And the Band Played On
March 31
The analysis of the first quarter’s AIDS incidence figures in San Francisco indicated how widespread the risk had become. The report on the AIDS caseload as of the end of March found that 1 in 250 single men between the ages of thirty-five and forty-four living in the Castro Street neighborhood had been diagnosed with AIDS, while 1 in 150 of the same age group living in the adjacent Duboce Triangle area was now stricken. Assuming that some of the men living in the neighborhood were heterosexual, Dr. Andrew Moss concluded that “in some cohorts of gay men in San Francisco, AIDS incidence rates in the thirty and forty-year-old groups are now of the order of 1 to 2 percent.”
Only later would studies show that by this time in 1983, the 62 percent of gay men who still engaged in risky sexual behavior had at least a 25 percent chance of being intimate with someone infected with the new virus. Hellish odds in this lottery of death.
By the end of March 1983, it was also clear that the epidemic was taking on different faces as it spread through different parts of the country. In New Jersey, for example, epidemiologists found that gay or bisexual men represented a minority of AIDS cases reported to state authorities as of March 28. Instead, intravenous drug users accounted for 44.2 percent of the state’s AIDS casualties, with Haitians making up another 4 percent. AIDS was rapidly becoming a disease of the poor and the non-whites in the sprawling ghettos bordering New York; 68 percent of New Jersey AIDS cases were black or Hispanic. In fact, researchers later marked the spread of AIDS in concentric circles, pulsing out of the center of Manhattan to include larger and larger rings of land and population in the impoverished outlands of metropolitan New York City. This proliferation of AIDS through the East Coast corridors of poverty heralded the start of the second AIDS epidemic in the United States, distinct from the epidemic in gay men.
In Europe, meanwhile, there were also two AIDS epidemics, one linked to Africa and a later-starting scourge among gay men who had visited the United States. All Belgian AIDS cases at this time, for example, were among Central Africans, largely Zairians, or people who had recently visited that continent. All forty-four cases of AIDS reported in West Germany as of March 31, 1983, were either among people who had traveled to Haiti or Africa, or among gay men who recently had vacationed in Florida, California, or most commonly, New York.
As for the United States, by March 31, the Centers for Disease Control had received reports of 1,279 cases of Acquired Immune Deficiency Syndrome. Of these, 485 had died.
April 4
VANCOUVER, BRITISH COLUMBIA
Legally, their hands were tied.
The board of directors of AIDS Vancouver had agreed on that. Everybody was talking about the “Orange County connection” who was still going to the bars. Legally, they decided there was nothing they could do about Gaetan Dugas, though ultimately the board dispatched a physician-member to talk to him. After the board meeting, members wondered privately to each other: Why would anyone do what Gaetan was doing?
27
TURNING POINTS
April 1983
PITIE-SALPETRIERE HOSPITAL, PARIS
Dr. Willy Rozenbaum did not get into medicine so he could watch people die. He was not suited for it. Rozenbaum long had noted that oncologists, or cancer specialists, seemed to have a fatalistic temperament that enabled them to accomodate themselves to death. Resignation just was not in the vocabulary of an infectious disease specialist, particularly in the latter quarter of the twentieth century. Rozenbaum was optimistic and active, the way he thought infectious disease experts tended to be. They dug right in and saved peoples’ lives. So many battles against disease had been won in the past century that this did not seem an untenable posture to take, and besides, Rozenbaum felt that the medical specialties tended to attract their practitioners less through intellectual intrigue than through personal temperament. His incorrigible optimism was why he was nagging Dr. Jean-Claude Chermann over at the Pasteur Institute.
“My patients are dying,” Rozenbaum complained. “I need a treatment.”
Dr. Francoise Barre was already working to culture a second isolate of the retrovirus she had discovered in late January, this time from the blood of a hemophiliac. Dr. Luc Montagnier, as the senior researcher, was reluctant to come out and say they had found the cause of AIDS, because they still had to prove that the new virus was not merely a new opportunistic infection that had taken advantage of the lymphadenopathy patient’s weakened immune system.
