospitals. It made no sense to Alan to treat the spots and do nothing about the underlying disease process that was
responsible for the Kaposi's in the first place. But before Alan could be accepted to the research program, he had to undergo tests to determine whether his immune system was strong enough to tolerate the interferon, which tends to prevent the blood from clotting properly.
ALAN RETURNED to the dermatology clinic on Oct. 20, hoping that the preliminary blood tests wouldn't keep him out of the interferon studies. The waiting room, as usual, was filled with patients waiting to be seen by the staff rushing around in the adjacent treatment area. Among the swirl of white- coated people was Janet Figueroa, the nurse who coordinated the care of AIDS patients for Safai, and the person Alan was supposed to see that day.
Carrying a shoulder bag, Alan followed Ms. Figueroa down the bustling hallway of the treatment area, through a smaller hallway to Room 442, a cluttered office filled with a few chairs and cartons of medical supplies. Despite its spartan appearance, Alan found the small room something of a haven from the noise and constant motion of the waiting area.
Explaining that she would be right back, Ms. Figueroa showed Alan to a chair and left, closing the door behind her. She didn't want an open door to attract anyone else to this room she had worked so hard to find. Alan looked about the small, crowded room. Now that he was becoming part of the interferon work he had read so much about, it seemed much less glamorous than it had appeared in all the stories.
The door banged open and Ms. Figueroa reappeared, carrying a box filled with glass vials and a syringe. There were 15 tubes in all, with different color-coded plastic stoppers. The tubes would go to different research laboratories at Memorial. Some of the blood studies would help guide doctors in caring for Alan, but most would be studied in research laboratories, which eagerly sought blood and tissue samples from victims of the disease. Safai keeps on his desk a typed list of 40 researchers at Memorial who want different types of specimens from the AIDS victims he treats.
Talking constantly as she worked with syringe and tubes, Ms. Figueroa tried to ease the terror of having AIDS by making patients realize that they were becoming part of a large research effort involving hundreds of investigators and support personnel, most of whom they would never see but would nevertheless be there.
"You're going to get to know the immunology nurses real well," she told Alan as she inspected the veins in his arms. "They're the ones who'll give you the interferon, and they'll be with you all the time. "
Having found a vein that suited her and having tied it off with a rubber cord, Ms. Figueroa deftly stuck the needle of the syringe into it. Alan turned away just before the needle found its mark. "And you'll get to know the rest of the boys," she said, referring to the other patients. Alan tried to relax as she filled one of the color-coded tubes.
"I already know someone," Alan said, still looking away from his arm. By a remarkable coincidence, Alan explained, he had met Jerry, an old friend, in the waiting room. Jerry had just gotten the results back from a biopsy. He, too, had Kaposi's. Yes, Ms. Figueroa said pensively, they had been seeing a lot of young men with this disease lately.
But she didn't stay with the subdued mood for long. "You'll be in the hospital for eight days," she said, filling another vial. Why such a long hospital stay? "It's an experimental drug and we want to make sure that everything is OK. A lot of different specialists will be dropping in to see you. Interferon is not a bad drug. You might have some fevers and chills, as though you had the flu. But interferon doesn't make you nauseous and you won't lose your hair like with some of the cancer drugs. "
Alan wanted to know when he would be admitted. It could take a couple of weeks, she said, because the beds in Memorial were in demand. "The hardest part is right now," Ms. Figueroa said, "waiting for the treatment to begin. But I want to tell you, even though you have to wait, no one has forgotten about you, and it will make no difference in outcome if you have to wait. Kaposi's is very slow. "
By the time she was finished, Ms. Figueroa had filled 15 tubes with blood and answered all the questions that Alan had for the moment. Now Alan would have to wait patiently for the next phase of the acceptance process, which wouldn't come for a couple of weeks. Surgeons would now have to get a biopsy of the lymph nodes in his groin, to see if any of the cancer had spread from the skin to the rest of his body. Since these small glands filter contaminants from bodily fluids, they're extremely valuable in following the spread of disease.
The outlook for Alan would be much worse if the Kaposi's had started to spread. This was very much a possibility since his glands were swollen, indicating that they were infected.
THE TESTING WENT ON for weeks and was tiring for Alan, who had to make repeated trips to the hospital, but the interferon therapy couldn't begin without it. The researchers had to know precisely what was wrong with Alan so that after therapy had begun they could determine with equal precision how the interferon was helping him - or if it was helping him.
Determining such a thing is not easy. After all, doctors aren't even sure how to define the disease, let alone treat it. Because they don't know what abnormalities to look for, the laboratories must measure all sorts of things, hoping that some of them will turn out to be involved with the disease.
Since the most obvious clue was that AIDS had something to do with immunity, much of the blood Ms. Figueroa had drawn would be used to determine how Alan's immune system was working - and if it wasn't working perfectly, just what it was that was malfunctioning.
Even narrowed down to this point, the hunt would be difficult, because the immune system is a dynamic, constantly changing world of biochemicals and biofeedback systems. It is a maddeningly difficult thing to measure because so many processes are interwoven, with increases in one component resulting in decreases in another, or vice versa.
Much of the immunology research would focus on highly specialized lymphocytes in Alan's blood called T-helper lymphocytes and T-suppressor lymphocytes. Working in conjunction with each other like "on" and "off" switches, helper and suppressor cells modulate the immune system's response to infections.
