And the Band Played On

  The proceeds of the weekend’s fund-raising totaled $124. Paul had never thought about how frivolous people could be. He wondered what it would mean for the future, when more people were dying.

  Days after the Labor Day fiasco, Jack Nau died at St. Vincent’s Hospital. He hadn’t left the institution since he was hospitalized on Independence Day, and he had suffered the excruciating awful demise that dramatically informed doctors of how grisly a disease this gay syndrome was.

  Paul Popham felt a certain hollowness when he learned Jack had died. He had loved Jack once, and now, like Rick and Nick, Jack was dead.

  Later, it crossed Paul’s mind that he’d have to tell Gaetan Dugas about Jack the next time he ran into him.

  10

  GOLF COURSES OF SCIENCE

  September 15, 1981

  NATIONAL INSTITUTES OF HEALTH, BETHESDA, MARYLAND

  The National Institutes of Health sprawls over 306 acres of Maryland hills, ten miles northwest of Washington, out on Rockville Turnpike. Various disease vogues and congressional initiatives had spurred proliferation of the institutes to a $4-billion-a-year enterprise that, by 1981, included the National Institute for Allergy and Infectious Diseases, the National Heart, Lung and Blood Institute, and various other institutes for eye, dental, and neurological research. The most prestigious institute is the National Cancer Institute. Unlike the other five institutes, the NCI is largely autonomous from the NIH director, with its chieftains reporting directly to the Assistant Secretary for Health. With a $1 billion annual budget, the NCI has the most lavish funding of any health research organization in the Western world.

  The stone baronial mansions for the NIH director and the directors of the most eminent of the institutes stand on grassy knolls, like the stately campus homes of college presidents. That’s what they like to call the NIH grounds, a campus. Here, removed from the demands of commerce, scientists are given the freedom to undertake undirected research. Pure science. That means nobody can tell them what to do. The scientists follow their own interests, and, it is hoped, they will stumble across discoveries that will benefit humankind.

  The goal is thoroughly academic, but the rolling green hills of the NIH complex and the gray-haired scientists strolling at a leisurely pace also lend to the NIH the ambience of a golf course. It is a big, relaxed club where only the elite gain entrance and there isn’t much need to hurry about anything.

  The lack of urgency was the most striking aspect of the conference on Kaposi’s sarcoma and opportunistic infections called by the National Cancer Institute for Tuesday, September 15. About fifty leading clinicians treating the problem—people like Michael Gottlieb from UCLA, Linda Laubenstein from NYU, and Marc Conant from UCSF—had flown into Washington with high expectations. Finally, the “big boys” were getting into the action. The involvement of the Centers for Disease Control was reassuring, but, everyone knew, the CDC provided only the shock troops for epidemics. As a rapid deployment force, they could be relied upon to pounce on a crisis and establish a beachhead, but it was the National Cancer Institute, with its older hands and three times the money of the CDC, that could bring in the heavy artillery.

  With more than 120 cases now reported nationally and still no explanation for the patients’ strange immune deficiencies, it was increasingly clear to the clinicians gathered in Bethesda that an investigation into this outbreak could become a long haul, requiring substantial NCI grants. Rumors circulated that the conference was indeed a prelude to the first extramural NIH research funding on the cancer. As the key figures among the handful working on the outbreak in America, the participants knew they would be the most likely recipients of such an accelerated granting process.

  Alvin Friedman-Kien presented the epidemiological work he had recently submitted for publication, pouring out everything he had learned about the deadly new disease in the grueling five months since that first gay man with Kaposi’s sarcoma walked into his office. Later, NCI’s representatives took the stage. Those clinicians who were privileged to attend the briefing had already been made to understand that this was not a discussion session, so they sat dumbfounded while the NCI experts started talking about KS in Africa.