Willy Rozenbaum, however, was convinced. You don’t find a new human virus that often; it was beyond coincidence. And his priority was to save lives. He was tired of treating the various opportunistic infections associated with AIDS. It was like putting a brick in one bank of the dam only to know the other side would collapse in minutes. He wanted an anti-viral drug, maybe a substance that could interfere with the enzyme with which any retrovirus multiplied, reverse transcriptase.
One afternoon, Willy Rozenbaum was as excitable and eager as ever while Dr. Jean-Claude Chermann talked about a drug he had helped develop in the early 1970s. Its scientific name was antimoniotungstate, but Chermann called it HPA-23. During his long experiments with retroviruses in mice, he had found that the drug was effective in short-circuiting the reverse transcriptase process of the mouse leukemia retrovirus. Other experiments had already determined the safe dosage levels humans could tolerate.
A new protocol would have to be worked out for AIDS patients, of course, but it could be tried, Chermann said.
People with AIDS, Rozenbaum reminded him, had nothing to lose.
At the Pasteur Institute, Dr. Luc Montagnier was polishing the scientific paper on the retrovirus discovery for its publication next month in Science magazine. Even though, oddly, his antibody had been almost inactivated when it arrived from Dr. Robert Gallo’s lab at the National Cancer Institute, Montagnier had avoided delays, and he again ran tests to see whether his virus was the same as Gallo’s HTLV. There was some reaction, but it did not appear to be the same virus. Montagnier determined that he would not call his virus HTLV. Instead, he decided to call it RUB, a rearranging of the initials of the flight steward from whose lymph node the virus was cultured.
As part of the review process for the paper’s publication, Montagnier’s manuscript had been sent to Dr. Gallo in Bethesda, Maryland. Montagnier and Gallo were as dissimilar as two human beings can be, and each made the other vaguely uncomfortable. While Gallo was chummy, aggressive, and charismatic, Montagnier held himself aloof and was frequently described as doughty and patrician. Still, Montagnier recognized Gallo as a leader in human retrovirology. Moreover, Gallo carried enough weight in scientific circles to thwart any attempts the French might make to have their discoveries recognized in the United States, the only arena that really mattered.
According to Gallo, a Science editor thought RUB was a disgusting acronym for a virus relating to this particular disease. Gallo managed to persuade Montagnier to say his retrovirus was from the HTLV family that, coincidentally, Gallo had originally discovered.
Montagnier later marked the name change as one of the greater mistakes of his scientific career, the first step in the “long tunnel of darkness” that lay ahead.
April 10
SAN FRANCISCO
Ice.
The call came when Bill Kraus was in the shower.
Drifting snow.
The aide to Congressman Phillip Burton was crying. She could barely get her words out. The congressman, she sobbed, had collapsed early this morning. Remember? He’d complained all week about not feeling well.
The casket being lowered into the frozen ground….
“He’s dead, Bill,” she sobbed. “Phil is dead.”
Within days it was clear that Bill Kraus still had his job as congressional aide. Phil Burton’s widow, Sala, would run in the special election next month to fill the seat, and she would undoubtedly win. She had told Bill privately that he could continue his work on AIDS and gay rights. It would not be the
same, however, and Bill knew it. At best, Sala Burton would be a freshman congresswoman in a chamber where seniority was three-quarters of the game and artful arm-twisting was the other quarter.
In the weeks that followed, Bill couldn’t get over Phil’s death. It wasn’t just the practical considerations of working with Representative Sala Burton rather than Phil. Only a handful of friends understood Bill’s anguish, recalling his infrequent allusions to a winter in 1958 when his father had died and left him abandoned.
That Afternoon
LENOX HILL HOSPITAL, NEW YORK CITY
The rain pelted him, but Larry Kramer was ecstatic that, at last, his crusade to get New York Mayor Ed Koch to face up to AIDS was gathering some momentum. All morning, he and a small band of protestors had stood in the downpour waiting for Koch’s appearance at a symposium on AIDS. For a year and a half, the mayor had successfully avoided any meetings with community leaders to discuss the epidemic. By the time Koch arrived, Larry was worked into a lather and shouted at the mayor: “When are you going to do something about AIDS? How many people have to die?” All this was duly recorded on the television cameras.