Acting something like an early warning radar system, the T-helper cells spot infectious agents as soon as they enter the body and call in a bombardment of white blood cells, antibodies and other proteins manufactured by the body in response to disease. Once it looks like the battle has been won, the T-suppressor cells bring a halt to the attack and restore the body's equilibrium.
Healthy people tend to have twice as many helper cells as they do suppressor cells, which means they have a helper/suppressor ratio of 2. In AIDS patients the ratio is inverted - they have two or three times as many suppressor cells as they have helpers - and their ratio is 0.5 or less.
One theory is that AIDS victims don't have enough working helper cells to mount an effective immunologic attack, and even if a response gets going, the excess suppressor cells quickly snuff it out.
This ratio would become an important factor in Alan's life. Soon he would be referring to it with the same ease and interest as sick people talk about their temperatures and blood pressures. Alan didn't yet know what his ratio was, but it undoubtedly was low since he had AIDS , and no one with this disease had a normal ratio. Safai's hope was that the interferon treatment would not only eliminate the Kaposi's, but also somehow help improve Alan's ratio.
ALAN UNDERWENT the lymph biopsy on Nov. 2. It was now almost a month since he had first come to Memorial, and still there was no indication when he might be admitted or even if he would be getting the interferon. Chatting happily with the nurses he was getting to know so well, he appeared to be in a good mood and talked about his friend Jerry, who was about to start the experimental program.
The surgeon arrived and immediately went to work, giving Alan a local anesthetic. It took only a few minutes to remove the lymph node, which looked no larger than the tip of Alan's finger. Taking the tissue from the surgeon, a nurse efficiently packed the specimen into a double-wrapped clear plastic bag, stuck on a label that said in shocking green ink "CAUTION KS/ AIDS " and left it in a rush pickup box to be taken to the pathology lab. Because such samples might be infectious, the hospital took special precautions in moving them through the building and rushed all studies so that the material could be disposed of as quickly as possible.
The pathology results as well as the findings of a dozen or so other specialists would be sent back to Safai, who would analyze it all and determine Alan's suitability for the interferon program. As far as Alan was concerned, the two most important things the pathology laboratory would be determining were his T-cell ratio and whether the nodes contained Kaposi's cells. If cells were found, it would mean that the cancer had started to spread through his body, and the prognosis would be much worse.
Being the world authority on Kaposi's, Safai had been overwhelmed with patients, and the numbers were increasing each week. He had already seen about 60 Kaposi's patients, and one quarter of them were still waiting to undergo the workup that Alan was now going through.
Because so many of the studies were new and complicated, the evaluation of an AIDS patient was extremely expensive, the initial examination costing in excess of $2,000. And even after a course of treatment was determined, there remained the hurdle of finding an available bed at this internationally famous cancer hospital. But Alan was lucky. On Nov. 9, exactly six weeks after Safai told him that the spots were probably Kaposi's and two months after he first saw the marks while taking a shower, Alan learned that he would be admitted for treatment. He found out when he went in to get the results on all the different tests.
Dressed in a pinstripe suit because he was going to a business meeting that afternoon, Alan walked into one of the clinic offices and found Safai seated behind a desk, with a medical student sitting on a chair and Ms. Figueroa sitting on the edge of an examining table. Alan made some nervous small talk while Safai looked at the reports on the table in front of him. Finally the doctor spoke. He told him the good news first.
Alan's lymph node biopsy did not contain Kaposi's cells; the node apparently was enlarged in response to some infection. This was a good sign because it meant that the Kaposi's was probably limited to the spots on his skin. Also, they found no evidence of other active disease like cytomegalovirus or hepatitis or herpes simplex.
Safai then got to the bad news. He told Alan that his T-cell ratio was, as expected, inverted. Alan's ratio was very bad - 0.1, or only 1/20th of what it should have been. "So putting it all together," Safai said, moving ahead quickly, "you have AIDS and you have a cancer. "
Falling back on the one positive fact he could think of, Alan asked Safai if it was a good sign that he had gotten only two Kaposi's lesions. "If the lesions go away, that's beautiful," he said. But the fact that no new ones had turned up during the last two months meant nothing.
Safai then explained interferon to Alan. At first it sounded like the perfect drug for AIDS patients - it fought all types of viral infections, slowed or stopped the growth of cancer and, it could be hoped, restored immunity. But so far in limited trials it was turning out to be far less than perfect for patients with Kaposi's. It had worked in only 25 percent of the patients tested in initial studies. All the others had to be dropped from the study and put on conventional drugs.
If the drug doesn't work, was there anything Alan could do to improve his chances? Safai told him that they did not know what caused AIDS or how it was spread, but very likely AIDS was an infectious agent passed through close personal contact and possibly through the blood, saliva and sperm. Sexually active homosexual men were much more likely to get AIDS than anyone else, Safai said, so Alan should stop having sex and should not donate blood.
Alan shook his head in bewilderment. He told Safai how he knew 10 people who had AIDS . This amazed him because the 10 people constituted 1.5 percent of the known nationwide total of AIDS patients. Even though Alan had a large group of friends, it was highly unlikely that he would by chance know so many AIDS victims unless the circle he was traveling in was particularly vulnerable to this disease. Safai shrugged his shoulders. AIDS was a mysterious disease. There were so many unanswered questions.