  The experts explained the intricacies of the African disease and gave prescriptions on how it should be treated. There was little talk about the immune system, no interest in the relationship between KS and Pneumocystis, and scant discussion about possible viral causes or, for that matter, of any of the possible causes. There were just pat lectures on how doctors treated KS in Africa. Use radiation or aggressive chemotherapy on these patients, the NCI doctors said. That’s what works. They didn’t seem much interested in the suggestion of one New York clinician that there might be problems in treating immune-suppressed patients with therapies that are known to devastate the immune system. Thus the NCI gave its seminar and then pronounced the day a success.

  Michael Gottlieb was stunned by all the talk of KS among the Bantus. It was as if nobody had told these eminent NCI researchers that benign KS in Africa seemed to bear little resemblance to the vicious skin cancer that could kill American patients. He had hoped for a plan for a multicenter study of the new disease and treatment experiments coordinated with the drug industry and physicians across the country. Instead, the only substantial development at this meeting was a vague NCI assurance that it would accept proposals for federal funding of research at some point in the future.

  Knowing the delays that can encumber federal research grants, Gottlieb left the meeting crestfallen. Science was not mobilizing to fight a scourge that he felt was most certainly an infectious disease with the potential to spread across America. He had spent much of the summer methodically putting together a paper on cases of Pneumocystis carinii pneumonia for the New England Journal of Medicine. The periodical, however, did not seem overly enthusiastic about rushing the piece into print, sending it back to Gottlieb for this or that correction. The article, the first full treatment of gay pneumonia in a scientific journal, would not be published until December, more than six months after Gottlieb’s first report in MMWR.

  The NCI conference fueled Gottlieb’s suspicion that no one cared because it was homosexuals who were dying. Nobody came out and said it was all right for gays to drop dead; it was just that homosexuals didn’t seem to warrant the kind of urgent concern another set of victims would engender. Scientists didn’t care, because there was little glory, fame, and funding to be had in this field; there wasn’t likely to be money or prestige as long as the newspapers ignored the outbreak, and the press didn’t like writing about homosexuals. So nobody cared, and all Michael Gottlieb could do was return to Los Angeles to preside over more deaths.

  Jim Curran was not as surprised as the others. He had expected the NCI people to talk about cancer, and not the more basic problem of immune suppression that obviously was the key factor in the epidemic. Many of the federal cancer researchers, he knew, simply would not believe the CDC’s assertion that the new appearances of Kaposi’s sarcoma and Pneumocystis were even related. In the case updates Curran had forwarded to the NCI, he had created a special statistical category of the epidemic’s casualties to address this, separating the cases by people with KS, others with PCP, and the growing numbers who had both KS and PCP.

  Still, Curran knew that, at best, the NIH doctors had a condescending attitude toward the younger hotshots at the CDC. Curran had yet to interest anybody at the NIH in research in the gay diseases, and of course, no scientists in that land of undirected research could be ordered to work on the outbreak. All Curran could do was keep plodding up to Bethesda and hope somebody would catch on to the serious nature of what was happening. Maybe the case-control study would convince them, he thought.

  UNIVERSITY OF CALIFORNIA, SAN FRANCISCO

  The young parents were frantic. Their other child had been normal, what was the matter with their baby boy? They knew, of course, that his first months had been difficult, after the series of transfusions to alter his Rh
factor. But now he was seven months old and he still kept getting sick. He suffered from candidiasis and an ear infection that didn’t respond to antibiotics. The child’s immunologists could tell the baby was suffering from some kind of immune dysfunction, but the pattern didn’t fit the profile of babies born with congenital immune impairment.

  Meanwhile, in another doctor’s office in early October, a forty-seven-year-old man was complaining of swollen lymph nodes. He seemed tired all the time and was losing weight, probably because he just didn’t feel like eating. Scarier to him was the problem with his eye—his retina had clouded over for no apparent reason. He had always been healthy before, his doctors noted. He was even a regular blood donor and had given as recently as March, when his blood was transfused into the baby now hospitalized at the UC Med Center.

