And the Band Played On

by Randy Shilts

  —ALBERT CAMUS,

  The Plague

  12

  ENEMY TIME

  January 1982

  CENTERS FOR DISEASE CONTROL, ATLANTA

  Bruce Evatt enjoyed his work with hemophiliacs, and his lifetime research into the bleeding disorder had long ago made him the resident expert on hemophilia at the Centers for Disease Control. The disorder, which had plagued generations of European royalty, was determined by the hereditary information of just one molecule. Orders for this molecule’s construction passed in genetic code from mother to son; the molecule determined whether or not the son’s blood would clot to stop bleeding. Hemophiliac sons lacked that ability, hence the name of their disorder, hemophilia, “love of blood.” Beyond the fascination with this molecule, Evatt found that hemophiliacs were simply a joy to work with. They were an intelligent, well-informed group who, in their lifetime, had experienced a scientific breakthrough that added decades to their typical life expectancy.

  The invention of Factor VIII, a substance that, when injected, helped their blood to clot normally, had revolutionized thinking about longevity for America’s 20,000 hemophiliacs. Before Factor VIII, a hemophiliac could expect two, maybe three, decades of a life crowded with visits to the hospital for voluminous transfusions. All the transfusions could do, however, was replace lost blood. When injected into the blood, Factor VIII, a clotting factor concentrated from thousands of blood donors, gave the necessary components that allowed the hemophiliac’s blood to clot itself. The discovery gave the promise of a reasonably normal life span.

  Bruce Evatt relished the optimism hemophiliacs shared. They organized, lobbied for research funding, and eagerly worked to improve their lot, not like people with cancer or chronic diseases who in despair just turned over and died.

  Evatt’s regard for hemophiliacs is what made the phone call from Florida so troubling in the first days of 1982. A Miami physician was convinced that Factor VIII had killed his patient, an aging hemophiliac who had died of Pneumocystis a few months ago. Couldn’t the Pneumocystis protozoa have been transmitted in the clotting substance that his patient injected?

  Evatt assured the doctor that the filtering process during Factor VIII preparation prevented the transmission of bacteria and protozoa. Of course, smaller microbes, like viruses, could make it through the filtering, giving hemophiliacs an inordinately high rate of, say, hepatitis B. But the Pneumocystis bug was big enough to be caught by the filters. Evatt’s careful speech exuded an aura of kindliness; it was difficult not to believe his reassurance.

  Once off the phone, however, Evatt’s face folded downward toward the despairing thoughts he had been trying to hold off. Already, CDC staffers like Mary Guinan and Don Francis were predicting cases of gay pneumonia in hemophiliacs and blood transfusion recipients. This could not only be the first such case but it could provide some evidence that a virus was indeed responsible for the epidemic of immune deficiency among gay men. Evatt called the Food and Drug Administration, which has authority over blood products, to see whether they had heard of any similar problems. He also checked with the well-organized network of hemophiliac groups in case they had heard any reports of similar cases. None. Nor did Sandra Ford’s records turn up any pentamidine orders for hemophiliac patients.

  The Florida case itself was problematical. Although a biopsy did confirm the Pneumocystis, the man’s death made it impossible to go for any more precise immune assay. Also, the doctors had made no autopsy, leaving the possibility that some undiagnosed tumor or lymph cancer had caused the immune suppression necessary for the pneumonia to take root.

  Harold Jaffe of the Kaposi’s Sarcoma and Opportunistic Infections Task Force explained the problems to CDC Director Bill Foege. An old hand at epidemiology, Foege appreciated the gravity of the case, not only for hemophiliacs and blood transfusion recipients but also for opening the way to finally nailing down something as the cause of the epidemic, even if it were only a generic label like virus. However, he knew there were too many variables.

  “If it’s real, there’ll be another one,” he told Jaffe. “And then we’ll know.”

  Evatt told Sandy Ford to be alert for any pentamidine orders that might list hemophilia as an underlying medical condition, and the uneasy months of waiting began.