Where do we go from here? Alan wanted to know. He was anxious to get started with treatment. Knowing that he had the disease and not doing anything about it was draining his emotional strength. Safai said they would admit him to the hospital. When? Safai looked to Ms. Figueroa. "We can bring you in Tuesday," she said.
WHEN THE EPIDEMIOLOGISTS from the CDC started their investigations in the gay communities of San Francisco, Los Angeles and New York, they focused on a very narrow, high-living segment of this subculture and found extraordinary sexual activity and many sexually transmitted diseases. Undoubtedly foreign to most homosexuals in this country as well as heterosexuals, this is the world of urban, "fast-lane" gays, mostly men in their 20s and early 30s who spend much of their free time in gay bars, discos and bathhouses, where orgies flourish and sex with anonymous partners is more common than conversation.
The mecca for these people is Greenwich Village, filled with bars and back- room bookstores that cater to sexual fantasies most people in the straight world couldn't even imagine, let alone think of participating in. It is a small community located in the nation's largest city where everyone seems to be in intimate contact with everyone else, even though they might not know each other's names.
It is not uncommon for a homosexual to spend the day as a very respectable and very conservative businessman and then break out at night with a spree of sexual encounters with a half-dozen men in the baths or back rooms of stores and bars.
Attempting to find out what was unique about the people who got AIDS , CDC investigators interviewed gay men with the disease and compared them with gays who did not have AIDS . Two strong differences were seen in the two groups: the homosexuals with AIDS had sex with many more people and spent much more time in the bathhouses.
The statistics on sexual contacts were astounding. The typical AIDS victim had oral or anal sex with an average of 60 people a year - twice as many as those in the other group - and the average estimated lifetime total of partners was 1,160. The epidemiologists couldn't understand how it was possible to amass such large numbers until CDC sociologist William Darrow started interviewing gays and discovered that it was not uncommon to have sex with five to 10 people in a single night at the baths.
To even the sexual athletes of the straight world, this might sound like a heroic achievement, but it's not as demanding as it sounds. For epidemiologic purposes the CDC is being very liberal in its definitions, and has defined a ''sexual contact" as inserting the penis into the anus, vagina or mouth or having a penis inserted into the anus, vagina or mouth. Orgasm is not a defining factor.
Disease, even in the straight world, is easily passed through sexual contact, but homosexual men are especially vulnerable because the rectum is more easily traumatized by penetration. Even when care and lubricants are used, gay sexual practices damage the mucosal lining and open the way for infection by all manner of disease-causing organisms. Homosexual men are plagued with hepatitis; cytomegalovirus, which in severe cases can damage the liver; Epstein-Barr virus, which causes infectious mononucleosis; gonorrhea and other venereal diseases; candidiasis, a yeast infection of the skin and mucous membranes, and amebiasis, an infection of the colon.
Virtually all of the gay AIDS victims have engaged in "fisting" and ''rimming. " Fisting consists of shoving the clenched fist into the rectum, and in rimming the tongue is used. To enhance these activities, many gays use ''poppers," the drugs amyl or butyl nitrate, which relax the sphincter muscles and prolong orgasm by dilating the blood vessels to increase the flow of blood to organs.
The homosexuals seemed so pathetically vulnerable to disease, and for so many different reasons, that the mostly straight scientists had a field day proposing theories. Several groups blamed the "poppers," saying that frequent use of these drugs lowered the immunity, a theory that lost support as more and more people who never used the drugs came down with AIDS.
Other scientists suggested the cytomegalovirus, since virtualy every AIDS victim had been infected with it. This was a particularly attractive theory because the virus was known to be transmitted through semen, which would have easy entry into the blood through the damaged rectal lining. But if cytomegalovirus was the culprit, then why is the virus just now starting to cause AIDS after having been around for so long?
Other scientists blamed semen itself, since semen is known to lower immunity if it enters the bloodstream, but again, why would this be just starting to cause a problem?
ALAN WAS ADMITTED to Memorial on Nov. 16 and assigned to a private room on the 11th floor, overlooking an inner courtyard terrace. Though he still was Safai's patient, this part of Alan's care would be taken over by Dr. Susan Krown, an immunologist who was doing the principal research with interferon.
Alan's first day in the hospital was spent learning the routine and responding to the questions asked of him by the horde of doctors and nurses who came trooping through his room in small groups, huddled behind the senior person who did most of the talking.
The floor nurse came in to explain the daily routine and see if he had any special needs. A disembodied voice coming out of a wall speaker behind the bed boomed out and asked him if he had any dietary restrictions. He told the wall that he didn't, and the wall said, "Thank you. " More doctors came in during the afternoon, and each asked essentially the same questions, listened to his heart, looked into his eyes with a light instrument and then studied the purple spot on his thigh, the spot that remained after the other one had been taken for the biopsy.
Finally, there arrived a familiar face - Dr. Patricia Myskowski of Safai's staff - followed by a handful of white-coated people Alan recognized from the dermatology clinic. Dr. Myskowski told Alan that they probably would start the interferon the next day and he probably wouldn't be feeling very well afterward. The drug wouldn't be given by the floor nurse, Dr. Myskowski explained, but by a special immunology nurse, one of six nurses in the hospital who administered the drug and kept close tabs on the patients.