Conference organizers had been terrified that the protestors would sabotage their long-fought effort to get Mayor Koch to show up and speak some long-awaited words on the epidemic. Indeed, Koch had shown little enthusiasm for the conference, but it was so immaculately orchestrated, he had little political choice but to attend.
The unlikely conference organizer was Dr. Kevin Cahill, a giant in New York City’s Irish community and one of the most prominent physicians in the United States. When the pope was shot in 1981, Kevin Cahill flew from New York to Rome to attend to him. When Daniel Ortega, the Sandinista president of Nicaragua, needed special medical attention, he called Kevin Cahill. And Cahill was New York State’s public health commissioner under former Governor Hugh Carey. His integrity was above reproach and his credentials as a God-fearing Catholic Irishman could not be matched. Observers credited his interest in AIDS to a certain ethical posture derived from his serious commitment to Catholicism. In his office on Fifth Avenue, he was beginning to see the ravages of the epidemic; he couldn’t believe nobody was shouting about it.
Kevin Cahill decided to hold a conference that would attract all the big-name AIDS researchers who could deliver state-of-the-art information on the epidemic. He quickly put together a book deal, which guaranteed virtually immediate publication of the papers that were to be presented at the conference. Once published, Senators Edward Kennedy and Daniel Moynihan had promised to use the information as background for the first Senate hearings on the syndrome.
Cahill created another powerful inducement for the august doctors’ participation: Anyone who presented at the conference would be invited to a private cocktail party with Leonard Bernstein at the composer’s apartment. The experts themselves might not want to attend still another AIDS conference, organizers figured, but surely their spouses would not permit them to pass up a dinner with Leonard Bernstein.
The pieces fell together perfectly. Cahill was able to enlist a star lineup of speakers that included Dr. Don Francis from the CDC AIDS Task Force; CDC director Dr. William Foege; the specialist on Haitian AIDS, Dr. Sheldon Landesman; New York City Health Commissioner David Sencer; and, to sum up the government’s response, Manhattan Congressman Ted Weiss. At Cahill’s urging, Terence Cardinal Cooke agreed to deliver the invocation, much to the horror of the archdiocesan staff.
The presence of Cardinal Cooke made it virtually impossible for Ed Koch to turn down the group’s request for a mayoral welcome. Koch reportedly called Cardinal Cooke’s offices repeatedly in the days before the conference to make sure that the cardinal actually would show up. The mayor’s nervous aides even refused to list the event in the standard schedule of mayoral public appearances routinely issued to the media.
Dr. Cahill opened the conference with an indictment of the medical and governmental response to the epidemic, a theme picked up by Don Francis.
“AIDS occurred at a most inopportune time,” Francis said, citing the “ravages” of budget cuts, the “cloud of reductions in force” over the CDC, and the “severe restrictions” on supply purchase and travel money. Hardly a minute in Francis’s speech went by without some allusion to “lack of resources.”
Don Francis was hoping that somebody would fashion his comments into the questions that needed to be asked of the federal government. He was handing the ammunition to them on a platter. Instead, the doctors applauded politely.
That night, organizers and presenters gathered for a post-conference cocktail party in Leonard Bernstein’s sumptuous Dakota apartment. Within a few hours, there was that predictable moment when all the heterosexual guests had left, mentioning children that needed to be tucked in and schedules that needed to be met. And, as tends to happen at chic Manhattan parties, the only people left were gay men. And Don Francis.
Don Francis so rarely got to relax anymore. Recently, CDC brass had persuaded him to move to Atlanta, where he would finally get the formal title of lab director for the AIDS Activities Office, formerly called the AIDS Task Force. The decision had spurred Francis’s determination for a CDC retrovirus lab. The morning Francis had left for the conference, he fired off another memo to Dr. Walt Dowdle, director of the Center for Infectious Diseases, insisting that “as part of CDC’s continuing pursuit of the cause of AIDS, a laboratory with retrovirus diagnostic capabilities is necessary at CDC.” The lab needed to be able to grow viruses, develop an antibody test for the presence of AIDS virus, determine the role of possible causative viruses in the syndrome, and next determine the prevalence of the virus’s infection among the various AIDS risk groups. Only then, Francis felt, could serious control efforts begin to stop the spread of the disease. According to the current plan, Don Francis and Jim Curran would serve as co-leaders of the CDC’s AIDS efforts, although CDC insiders knew that Curran held Francis in awe, given Francis’s international reputation for smallpox control. They predicted that Don Francis either would emerge naturally as the leader or a power struggle would ensue.
