And the Band Played On

by Randy Shilts

  June 12

  CLAUDE-BERNARD HOSPITAL, PARIS

  The gay man arrived at Dr. Willy Rozenbaum’s examining room, complaining of a severe weight loss and a shortness of breath. Again, Rozenbaum made the diagnosis of Pneumocystis, as baffled about the cause as he had been for the Portuguese cab driver, the Zairian airline employee, and the French woman who had spent time in Central Africa. That afternoon’s mail brought from the United States the MMWR describing the pneumonia outbreak in Los Angeles. This was related to the man he had seen this morning, Rozenbaum knew, and there was only one explanation. It couldn’t be anything in the environment; Los Angeles was virtually on the other side of the world. It had to be a new infectious agent.

  June 16

  CENTERS FOR DISEASE CONTROL HEPATITIS LABORATORIES, PHOENIX

  Although he was only thirty-eight, Dr. Don Francis was one of the most eminent experts on epidemics at the CDC, having been among the handful of epidemiologists who literally wiped smallpox off the face of the earth in the 1970s. In recent years he had worked with the gay community on the hepatitis vaccine project, which he was now wrapping up.

  Don called his old Harvard mentor, Myron Essex, as soon as he heard about how PCP and Kaposi’s sarcoma victims suffered from a strange depletion in T-lymphocytes. It was with Essex that Francis had studied the mechanisms of feline leukemia virus for his virology doctorate.

  “This is feline leukemia in people,” Francis began.

  Essex knew Francis had a penchant for quick conclusions stated in the most dramatic terms; he also knew that his former student had gained an international reputation for singular brilliance. After spending eight years studying feline leukemia, the major cause of cat deaths, Essex was more than casually interested in links between this disease and human disease. He and Francis were among the small minority of scientists who believed that viruses would one day be linked to cancer and other serious human ailments. Together, they had published eight articles on feline leukemia as well as a controversial piece suggesting that some human lymphomas, leukemias, and cancers of the immune system might be linked to viral infections. Essex settled back to listen to Francis’s logic.

  Cancer and immune suppression, Francis said. Both feline leukemia and this new gay disease were marked by a trail of opportunistic infections that seemed to take advantage of an immune system weakened by a primary infection. In cats, the infection was a leukemia virus that knocked out the cats’ immune systems and left them open to a number of cancers. Clearly, some similar virus was doing the same thing to these homosexual men, and they were getting cancer too. Secondly, feline leukemia has a long incubation period; this new disease must have long latency too, which is the only way it was killing people in three cities on both coasts before anybody even knew it existed.

  His years of battling epidemics in Africa, Asia, and America had imbued Francis with the idea that viruses were crafty little creatures constantly trying to outsmart humans in their bid for survival. Long latency periods were one of the most clever ways to thwart detection and extermination. Francis didn’t think the gay health problems were being caused by cytomegalovirus or the other familiar viruses under discussion. They had been around for years and hadn’t killed anybody. It was something new; it could even be a retrovirus, Francis said.

  Essex was intrigued, although he knew most scientists would consider Francis’s suggestion farfetched. As a subgroup of viruses, retroviruses were, at best, a quaint and exotic group of viruses. Last year, a National Cancer Institute researcher, Dr. Robert Gallo, had shown that a retrovirus caused a leukemia common in Japan, the first time any virus had been linked to a human cancer. That was something of a backward scientific affair, however. Gallo had first discovered the virus and then searched worldwide for a disease that it might cause. By chance, Japanese researchers were studying the T-cell leukemia, assuming it was a contagious cancer, but they hadn’t identified a viral culprit. Identifying Human T-cell Leukemia virus, or HTLV, as the cause, had forged a major scientific breakthrough in virology; it also had frightened scientists because of its long incubation period. Such a virus could be spread all over before it caused disease and anybody would even know it existed.

  Many scientists remained dubious about the future of retroviral research, however, and many still believed retroviruses to be animal bugs because virtually all of them were linked to diseases in chickens, pigs, or cats. Essex figured that this was wishful thinking. Francis’s idea, Essex thought, was a hypothesis that bore watching.