Dr. Myskowski answered a few of Alan's questions and then said good night, leaving him alone for the first time in the hospital. He looked out the window at the adjacent buildings, their lights coming on with the approaching darkness, and thought about all that had happened to him that day. The hospital was so big and the next few days loomed so frighteningly.
The door of Alan's room opened and a man, carrying flowers, walked in. Alan brightened, his face filling with a smile. It was Wilson, Alan's lover for the last four years. Alan filled Wilson in on all that had happened that day, and Wilson told Alan about all the people who were asking about him and who were wishing him well and who would be calling soon. A half-dozen friends had already called that day.
Alan told Wilson that there were three other AIDS victims on the floor. This also was the floor where their friend Jeff, also an AIDS victim, had died a few months earlier. Six of Alan's friends, including Jerry, had come down with AIDS . Two, including Jeff, were now dead, and in a few months Jerry would be dead as well. Alan had had sex with three of the victims, and had shared a house with two others.
The homosexual community was terrified by this disease, a disease that people outside the community were barely even aware of. Alan told Wilson that AIDS was going to be featured on the Phil Donahue show, and he was anxious to see how the public reacted to the program. Like many New York City homosexuals, Alan was afraid that the public was ignoring the disease because it involved homosexuals. Some people were even blaming homosexuals for the fact that the disease existed.
The two lovers talked into the night, but finally Wilson left. Sleep did not come easily to Alan that night. He was too nervous about what would happen to him the next day.
NEW YORK CITY has many different types of places where homosexual men can find sex, but nowhere is the hunting better than at the baths. Every major city has gay bathhouses and some, like New York, have several. One of the most famous is the St. Marks Baths, housed in a four-story historically designated building at 8th Street and Third Avenue in the East Village.
Outside, the building looks like any one of a dozen ill-kept structures in this poor section of the city. Inside, the lobby resembles a pawnshop, with heavy bars to protect the registration clerk and his wall of safe-deposit boxes for the valuables of customers.
It was a quiet weekday night a few months ago when Rodger McFarlane, the represenative of a gay group, went there with a reporter, who wanted to see these places that were so popular with homosexuals who got AIDS . The clerk stood silently and looked at the two customers who had just walked into the lobby. Behind him, the spools of a big tape recorder turned slowly, playing Pachelbel. Dressed in blue jeans and a tight fitting T-shirt, the clerk made up in silent efficiency for what he lacked in charm.
He didn't have to explain anything because his customers knew what was expected of them, and those who didn't had only to read the signs mounted above the registration desk. Money was given to him. It cost $6.75 a person, including a $2 deposit for each locker key. Neither smiling nor talking, the clerk returned the change, gave each man a towel and key and buzzed open the door.
Rows of lockers, thin and brightly colored, were to the left and up a short flight of steps. A small bar was to the right. It was still early, so only a handful of people were on the first floor. Down at the end of a dimly lighted hall was a trim young man, dressed only in a white towel. He stared at the newcomers and then turned away. Another man, equally young and trim and also dressed in a towel, sat at the bar, the only customer in the small room.
No one spoke. The only sounds were the music and the noise of the metal locker doors clanking open as the two newcomers hung up their street clothes. The lighting was subdued, and fanned out in such a way that only the bottoms of people were lit, while their heads remained in shadow. The reporter and Rodger, now dressed only in towels, went down to the basement, which housed the pool and steam room. "A lot of group sex goes on in there," Rodger said, looking into the the dark steam room, which was empty. Two men, one wearing a towel and the other nude, sat on ledges around the pool and stared at Rodger as he walked by, headed for the rooms upstairs.
Rodger, 28, was six-foot-six, with broad shoulders and sensitive eyes. He used to do very well in the bars and bathhouses before giving it up because it had come to seem so meaningless to him. Walking up narrow stairs painted black, Rodger went to the second floor, which, like the third and fourth floors, was a labyrinth of narrow hallways and little rooms. All told there were 150 cubicles on the three floors, each little room opening onto a hallway, lit only by the warehouse lights.
Rodger headed down one of the hallways. Another man came out of the shadows from the other direction. Hugging opposite sides of the hallway, they passed each other silently. In one of the cubicles, a man was lying on a cot in such a way that his naked backside was seductively displayed to all who passed. In the shadows of another cubicle, a man sat masturbating. Down the hall could be heard moaning. It came from behind any one of a dozen closed doors.
Rodger climbed another flight of stairs to the third floor, silently passing two more men who were coming down the stairs. The two men looked with interest at Rodger, but he neither spoke nor looked at them. Rodger said people didn't talk much in the baths. It wasn't necessary because the sex rituals were known to all. If you see someone who interests you, he said, you touch him. If he's not interested, he brushes your hand away and you go elsewhere. If he is interested, Rodger said, he acquiesces and you go further or he touches you back.
Soon you're in one of the cubicles and you're having sex - oral, anal, probably both. Another person may join you. You change positions. And then maybe it's on to another cubicle or the steam room for group sex or perhaps the bar for a drink and rest before finding another person and another cubicle. People stay for hours, Rodger said, frequently all night.
"I can't believe how quiet it is tonight," Rodger said, climbing to the roof and going outside. The roof was covered by a raised deck, which was used for sunbathing in the summer. The night air was cool, a refreshing contrast to the closed-in, humid environment of the floors below, but too cool to stay out in very long without clothes. No one else was on the roof.