  COPENHAGEN

  Dr. Ib Bygbjerg had been back from Zaire for more than four years now, having returned in time to see his friend Grethe Rask die in late 1977. By early 1982, everybody in the hospital circuit was talking about the new diseases among gay men. Already, an American expert from the National Cancer Institute had been to Denmark to research the diseases. This must be something big; Danish scientists were rushing their first papers into print so they could beat out any NCI publication on the Aarhus studies.

  As a tropical disease specialist, Bygbjerg had been called in late last year to treat his first case; before long, he was seeing them all, because the Rigshospitalet had already gained a reputation for its immunology work. As Bygbjerg, now thirty-six, studied the third Danish man to suffer from the strange gay syndrome, he was struck by a sense of déjà vu. This was so African. Here was a man whose intestines were being sucked dry by incorrigible amebic parasites, just like some African bushman. And then there’s this Kaposi’s sarcoma, another disease he had seen only in Africa. There was an eerie feeling too when Bygbjerg’s first KS patient died of Pneumocystis, and then another died of the same pneumonia. It was the protozoa Bygbjerg had wanted to study after the death of his friend Grethe, but his professors had dissuaded him with the assurance that there was no future in researching such a rare disease.

  Instead, Bygbjerg had studied lymphocytes. He was glad he had, since the young men now falling ill with KS and PCP clearly had problems with their lymphocytes. The lymphocytes might even be a key to understanding what was causing their ailments, Bygbjerg thought.

  But he couldn’t get the notion out of his head that what was killing these men was somehow related to what had killed Grethe Rask. He still considered himself sworn to that promise he had made at the time of her death, that before he died he would understand what had taken her life. The Pneumocystis was a link between what was happening now and what had happened then, during the Feast of the Hearts and on the barren Jutland heath.

  Bygbjerg approached his department chairman for authorization to publish a medical journal story about Grethe’s death; maybe it was the piece to a larger puzzle that would help someone else see the full picture. For all they knew, it may have been in her body that some deadly new virus made its European debut.

  Bygbjerg’s superiors laughed off the eager young scientist’s impulse to publish. You see tropical disease everywhere; you see Africa everywhere, they told him. Besides, they added, how could a disease of homosexual men with all those hundreds of sexual partners possibly be related to anything Grethe Rask might have? After all, as one friend pointed out later, the respected Dr. Rask was a lesbian who had never made any secret of her sexual orientation.

  PARIS

  The French study group, which Jacques Leibowitch and Willy Rozenbaum convened in early 1982, hadn’t set out to discover the cause of the mysterious and still-unchristened epidemic. At first, they simply wanted to track the new diseases as they made their splashy entrances in various hospitals. Rozenbaum already had approached Parisian gay doctors but found that they simply did not believe that the new maladies were anything but some new plot to drive them underground. “Let us die,” they told him. Rozenbaum decided to start his own epidemiological studies out of Claude-Bernard Hospital on the outskirts of Paris. He had set up his own hotline and would see as many patients as he could squeeze into a day. An unemployed epidemiologist looking for a gig, Jean Baptiste-Brunet, volunteered to follow the African cases in Paris. Leibowitch would keep in touch with other doctors around town.

  What they had to offer, they figured, was a perspective unencumbered by America’s preoccupation with divining who was homosexual and who wasn’t. Americ
an scientists thought it odd to view the new epidemic as an African disease, but the French thought it unusual to view it as a homosexual disease. This was a disease that simply struck people, and it had to come from somewhere. The Parisian cases dated back three years before the first American patients, pointing toward an African genesis. Throughout northern Europe, evidence was rapidly accumulating for this theory. Belgian doctors also had been seeing Pneumocystis cases from such countries as Zaire and Uganda for four years.