  October 1981

  THE TENDERLOIN DISTRICT, SAN FRANCISCO

  The gay desk clerk grew more curious with each handsome young man who came to ask for Mary Guinan’s room number. It didn’t help when a maid mentioned that she had found a bloodstained bed sheet in the room of the pretty blond doctor from Atlanta.

  The $75-a-day government limit on expenses had forced Guinan and Harold Jaffe into a seedy hotel on the fringes of San Francisco’s Tenderloin, the city’s highest-crime neighborhood. The desk clerk seemed reassured when Guinan said that she and Harold Jaffe were doing a study on gay cancer, and the clerk even politely told Guinan where she could go to buy new clothes when all her garments were stolen from a laundromat. For the rest of her stay, Guinan couldn’t get over the idea that somebody out there was walking the streets in her underwear.

  The case-control study, however, was proving to be an endurance test for everybody. During grueling sixteen-hour days, CDC doctors interviewed 75 percent of the living patients in the United States. The task force had spent the summer piecing together the form, sixty-two questions on twenty-two pages, that covered every conceivable behavior and exposure that might be involved in the epidemic, right down to what plants, pets, cleaning compounds, and photo chemicals were around the house. In an effort to cross-match for every aspect of the cases’ lives, four controls were selected for each patient. One was a heterosexual of comparable age and background; another was a gay man from a venereal disease clinic who, tending toward the more sexually active side, would match sexual behaviors; another was a gay man from a private doctor’s practice; and still another gay control would be a patient’s friend with whom he had not had sex. This last category proved the most difficult to fill since it seemed that just about every friend of a patient was also somebody the patient had once made love to, usually as a prelude to a platonic relationship. That was simply how you tended to meet other gay men in San Francisco and New York.

  The CDC staffers could tell gay from straight controls by the way they reacted to the questions about every aspect of their intimate sexual lives. Heterosexuals seemed offended at queries about the preferred sexual techniques, while gay interviewees chatted endlessly about them. One gay man nipped out a pocket calculator to estimate his lifetime sexual contacts.

  The nonchalance with which doctors handled blood samples drawn from each participant would later give them nightmares. Nobody used gloves as they drew serum from patient’s arms. The infectious agent talk was, after all, a hypothesis. Every day, however, the conviction settled deeper among the CDC doctors that whatever was causing this syndrome, it was not something they could see or tabulate on their neat questionnaires. The only factors that seemed to distinguish cases from controls was the number of sexual partners, the incidence of venereal disease, and attendance at gay bathhouses, which of course was the behavior that made possible large numbers of sexual partners. Maybe the computer analysis of all the detailed questions would turn up something, but the evidence for a new and deadly viral disease was becoming incontrovertible for researchers like Mary Guinan.

  Guinan mentioned her fears to Marc Conant over dinner one night and was surprised to find such a sympathetic ear. She was used to being dismissed as a hysteric when she got on the subject of viral agents and pandemic spreads. This guy has a perfectly clear view of what’s happening, she thought, although she was unnerved by his own projections of what a sexually transmitted killer disease might mean to San Francisco.

  If we don’t move fast, Conant said, thousands of people will die in this city alone. Playing in the fast lane of the freeway had merely ensured that the patients they saw would get run over first. If the virus had a long incubation period and was already widespread, it had already made it to the lesser traveled avenues of gay life, Conant warned.

  Back in Atlanta, Mary Guinan was assigned to review all those cases who claimed to be heterosexual. This was the most problematic element the case-control study had uncovered. Some patients apparently were not gay, though they did admit to being heroin users. Unfortunately, most of these addicts were dead by the time the CDC got to them, because they tended to suffer not from the slower homicide of KS but from the quick kill of Pneumocystis. Family members of dead patients were notoriously unreliable in confirming a victim’s heterosexuality, so intravenous drug use could not be called a risk until more direct interviews established it.