"Do you think people are being scared off by the AIDS ? " Rodger was asked. He shook his head. "Someone told me that last weekend there was a line outside here just like there always is on weekends," he said, adding that men come with gym bags loaded down with belts and chains and lubricants for sexual variety.
Rodger made his way back down to the locker room, which was getting busier. Three more men had just come in and were standing naked, looking back and forth at each other without saying anything. One of them touched Rodger, but he pushed the man's hand away. Then he and the reporter got dressed and walked out.
Mozart was playing on the tape machine now, and five men were standing at the desk, waiting for the man in the tight fitting T-shirt to take their money. Two of them wore leather jackets, the type World War II bomber pilots used, two had polo shirts and the fifth wore a conservative, three-piece business suit and carried an attache case.
ALAN WAS AWAKENED by the early morning activity of the hospital, as the night shift cleaned up loose ends in preparation for the day staff. He was still tired, having slept only fitfully through the night, but he was too anxious to go back to sleep. So he got up. With the exception of feeling tired and the start of a slight cough, Alan felt fine physically.
Finally breakfast arrived. He ate it and waited some more. The door swung open and in came Dr. Krown, followed by three younger people in white coats. They talked for a bit, then she asked to look at Alan's spot, which he showed her. While the three other people looked at the spot, Dr. Krown warned Alan that he might feel sick after he got the interferon. Alan said he had been warned.
It was just as Dr. Krown was about to leave that Alan told her about the little bump on his nose. He said he had just become aware of it and, though it wasn't very large, he thought she should know. She looked at it for the longest while and then mumbled that it was interesting. She didn't, however, think that Alan should worry about it. The three other people looked at Alan's nose for a few moments, and then everyone followed Dr. Krown out the door. The phone rang and Alan picked it up.
"No, not yet," he told the caller. It was Jerry, who had been discharged the week before, and was now downstairs getting his daily interferon shot as an outpatient. "I'm just dreading it," Alan said. "I'm just not looking forward to it at all. " Jerry gave Alan a detailed description of what to expect with the interferon.
Patricia Telford, the immunology nurse, came in with Tylenol for Alan, who said goodbye to Jerry and hung up. Tylenol is given an hour before the interferon, Miss Telford said, to help keep the fever down. It was 9:30. Alan would get the interferon at 10:30.
She explained that he would get chills and a fever and it was possible that his blood pressure would first climb and then fall, but he shouldn't worry because she would be checking in on him every hour. When the chills began, she said, she would come back and stay with him. She left the room, and returned moments later with a tray of blood-sample vials. Again there were 15 containers with different colored tops. The doctors wanted to know exactly what Alan's blood was like just before he got the interferon.
Miss Telford filled the vials and left again. She reappeared exactly at 10:30, this time with a syringe and a couple of little bottles. It was the interferon. With a minimum of ceremony, she injected 36 million units of interferon into his left buttock. It took only a few seconds, and then Alan was back sitting up in bed, his arms crossed, looking at the wall oposite his bed. After all the fanfare, it was anticlimactic.
"Oh, well, I'm off and running," he said, picking up that morning's New York Times, which he had been too tense to read before getting the shot. Miss Telford left, came back a few minutes later with a blanket for the chills Alan would be getting, and then left again, saying that she would be back in an hour. The floor nurse came in. Without saying a word to Alan, she lifted up his wrist and stuck a small label on his name bracelet. "CAUTION KS/ AIDS ," it said.
A dermatologist from Safai's department came in. Alan told him about the bump on his nose. The young man looked at the bump, nodded and then examined Alan's bare feet, which were sticking out from under the sheet. He had a mild case of athlete's foot, which the dermatologist seemed more interested in. The dermatologist left. An hour after the shot, and every hour after that until late afternoon, Miss Telford came back and took his temperature and blood pressure. And Alan continued to feel fine.
Dr. Krown came back near the end of the day and talked with Alan for a bit. Just as she was walking out the door, Alan coughed. She turned and came back. She asked him about the cough. He told her that it was nothing, he had had it on and off for a while. She listened to his lungs, frowned and left. A little while later the floor doctor came in and told Alan that he would be going down for a pulmonary function test the next morning. They wanted to check out his lungs further.
The fever everyone had been predicting began about 5 p.m., but it was mild. Alan still felt well enough to have a pleasant conversation when Wilson arrived to talk about their respective days later that evening. Miss Telford had gone, but before leaving she had told Alan to call the floor nurse the moment the chills began. After a couple of hours, Wilson went home, and a little while later the chills began.
Alan's fever climbed to 103 degrees and he shivered a bit. As instructed, he called the nurse, who took his temperature and blood pressure, but it really wasn't as bad as Alan had expected. The fever broke by 10 o'clock, and then Alan felt much better.
Another major hurdle was past. Now Alan was free to worry about the pulmonary function test. He had read much too much not to know what this meant. Many Kaposi's victims go on to develop Pneumocystis carinii, a much more quickly fatal disease than Kaposi's. Most Pneumocystis victims are dead within a year. And usually the first signs of Pneumocystis are shortness of breath and a cough.
SHORTLY AFTER being admitted to the hospital, Alan received yellow flowers from his parents in North Carolina. They had offered to join him in New York, but Alan said it wouldn't be necessary unless something went wrong.