  Francis was already convinced. He quickly became the leading CDC proponent of the notion that a new virus that could be spread sexually was causing immune deficiencies in gay men.

  June 28

  SAN FRANCISCO

  Bill Kraus looked embarrassed by all the attention, but he obviously enjoyed the party Kico Govantes helped organize for his thirty-fourth birthday. Cleve Jones and Gwenn Craig and all his cronies from the Harvey Milk Club were there. Everybody toasted Bill with champagne before going downtown to march in the 1981 Gay Freedom Day Parade.

  The mood was’ more somber than in years past, veteran parade observers noted; there were no amusement park rides at Civic Center this year. The theme was “Front Line of Freedom,” a reference to the popular local idea that San Francisco was the front line of the nation’s gay movement and battle lines were shaping up between them and the new religious conservatism in the Reagan administration. The parade drew a throng of 250,000, a typical turnout for the annual foray; in New York City that afternoon, 50,000 marched in the gay parade, making the march one of the largest gay demonstrations ever held in Manhattan.

  A special issue of the San Francisco gay paper, The Sentinel, carried five paragraphs on gay pneumonia that day. More prominently featured was an editorial raising questions for a San Francisco gay community awash with its own gaudy mixture of insecurity and self-confidence. “What are the goals of the gay movement?” the editorial asked. “Where are we going?”

  July 1

  SAN FRANCISCO GENERAL HOSPITAL

  Struggling to stay awake through lonely nights as a postdoctoral intern at the University of Utah Hospital in Salt Lake City, Paul Volberding had sometimes watched the taillights of cars heading west on the freeway toward San Francisco. He had never been there, but he knew that’s where he would go once he finished his internship. He knew that as certainly as he had known for years that he was going to be a retrovirologist. Growing up near the Mayo Clinic, on a dairy farm in rural Minnesota, had long ago enchanted him with medicine. By high school, he found a refuge in lab work, experimenting with plant viruses. In college, the stability of the laboratory gave him a respite from the revolution happening on the radical University of Minnesota campus; he spent his hours away from the noise, intrigued by unseen bits of genetic information that could have such a devastating impact on a human being. It was in college that he heard about retroviruses, and he knew he would devote his life to trying to understand them.

  Paul Volberding would have been in bench research today if he hadn’t started meeting cancer patients in his residency. He fell in love with cancer patients. He loved the honesty that cut through all the superficial crap. In other parts of life, there was so much miscommunication. People said things they didn’t mean and heard things they really didn’t understand. That didn’t happen with cancer patients; there was nothing trivial in the talk. Paul noticed that the viruses that bring disease also seemed to bring out the best in people.

  After three years at the retrovirus lab at UCSF, Volberding was starting his dream job as chief of oncology at San Francisco General Hospital. He was young for such a position—thirty-one years old. He was nervous and excited and not sure what to think when the veteran cancer specialist slapped him on the back on his first day at work, July 1, and pointed toward an examining room.

  “There’s the next great disease waiting for you,” he said. “A patient with KS.”

  Volberding had never heard the term “KS”
before. He didn’t know what the old-timer was talking about. Volberding walked into the room and, for the first time, saw one of the people who would merge his interests in retroviruses and the terminally ill into a career that would consume much of his life.

  A friendly down-home accent identified the twenty-two-year-old patient as from the South. He was an attendant in a San Francisco bathhouse and had been admitted to the hospital a few days ago with diarrhea and weight loss; the Kaposi’s sarcoma diagnosis had been confirmed just the day before. Volberding had never seen anything like this in such a young patient. Emaciated and covered by lesions, the young man looked like a patient who was, perhaps, in the advanced stages of a stomach cancer. It was hard to look more advanced than this fellow, Volberding thought; he looked like someone who was going to die.