  Although the growing evidence for a new infectious disease startled the Kaposi’s Sarcoma and Opportunistic Infections Task Force members, not everybody at the CDC was that excited over the cancer and pneumonia outbreaks. Many of the old hands were convinced that exposure to some toxic chemical had occurred, that it would not be repeated, and the disease would fade out as mysteriously as it had faded in. Maybe five years later, they’d figure out what had happened; for now, this was an interesting oddity that, ultimately, was not very important.

  UNIVERSITY OF CALIFORNIA, SAN FRANCISCO

  Marc Conant was always scheming to get other UC specialists interested in the “gay plague,” as the gay press was ignominiously calling it, and a chance encounter at the melanoma clinic with Paul Volberding, the new cancer chief from San Francisco General Hospital, seemed particularly fortuitous. Conant saw in Volberding just the kind of doctor that would be needed in the difficult times ahead. Volberding was not trapped in some rigid specialization and was young enough not to be burdened by anti-gay biases that might cloud his scientific and medical judgments. When Volberding mentioned that he thought KS was a particularly interesting tumor, Conant suggested they visit a patient at UCSF, one that might prefigure the shape of things to come in the epidemic.

  Simon Guzman tried to smile for the handsome young doctor who walked into his room with the familiar and reassuring form of Marc Conant. A native of Mexico, Simon did not speak English well, but Volberding easily recognized him as yet another nice young gay man who appeared to be on a rapid course to a painful and early death. There were, of course, the lesions of Kaposi’s sarcoma, but there was also an unrelenting diarrhea and herpes destroying the young man’s body. Other infections remained undiagnosed, Conant confided to Volberding. Something was ravaging the man’s gut, but they couldn’t figure out what.

  Volberding recalled the helpless young man he had met on his first day at San Francisco General, and promised Conant that, yes, he too would sign on to work with these strange new diseases in the clinic Conant was organizing. Conant was reassured to have the resources of the city’s largest hospital behind him, as well as the nationally prominent UCSF Medical Center. Within weeks, he had appropriated several rooms used as nighttime sleeping quarters for interns, and the nation’s first Kaposi’s sarcoma clinic was established. Doctors from throughout northern California began referring their cases to Conant, ensuring the best treatment, study, and surveillance of the new disease. Conant would handle the dermatology and academic politicking, and Volberding would treat the patients at General.

  Another young assistant professor at UCSF, Donald Abrams, also signed on at the hospital with his own agenda. Since his residency at local hospitals in the late 1970s, he had been studying the strange swelling of lymph nodes among gay
patients. Already, one of these patients, a friend, had developed a lymph cancer, and another had come down with a strange meningitis. Abrams was convinced these lymph node problems were somehow related to the new diseases. In Abrams, Conant had found another doctor willing to set aside the paper writing and bench work of academic advancement in favor of trying to stop the new disease.

  These early efforts, of course, were all conducted with free time pilfered from various specialists around the hilltop campus and financed in pan from the earnings of Conant’s private dermatological practice. But the federal money was coming, Conant told himself. It had been promised in Bethesda in September. Surely when they saw how serious this was, the government would pull out the stops.

  November 1981

  NATIONAL CANCER INSTITUTE, BETHESDA

  Jim Goedert mentioned his nitrite inhalant study to Dr. Bob Biggar, a staffer at the Environmental Epidemiology Branch of the National Cancer Institute, housed in an inconspicuous office building a few miles away from the major NCI offices in the rolling hills of the National Institutes of Health campus. Goedert’s two KS patients piqued Biggar’s interest in the new epidemic. Biggar had spent years in Africa and recognized Kaposi’s sarcoma as one of the most widespread cancers on that continent. Still, he doubted the theory of poppers as the cause. There was nothing new about nitrite inhalant use in the gay community. Besides, a disease caused by a social phenomenon followed a gradual curve, increasing slowly as the behavior trend caught on. New reports of KS and PCP were coming into the CDC on an exponential curve. That was the way infectious diseases spread, increasing dramatically as the new infectious agent worked its way through the population. There had to be another way to go after this, Biggar thought, and as he plotted a course for study, his thoughts drifted toward Denmark.