Alan realized that soon he would have to confront an issue that he had avoided all his adult life, talking to his parents about his homosexuality. They knew little about his life in New York City, and were totally unaware of all the parties and his house on Fire Island, that favorite gay vacation spot on Long Island, and the many times in the bookstore back rooms and all the other things that made his life in New York so different from his life in North Carolina.
Alan had told his parents that he had Kaposi's - without explaining that in young people this was a disease of gay men - and his parents in turn had told their friends about Alan's illness. No one there knew anything about Kaposi's, not even his father, who was a dentist, or his mother, who was a nurse. Their family doctor even had to look the disease up in a medical textbook, when they asked him about it. But now that AIDS was getting so much publicity, Alan was afraid that everyone in his small town would deduce that he was gay, whether his parents accepted the fact or not.
Alan wasn't alone in this dilemma. Beth Israel psychiatrist Stuart Nichols says that AIDS has forced many men to either admit their homosexuality to their families or conceal their illness. Any serious illness, he says, tends to isolate people at a time when they need emotional support most, but AIDS is particularly tragic in this way.
Nichols, who is gay himself, was reminded of this isolation when AIDS patients started turning up at Beth Israel. He volunteered to set up a support group for them, and began to hold weekly group meetings in Greenwich Village. Soon an average of 15 people were coming out each week. On occasion as many as 45 have shown up.
A renewed conflict over being gay and the fear of dying is a frequent topic at the meetings. These things are driving men from their friends and their social network, Nichols says. Gay AIDS victims are afraid of infecting their lovers, since the disease seems to be associated with sex. Conversely, since their own immunity is so low, they're afraid of getting an infection that will kill them.
"They have very few things to hang their hopes or their fears on," Nichols says. "They're so isolated and have no real guideposts to help them. . . . One of the things that happens is a resurgence of all their guilt about homosexuality. " Some even see the disease as retribution for having sinned by being gay.
Nichols said that many gay men have started to become more circumspect sexually, limiting their partners to a few friends or at least to a circle of disease-free people. Still, the bars and the bathhouses are doing as brisk a business as ever.
Nichols said the epidemic is a terrible tragedy, but some good is coming out of it. Many gay men, he said, are so afraid of getting AIDS that they are filling their lives with other activites, things that are more meaningful than unfeeling, mindless sex with annonymous partners. Until AIDS came along, he said, sex had been the primary focus of their lives, which had become a "celebration of sex. "
Reporting to the CDC an average lifetime total of 1,160 different sex partners, AIDS victims do seem to have focused their lives on sex. Certainly fast-lane gays such as this constitute a minority in the homosexual community, but just how small a minority is hard to say. Bruce Voeller, founder of the National Gay Task Force, estimates that less than 25 percent of gay men are so promiscuous.
ALAN WAS ALREADY awake and sitting in front the television set, waiting for the Donahue show to begin, when the nurse came in to see if he was ready to go downstairs for the pulmonary function test. He asked if he had to go right then; he had been waiting all week to see this show. She said she would check.
Donahue came on, gave his audience a brief rundown on the epidemic and introduced his guests: Larry Kramer, an author and founder of the Gay Men's Health Crisis (GMHC) in New York City; Philip Lanzaratta, an AIDS victim, and Dan William, a New York City physician with many gay patients. All three men were gay. The audience was mostly Midwestern women, since the show had been taped in Chicago.
Kramer, who helped found GMHC to deal with the AIDS crisis, said 17 of his friends had already died of AIDS . William said that the public needed to know about the disease. And Lanzaratta said that doctors had no idea how to treat AIDS and were experimenting with everything they had. "Each one of us is like a rat in a lab," he said.
Kramer said that the mortality rate for Kaposi's sarcoma was 45 percent. Alan coughed, but didn't react to the figure. Miss Telford came in with a styrofoam cup of coffee and sat on the edge of Alan's bed to watch. The other nurse came in and said the pulmonary function people didn't have to see him until 9:45. Alan smiled a thank you.
The latest AIDS statistics were flashed on the screen: 732 cases, 284 deaths. Kramer began to get angry and complained that the media and the rest of society seemed to be indifferent to AIDS . "When the gay community has a problem," he said, "it never gets enthusiastic establishment support. " He said that the media had been ignoring the subject even though AIDS was far more of a public health problem than Legionnaires' disease. Saying that AIDS is not a valuable political issue, Kramer said, "Can you imagine your friendly congressman getting up in Congress and saying I want to. . . . " The audience roared with laughter, drowning out the rest of the sentence.
"It's not as volatile as I thought it was going to be," Alan said. He thought Lanzaratta looked thin but strong. A trim, neatly dressed man with a small mustache, Lanzaratta had Kaposi's. Donahue asked Lanzaratta if he had a stable relationship. Lanzaratta said he had been living with his current lover for 16 years. Before getting sick, he said, he also had led a very active sex life, frequently going to the baths, back-room bars and parties where orgies were common.
William said gay men had to deal with the double anxiety of being gay in a disapproving world and dealing with a fatal illness. Close camera shots of the faces in the audience suggested concern and caring for the gay AIDS victims, and it seemed that Alan's concern about negative public reaction would be unfounded. But then Donahue started taking phone calls from the television audience.