  January 6

  CENTERS FOR DISEASE CONTROL HEPATITIS LABORATORIES, PHOENIX

  The horrible fever had swept seemingly from nowhere into the border region between Zaire and Sudan, on the fetid banks of the Ebola River. The disease was a blood-borne virus, wickedly spreading both through sexual intercourse, because infected lymphocytes were in victims’ semen, and through the sharing of needles in local bush-hospitals. The absence of modern precautions to protect doctors also spread the blood-borne disease among medical personnel through routes unimaginable in more civilized countries.

  During this 1976 outbreak, local Danish doctors in the remote hospitals in Zaire, people like lb Bygbjerg and Grethe Rask, were impressed with the vigor with which the team from the World Health Organization (WHO) had moved to stamp out this deadly disease that became known as Ebola Fever. When it became obvious that the disease was spreading through autopsies and ritual contact with corpses during the funerary process, Dr. Don Francis, on loan to the World Health Organization from the CDC, had simply banned local rituals and unceremoniously burned the corpses. Infected survivors were removed from the community and quarantined until it was clear that they could no longer spread the fever. Within weeks, the disease disappeared as mysteriously as it had come. The tribespeople were furious that their millennia-old rituals had been forbidden by these arrogant young doctors from other continents. The wounded anger twisted their faces.

  On this day, as he contemplated the epidemic of immune deficiency, Don Francis could not escape the memories of the horrible Ebola Fever outbreak. The memories became particularly sharp when Francis received the Wednesday morning phone call from Dr. Guy de The in Paris, another veteran of African epidemics.

  Dr. de The had reviewed the latest research from Africa. Of course, there was the stuff about the benign Kaposi’s sarcoma, and Francis had already heard of the new, more virulent KS that had been reported first in Uganda in 1972. But there was more, de The said. In the western Nile district of Uganda, young men living together were getting not only the typical, easygoing Kaposi’s sarcoma, but the nasty kind, like that tearing through the bodies of American homosexuals. These Africans also suffered from the lymphadenopathy that marked the early stages of the American disease, de The said. There had to be some connection.

  Of course, Francis thought. A new virus from Africa. It was where Bob Gallo at the National Cancer Institute figured his new retrovirus for Human T-cell Leukemia came from too. After all, HTLV only struck in the portions of Japan settled by Portuguese traders, who apparently had brought the microbe with them from Africa some 500 years ago. The African links reinforced Francis’s hypothesis about a transmissible agent.

  The talk also imbued him with a greater sense of urgency. Already, he was flying to Atlanta every few weeks to consult with the floundering Kaposi’s Sarcoma and Opportunistic Infections Task Force. They had yet to be able to find any clue as to what caused this damn thing, and now their most important work, the case-control study, was hopelessly mired because they didn’t have the staff and money to tabulate the questionnaires. The National Cancer Institute didn’t seem terribly interested in the disease. The little bench work the cancer institute was doing focused on poppers and the sperm theory, the hypothesis that sperm deposited during sex was causing immune suppression. Although nitrite inhalants clearly did something to the body that wasn’t good, the task force had all but eliminated them as a cause for the new syndrome. After all, there was nothing new about them. The sperm theory, which so enchanted the National Cancer Institute, seemed downright ludicrous to Francis. Gay men had been getting injected with sperm for centuries without getting Kaposi’s sarcoma, not to mention the well-documented proclivity female heterosexuals hold for insemination.

  Time is always the most formidable enemy in an epidemic, Francis thought. There wasn’t time to hope that the undirected interest of the National Cancer Institute or the National Institute for Allergy and Infectious Diseases would some day fall on these new diseases. To get the serious bench work going now, Francis was plotting to set up his own laboratories to do the lab work that normally fell to the NCI. He just had to figure out how to pirate the money to pay for it.

  The problems wouldn’t end there, he knew, even if he nailed down what caused this disease. As he recalled the wounded faces in Sudan, he also knew that even greater difficulties lay ahead for control of the disease. Customs and rituals would have to be dramatically changed, and he knew from his hepatitis work in the gay community that customs involving sex were the most implacable behaviors to try to alter.