On this night, however, Don Francis was able to let his thoughts drift as he listened to Bernstein play Chopin melodies on the piano. The other guests tried to figure out whether Francis was gay. He kept in good shape for a forty-one-year-old, they noted, and he didn’t seem shocked or taken aback by any aspect of gay life. However, his appearance also counted against his gay quotient. His hair was just a bit too long, as if he yearned for his hippie days in his native northern California.
Larry Kramer, still delighted that the media had covered his protest, couldn’t help but develop a minor crush on Don Francis. He was awfully cute. Besides, their thinking seemed to flow on parallel lines. The disease had to be stopped, to be controlled, they agreed, not just studied in some microscope. Larry also got the feeling that although Don Francis wanted to do more, his hands were tied by the bureaucrats who would fire him if he said any more than he already had, which still was more than anyone else was saying.
The music drifted around them while rain splattered on the windows, and Don Francis felt at home. He had found a group of people who cared about this epidemic, people who would get something done. With celebrities like Leonard Bernstein signing on, people would start listening, he thought. Finally, he would be able to start undertaking the work that needed to be done.
Monday, April 11
The AIDS epidemic earned its most important emblem of newsworthiness with the bundles of Newsweek magazine that appeared across the nation that day, featuring a cover on which a disembodied hand held a tube of blood. “Caution KS/AIDS,” read the sticker on the tube. The cover line stated: “EPIDEMIC: The Mysterious and Deadly Disease Called AIDS May Be the Public-Health Threat of the Century. How Did It Start? Can It Be Stopped?” As usual, the magazine cover was better at posing questions than the story would be at answering them, but with AIDS finally ensconced as a legitimate news story, an avalanche of coverage bega
n. The revelations about transfusion AIDS in late December had started it all. In the first three months of 1983, 169 stories about the epidemic had run in the nation’s major newspapers and newsmagazines, more than four times the number of the last three months of 1982. Moreover, from April through June, these major news organs published an astonishing 680 stories. The media blitz on AIDS lasted into the summer and provided an unprecedented, albeit brief, degree of attention to the epidemic.
Every newspaper found its own angle to the story, although most papers, like the newsmagazines, handed it to their science writers, who preferred penning yarns about the people in the white coats. Occasionally, there was coverage of the trials of an AIDS patient, told in sudsy, soap opera-style journalism. In San Francisco, New York, and Los Angeles, these stories included polite homosexuals who went by their real names; in less cosmopolitan locales, the character of such stories invariably became let’s-call-him-Bob. Even the supermarket tabloids got into the act. The Globe, for one, ran a lengthy cover story saying that AIDS actually was part of King Tut’s curse, having followed the tour of the Tut treasures to the United States in the late 1970s. “Either Tutankhamen died from the disease or it was placed in the tomb to punish those who might later defile his grave,” said a former San Diego coroner who dabbled in archeology.
Two trends were most pronounced in the coverage. First was the complete lack of any story concerning the shortfalls of resources for AIDS research. Usually, there was a complaint about the lack of funds from a gay doctor and a heated denial from somebody at the Centers for Disease Control or the National Institutes of Health. That would be that. No more digging. No more research beyond perusing the government press releases. The profession that had toppled a president over a burglary less than a decade before had returned to the fold of official-statement journalism. This, of course, was not the case with other perils to the public health; other issues, such as toxic waste or even Tylenol, called for huge investigative teams and filing Freedom of Information Act requests. But there was something embarrassing about this whole story; you could tell by the cursory coverage and all the talk of “bodily fluids” instead of semen and anal intercourse. Newsweek called AIDS the “public health threat of the century” on its cover, but it never treated the epidemic as such in its newsroom. Nor did any other news organization outside San Francisco.