The first caller was a woman; her voice was broadcast while the camera focused on the studio set. First she asked about oral and rectal sex, then she lashed out at Donahue. "It's disgusting," the woman said. "It's a disgusting disease. Why do we have to listen to this? It's basically their problem. "
"I knew this would happen," Alan said. Donahue replied that the homosexual community was being struck by a terrible disease and society couldn't turn its back on the problem. Sounding even angrier, the woman attacked homosexuals and said that they had no right to complain since they chose the way they lived and had to take the responsibility for the choice they made. A woman in the audience accused the caller of bringing in discrimination.
Alan laughed sarcastically. "I love it. I really don't understand why people are so scared about homosexuality. . . . People just get absolutely furious about it. We are an abomination unto the Lord, and legally we're a crime against nature. "
Lanzaratta tried to defend gays. "Gay people are just like everyone else," he said. The audience roarded with laughter. "Sexual preference is the person's own business," he said. A few people clapped. "Don't put us down," Kramer yelled. "There's a disease out there. It's going to hit us all soon. "
The nurse came into the room, pushing a wheelchair. "Time to go," she said to Alan.
ALAN WAS DEPRESSED when he was taken downstairs to have the pulmonary function test. The Donahue show had made him realize how little was known about the disease and how deadly it was. It also made him realize that he apparently had misunderstood Safai when the doctor told him that 25 percent of patients were responding to interferon. What Safai had meant was that the the drug had eliminated the Kaposi's in 25 percent of patients, but that the underlying immune defect had persisted - though he hoped that given enough time the interferon could enable the body's normal immunity to be restored.
An acquaintance Alan had made in the hospital saw him sitting sadly outside the testing laboratory and asked him what was happening. "They want to see if I have Pneumocystis," he said, explaining that it was a bad disease and had a 60 percent mortality rate. "I really don't want to have this test, but I realize I am at risk. "
The technician wheeled him into the testing room, told him to lie down on an examining table, and started going through Alan's medical file, which was easily an inch thick. Without talking much, she took a blood sample and then winded him by forcing him to walk quickly up and down a single step. She took measurements, had him breathe pure oxygen for 15 more minutes, took more blood, and then sent him back upstairs.
A little while later, word came to Alan in his room that the pulmonary function test looked suspicious. His blood was not taking up oxygen in normal quantities, suggesting that disease in the lungs was blocking gas flow. Now he would have to undergo a broncoscopy, a more complicated study in which tiny instruments attached to cables would be threaded into his lungs so little bits of lung tissue could be snipped off and studied.
For the rest of the day, Alan lay in bed, preoccupied with this test, which might provide him with even more fearful information. It looked as though it was going to be a difficult night to get through. Fortunately, Wilson was in unusually good form when he visited Alan that night.
They talked about the Donahue show and the angry woman and speculated on the reason for her anger. They talked about the mystery and possible explanations for why the disease tended to concentrate on the gay community. Wilson said he had just finished completing a 22-page questionnaire given to him by Jonathan Gold, an infectious disease doctor at Memorial, who was doing an epidemiologic study on AIDS . Four pages of questions - 36 questions in all - dealt with sex.
Alan asked Wilson what he answered to the question on estimated lifetime total of different sexual partners.
"I don't know," he said. "I think I wrote 300 plus. "
"Oh, come on! " Alan said, crossing his arms in stern disapproval.
"Well I did say plus," Wilson said defensively.
"Three summers on Fire Island," Alan said. "There's 100 right there alone. "
"I thought 300 might be low," Wilson replied. "That's why I went back and put a plus. " He said he didn't know how to compute a lifetime total. Alan said he should have taken a couple of typical months and multiplied. Wilson agreed that it was possible for him to have made a more accurate count, but he felt that the plus covered the matter.
Alan estimated that he probably was as promiscuous as the average, gay AIDS victim - with a lifetime total of perhaps 1,100 different sexual partners - but unlike many of the other AIDS victims he did not use drugs and generally steered clear of the bathhouses.
"Personally," Wilson said with a smile, "I think AIDS is caused by the Fire Island drinking water. " He thought about it for a moment. Alan said he couldn't understand why the lovers of AIDS victims rarely seemed to be getting the disease if it were true that it was sexually transmitted.
Shortly after Alan discovered the purple spots, Wilson noticed that his lymph glands had become swollen. When Dr. Gold, the infectious-disease specialist, heard of this from Alan, he immediately examined Wilson. So far Wilson has no other sign of trouble, and his T-cell ratio is fine, but Gold is continuing to see him regularly. Doctors think that chronically swollen glands - three months or longer - might be the first sign of AIDS in some patients.
"Sex," Wilson said, almost wistfully, "has become a pretty poison. "
ALAN FELT LIKE he was being sucked down into a long dark tunnel, and everything he did was propelling him only farther into it. Little purple spots turn out to signify a deadly disease. A slight cough sends him to the pulmonary function lab. These tests move him further along the chain to even more complicated tests.
Drugs that may or may not help his underlying disease take away his strength, and maybe he will never feel completely well again, ever. And always there is the danger that some small infection will kill him because his immunity no longer protects him.
Alan was lying on his back in his room when they came to get him for the broncoscopy. The room was dark because Alan couldn't be bothered raising the blinds. He was not in pain, but he was beginning to feel the impact of the interferon, which made him tired and weak, as though he had the flu.