  The youth didn’t have many friends in San Francisco and lived in a lonely apartment in the seedy Tenderloin neighborhood. He was estranged from his family, and he didn’t understand why he had lost so much weight or where the purple spots had come from. He was frightened and isolated, dependent and needy. The sight of him left a memory with Volberding that stuck with him for years.

  Hearing that other cases of this strange cancer were appearing in New York, Volberding called Michael Lange at St. Luke’s-Roosevelt Hospital, and the pair compared notes about treatments. Volberding read all the papers in the medical libraries on Kaposi’s sarcoma and started the patient on the recommended chemotherapies. None worked. Volberding didn’t know what to do; none of the KS experts in the country knew what to do. In the months that followed, Volberding simply became a helpless witness to the young man’s excruciating and lonely death, the first of the hundreds to follow at San Francisco General Hospital. It truly was to be “the next great disease.”

  July 2

  UNIVERSITY OF CALIFORNIA, SAN FRANCISCO

  In his office above the UCSF Medical Center, Marcus Conant jotted a memo to the handful of other local specialists who had expressed an interest in the outbreak of Kaposi’s sarcoma. He now knew of six KS cases in San Francisco; because it was a gay mecca, he figured the city would have more as the months developed.

  “If Alvin Friedman-Kien is correct, we should see 40-50 cases of Kaposi’s sarcoma in males here in the next 12-18 months,” Conant wrote. “Half of these patients will have fulminant disease and may die. While planning is contrary to our national genius, I feel that it may be wise to put together a multidisciplinary task force to decide how we will investigate this disease as cases are referred here to us.”

  At the Faculty Club a few days later, Conant proposed a KS clinic. The doctors agreed it was a rational way to proceed. The centralization of local cases would both aid physicians who were trying to understand the baffling phenomenon and help patients secure the most expert care. Within weeks the clinic was established, if for no other reason than that it seemed the most intelligent medical solution to a medical problem. Perhaps, Conant subsequently reflected, that’s why it took four years before hardly any other medical institution in the United States began working in earnest on their own clinic. The new epidemic would rarely be dealt with as simply a medical problem.

  The first official report on the outbreak of Kaposi’s sarcoma was released in the MMWR of July 4, 1981, five years to the day after the tall ships from fifty-five nations had amassed in New York Harbor for the Bicentennial celebration. The title of the report was “Kaposi’s Sarcoma and Pneumocystis Pneumonia Among Homosexual Men—New York City and California.” In the driest possible prose, the report outlined the common symptoms of the KS patients, twenty of whom lived in New York City and six in California. Four of the KS patients had suffered a bout with Pneumocystis; others had suffered from severe herpes, candidiasis, cryptococcal meningitis, and toxoplasmosis. The report also announced ten new cases of PCP among gay men, including six in the San Francisco Bay Area.

  “The occurrence of this number of KS cases during a 30-month period among young, homosexual men is considered highly unusual,” the report noted. “No previous association between KS and sexual preference has been reported. The fulminant clinical course reported in many of these patients also differs from that classically described for elderly persons…. That 10 new cases of Pneumocystis pneumonia have been identified in homosexual men suggests that the 5 previously reported cases were not an isolated phenomenon. In addition, CDC has a report of 4 homosexual men in NYC who developed severe, progressive, perianal herpes simplex infections and had evidence of cellular immunodeficiencies. Three died, 1 with systemic CMV infection…. It is not clear if or how the clustering of KS, pneumocystis, and other serious diseases in homosexual men is related.”

  Days before the publication, Dr. Paul Weisner, chief of the CDC’s sexually transmitted disease section, collared CDC director Dr. William Foege for the first of many conversations about getting more money for the harried KSOI Task Force. “I think this is bigger than we think,” he said.

  The day the MMWR was released, Jack Nau was admitted to St. Vincent’s Hospital in Greenwich Village with strange pains and a numbness in his legs. The doctors diagnosed Jack’s disease as a rare kind of lymph cancer that usually strikes children.