  The day after Don Francis got his phone call from Paris, Dr. Edward Brandt, who, as Assistant Secretary for Health, was the top-ranking health official in the federal government, dashed off a memo to the directors of the National Cancer Institute, the National Institute for Allergy and Infectious Diseases, and the National Institute on Drug Abuse. The Centers for Disease Control was short of funds for its research into KS and opportunistic infections. Could these better-funded agencies pick up some of the work?

  The letter was in the form of a request, not an order. In the following weeks, it was simply ignored by the various chiefs of the National Institutes of Health in their comfortable offices in the rolling greens of Bethesda.

  Meanwhile, across the country, researchers waited for word on the research money the National Cancer Institute had promised at the September meeting. But it clearly was not forthcoming. The institute hadn’t even issued the standard request for proposals (RFP) that call for applications for federal grants. Without an RFP, the NCI could not even begin to accept applications for the funds, much less review proposals and conduct the lengthy on-site visits required for doling out money.

  Nobody at the National Cancer Institute seemed to be in much of a hurry. The new syndrome clearly was a very low priority, even as it was becoming clear to more and more people that it threatened calamity.

  January 12

  2 FIFTH AVENUE, NEW YORK CITY

  In the meeting at Larry Kramer’s apartment, everybody agreed that Paul Popham would be the ideal president of the new organization, Gay Men’s Health Crisis, which was geared to raising money for gay cancer research. Some of the more salient reasons were left unspoken. Paul personified the successful Fire Island A-list gays who had never become involved in Manhattan’s scruffy gay political scene. He’d help make working on this disease fashionable and something with more status than your typical gay crusade. He was also gorgeous, which would probably help attract volunteers. Unspoken too was the view that Larry Kramer’s confrontational style would make him an unsuitable president of the group, even though he had taken a leading role in its organization. His very name was anathema among the crowd they needed to reach if they were to raise substantial funds. Larry had a half-crush on Paul anyway, so he joined the unanimous vote for Paul. After Paul’s election, the board of directors of the new Gay Men’s Health Crisis was selected, and it included Larry Kramer and Paul’s longtime friend and Fire Island housemate, Enno Poersch.

  The group had persuaded the Paradise Garage, one of the less popular discos, to hold an April benefit. That, they figured, would give them a chance to raise enough money for research and then they could fold up and get back to their lives. Privately, Paul had made it clear that he did not want his role in the organization to become public knowledge. Nobody at work knew he was gay, he said, and he wanted it to stay that way. Larry bit his tongue. He didn’t want to be a scold about this, but Larry privately thought it boded
poorly to have a president of the Gay Men’s Health Crisis who did not want to say he was a gay man.

  January 14

  UNIVERSITY OF CALIFORNIA, SAN FRANCISCO

  Marc Conant told Cleve Jones that he needed advice from somebody political. They’d talk about it over dinner, but first there was someone Conant wanted Cleve to meet.

  Simon Guzman smiled shyly at Cleve Jones when the young activist entered the room on the top floor of the UC Medical Center. As they talked, Simon pulled out a snapshot of himself from Before. Smooth brown skin was pulled taut over well-developed muscles. Clad only in a tight pair of yellow Speedos, Simon was everything that Cleve had considered hot; he knew he could have fallen for the hunky Mexican in the photo.

  Simon Guzman’s body now, however, was barely more than a skeleton with sallow, lesion-covered skin sagging loosely, and tubes coursing in every conceivable orifice and vein. Simon explained that he hadn’t made many friends in his two years working as a printer in the suburb of Hayward. Yes, he had been popular but that kind of, uh, popularity didn’t put one in line for best buddies, not in this time and place. Now he had this horrible diarrhea that wouldn’t stop; the doctors couldn’t even tell him what was causing it. He was embarrassed that his mother would learn he was gay because he had gay cancer, and sometimes he felt so alone he wished he would just die. It would be over then.

  Cleve left the room feeling sick to his stomach. He wanted a drink.