The orderlies strapped him onto a litter and took him downstairs to the broncoscopy lab, where Dr. Diane Stover, a cardiopulmonary specialist, and her assistant, Dr. Anna O. S. Fels, were waiting. Dr. Fels prepared Alan by anesthetizing his nose and vocal chords so there would be neither pain nor a reflex gagging when they inserted the devices down his throat into his lungs. Then she quickly worked a tube one and a half feet down Alan's throat into the right lung, watching its progress through a fiber-optic device that could look around corners.
Though his vocal chords looked red from a sore throat, the lung seemed clear. They injected saline water through the tube into the tiny air sacs of the lungs and then retrieved the fluid, which now contained specimens of the lung tissue, for analysis. Then, pushing tiny forceps attached to a cable through the tube, Dr. Stover snipped off a little bit of lung tissue, which also was retrieved for analysis.
The test did not take much time. Alan was back in his room in less than an hour. Meanwhile Dr. Stover packed the specimens, which would be taken by Dr. Fels to five different laboratories for study. So far they had given this test to about 50 AIDS patients, and 22 of them had turned out to have Pneumocystis. More than half of the 22 had since died.
"This is the most devastating disease I have ever seen," Dr. Stover said, sticking a green "CAUTION AIDS /KS" sign onto one of the plastic bags. "You have a healthy, strong guy, and in only three months he looks like he's been in Dachau. " She stuck another label onto another bag and shook her head. ''It's a devastating disease. What if this gets into the general population? It's the only disease that permanently depresses the immunologic system. "
ALAN WAS ON the phone the next morning, talking to a friend, when Dr. Fels walked into his room with such a big smile that Alan hung up the phone immediately. "We shouldn't break out the champagne just yet," she said, ''but the lavage came back negative. "
Alan's mouth fell open. She explained that the biopsy results were still out, but the big test was the lavage and it was negative. Alan was overjoyed. Even before Dr. Fels came in, he had been feeling the strongest he had felt since starting the interferon, and now this news made him feel stronger yet. They couldn't explain Alan's poor showing on the pulmonary function test, Dr. Fels said, and they wanted him to come in to the hospital for a checkup in three weeks, but whatever he had was not Pneumocystis.
The phone rang, as it would be ringing throughout the day, and Alan immediately transmitted the good news. He would have to call his parents, who had said they would fly up if it was positive. And there was Wilson. He had to call Wilson.
Outside it was a beautiful sunny day - Indian summer just before Thanksgiving. Perhaps, Alan thought, his luck was turning for the better, and things would start to brighten after so many dark months.
He was discharged from the hospital a few days later, in time to have Thanksgiving at home with Wilson. He went back to work, and the people at the bank couldn't have been nicer. They arranged for him to get his daily interferon shots in the company dispensary so he wouldn't have to make the trip up to Memorial. His periodic examinations in the hospital all looked good. The lone spot seemed to be getting smaller. A biopsy of the bump on his nose indicated that it was Kaposi's, but it, too, began to disappear.
Though he didn't feel strong enough to sing in the Gay Men's Chorus, of which he was a member, he was strong enough to hear them sing in Carnegie Hall. And at Christmas, he went home to North Carolina and discussed his homosexuality.
His mother was in the kitchen cooking the holiday meal, and he and his father were in the living room. The day had been a pleasant one, and the mood seemed appropriate to broach the subject that he had been ignoring for so long.
"We need to have a long discussion about this disease," Alan said to his father, who suddenly became very attentive. "We need to talk about the type of people who get it. "
"You mean homosexuals?" his father said. Alan nodded and said that he was gay. "I think I figured that out a couple of years ago," his father said.
Instantly the heavy tension in the room lifted, and father and son started talking about something that had been on both their minds for some time but neither ever mentioned. Alan's father said he had suspected it after meeting Wilson and many of Alan's other friends from New York. His son seemed unusually close to them. And never did he talk about women friends.
Alan wanted to tell his mother. She had always liked Wilson and had frequently thanked him for being such a good friend to her son. Alan's father thought it would be better if he spoke to his mother first.
It turned out that Alan had to return home to New York before his father was able to do that, but still Alan felt good about the trip and having talked at least to his father. Yes, things seemed to be definitely brightening. Alan and Wilson were even able to get away on a long-anticipated trip to the Caribbean, which for a while they had thought they would have to cancel. So many good things were happening now that Alan was almost able to forget that he had AIDS.
WINTER BEGAN to turn to spring, and Alan's strength increased with the approach of warm weather. He was getting interferon shots only three times a week now instead of every day, and the spot on his nose had gone away. Slowly Alan allowed himself the luxury of thinking that perhaps the interferon was really curing him of AIDS , even though his T-cell ratio refused to improve.
Alan started going out more often, though he didn't risk sex, not wanting to endanger himself or other people. He was feeling so good, in fact, that in March he went back to the gym for the first time since he had gotten sick.
He went with Wilson with the idea of limbering up and perhaps even starting back on his regular exercise program. While lying on the mat, doing stretching exercises, he happened to look at the back of his right leg, and there it was. Another purple spot.
It was almost as though someone had kicked him in the stomach. He looked at the spot and touched it. It was about the size of his little fingernail and didn't hurt. He pressed it and felt firmness under the surface. It was just like the spots he had discovered so many months earlier while taking the shower.