  The day after Jack’s admission to the hospital, Paul Popham read about Kaposi’s sarcoma in The New York Times. He had broken up with Jack a month ago, but he still cared for his former lover. He immediately sensed a connection between the rare cancer that had hit Jack and the skin cancer that had killed his best friend, Rick Wellikoff, six months ago. Including Rick and Nick, Jack was the third guy from the Fire Island house on Ocean Walk diagnosed with a bizarre disease.

  July 5

  1040 ASHBURY STREET, SAN FRANCISCO

  Fuck the doctors, Ken Home thought, I’m not going back.

  Outside his window, the purple twilight sky faded to black, and headlights snaked their way across the Golden Gate Bridge. Ken’s pet cockatiel was pacing nervously around its cage. Ken’s stomach rose briefly, but he forced the foul taste back. Seven days before, he had been released from his third stay at St. Francis Hospital. They said he had some kind of pneumonia that was just as strange as his skin cancer, and now there was talk that this was going on in L.A. and New York too. He was weak, and he felt like he was going to throw up again. But he couldn’t call Jim Groundwater because the doctor would want to put him back in the hospital, where they would poke, prod, and test him, and tell him again that he was very sick and not tell him why. The phone was ringing, long, blasting shrieks that split his head, and he stumbled as he started walking toward the sound.

  It was nearly midnight when Ken’s sister let herself into the apartment. She found Ken lying on the floor of his bedroom, his lip bloodied where he had hit it on the bedside table as he’d fallen to the floor. She touched his forehead; he felt hot.

  In the emergency room, Ken refused to talk to the doctors, staring vacantly away while they took his pulse and blood pressure. Once in bed, he lapsed into a demented babbling confusion, occasionally screaming out. Nurses rushed busily in and out of his room. At times, he stirred and pleaded and then fell silent.

  “Please,” the nurses heard him cry from his darkened room. “Please. Please. Please.”

  The MMWR announcement about KS received a one-day infusion of press attention, garnering the obligatory stories in The New York Times and the Los Angeles Times. This ensured that all the wires would carry the story into most of the nation’s major newspapers. The writing was crafted so as not to offend and not to panic. The notion that there might be a new infectious agent was downplayed in favor of hypotheses involving some environmental factor, mainly poppers, or some new strain of an old virus, particularly the cytomegalovirus that the MMWR discussed in detail. This day in the limelight, however, was the most attention the new epidemic would receive for the next year. After the first week of July, the outbreak faded from newsprint and became an item of interest largely to gay men.

  In San Francisco, Bill Kraus attributed the reports of
the new diseases to anti-gay bias in the press. Reporters never talked about the constructive things the gay community did, he thought, but let a few people get sick and they’re all over it.

  Cleve Jones clipped out the wire story that appeared in the morning Chronicle and pinned it to his office bulletin board under his handwritten headline: “Just when things were looking up.”

  TORONTO

  If Gaetan Dugas had an obstacle, he decided on the quickest way to overcome it and confidently set about the task. When he resolved to get out of the hairdressing business and be an airline steward, he studied the requirements carefully and got to work. Air Canada required that flight attendants be bilingual, so Dugas, who had never lived outside the parochial confines of the French-speaking Quebecois, moved to Vancouver without knowing a word of English. Immersed in the new language, he quickly acquired the skill necessary for the job.

  When he saw the first story about Kaposi’s sarcoma, he researched the best American centers for treatment and made a beeline for New York University, where Alvin Friedman-Kien and Linda Laubenstein were seeing the most KS patients. He was going to beat this, he told friends. His Canadian doctors hadn’t done anything for him. Within days, he had lined up an appointment at NYU.

  Paul Popham was leaving the Trilogy Restaurant in Greenwich Village when he thought he recognized Gaetan Dugas walking down Christopher Street. God, that guy is handsome, Paul thought. He couldn’t blame Jack Nau for picking him up last Halloween. The pair had also spent a few weekends together after that, Paul knew.

  “Jack’s at St. Vincent’s Hospital,” Paul said. “I’m sure he’d like to see you.”

  Gaetan smiled and chatted but didn’t mention why he was in town.