And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (24 page)

“Give us something else,” the reporters begged Haverkos.

It was their standard line. Haverkos translated it to mean, “Give us something about the epidemic that doesn’t involve gays.” The science writers insisted their editors wouldn’t hear of writing stories about gay diseases and gay sex. They needed an angle that was, well, legitimate. Haverkos had noted that the story didn’t make the
Wall Street Journal
until it had a heterosexual angle. He wondered how reporters could honestly try to get around the fact that for all the new risk groups emerging, gay men still composed the greatest proportion of GRID cases. He also knew, of course, that lack of coverage was the most obvious single reason studies like his Haitian protocol would be left undone. Without the media to watch the federal government, the budget people would be left to finance GRID research as they saw fit. In an administration committed to cutting domestic spending, that meant virtually no funding at all.

N
EW
Y
ORK
U
NIVERSITY
M
EDICAL
C
ENTER
, N
EW
Y
ORK
C
ITY

Gaetan Dugas seemed quite pleased with himself as he rattled off his sexual exploits to Bill Darrow. Darrow had tracked down Gaetan through Alvin Friedman-Kien. All my beautiful lovers, the airline steward seemed to be saying, rather proudly. He paused for a moment before asking a question in what Darrow thought was too naive a tone.

“Why are you interested in all these people?”

“Some of them have been diagnosed with this immune deficiency and some haven’t. We want to find out why some get the disease and others don’t.”

Gaetan’s face dropped. He looked stunned, as if a new and horrible idea had only now taken residence in his mind.

“You mean I may have been passing this around?” he asked.

“Yeah,” Darrow said, surprised that Gaetan hadn’t thought of it before. “You may be passing it around or you might have gotten it from someone else.”

The last part of Darrow’s comment, it turned out, would probably have been best left unsaid given Gaetan’s subsequent activities.

March 25

S
AN
F
RANCISCO

After the last heart attack, Simon P. Guzman’s body struggled three painful minutes before surrendering to the inevitable shortly after 11 A.M. He was the eleventh man to die in the GRID epidemic in San Francisco. His death certificate marked the first time that cryptosporidiosis, a disease of sheep, was listed as a cause of death for a human being.

March 30

A
TLANTA

The NCAA basketball play-offs were starting on the tube, but Harold Jaffe had more than sports on his mind when he invited Paul Weisner over to the watch the game. As chief of the CDC’s venereal disease division, Weisner was boss not only to Jaffe but to the greatest share of the Kaposi’s Sarcoma and Opportunistic Infections Task Force. Jaffe figured the basketball game would give them a chance to talk, away from the constantly ringing phones at headquarters on Clifton Road. Jaffe methodically gave the growing evidence that GRID was a sexually transmitted disease. Weisner quickly saw the implications of the epidemiology.

“We’re going to have to make a long-term commitment,” Jaffe ventured. “We can’t just keep borrowing resources. This isn’t going away. It’s going to get bigger and bigger.”

Weisner weighed Jaffe’s comments and agreed. “You’ve got my commitment,” he answered.

Jaffe was ecstatic as he settled back to watch the game. For the first time, a person in authority was on record as favoring a permanent commitment of resources to the epidemic. In terms of the organizational chart, of course, Weisner was at best a mid-level administrator, but he was somebody who had more clout than anybody on the task force. The top CDC brass were more likely to listen to him, Jaffe figured. At this point, any sign of help was welcome.

April 1

U
NIVERSITY OF
C
ALIFORNIA
,
S
AN
F
RANCISCO

Speaking smoothly in his charming French accent, the young man seemed the personification of all things debonair. Marcus Conant was amazed that the airline steward had been diagnosed with Kaposi’s sarcoma for almost two years already. He still looked healthy. He still exuded a vibrant sensuality.

Gaetan Dugas was proud that his cancer had not progressed. He was going to beat this thing, he insisted. He just wanted Conant to check him out and make sure everything was under control.

After the examination, as Gaetan was pulling on his stylish shirt, Conant mentioned that Gaetan should stop having sex.

“It’s probably some virus,” said Conant. “If you do have sex, make sure to avoid anything where you come inside somebody or exchange body fluids.”

Gaetan looked wounded, but his voice betrayed a fierce edge of bitterness.

“Of course, I’m going to have sex,” he told Conant. “Nobody’s proven to me that you can spread cancer.”

Gaetan cut Conant’s rebuttal short. “Somebody gave this thing to me,” he said. “I’m not going to give up sex.”

April 2

A
TLANTA

By now, a dizzying array of acronyms was being bandied about as possible monikers for an epidemic that, though ten months old, remained unnamed. Besides GRID, some doctors liked ACIDS, for Acquired Community Immune Deficiency Syndrome, and then others favored CAIDS, for Community Acquired Immune Deficiency Syndrome. The CDC hated GRID and preferred calling it “the epidemic of immune deficiency.” The “community” in other versions, of course, was a polite way of saying gay; the doctors couldn’t let go of the notion that one identified this disease by whom it hit rather than what it did.

Whether CAIDS, ACIDS, or GRID, the epidemic had by April 2, 1982, struck 300 Americans and killed 119. In the past two weeks, cases had been detected in two more states and two more European nations, indicating that the epidemic had now spread across nineteen states and seven countries. Of the 300 cases in the United States, 242 were gay or bisexual men, 30 were heterosexual men, 10 were heterosexual women, and 18 were men of unknown sexual orientation. Since transmission through unclean needles had yet to be proven scientifically, the cautious CDC statisticians had not yet roped off addicts as a separate risk group. By now, somebody was dying almost every day in America from an epidemic that still did not have a name.

April 8

P
ARADISE
G
ARAGE
,
M
ANHATTAN

Few nights could have been more poorly chosen for the first benefit any organization had ever undertaken to raise private funds for the epidemic. It was the second day of Passover, the night before Good Friday. Gay Men’s Health Crisis had distributed tickets in stores all over town, in the bathhouses and gay card shops. But so far, they had sold only 500 tickets. Larry Kramer, Paul Popham, Enno Poersch, and the other organizers from the Gay Men’s Health Crisis nervously waited to see whether anyone would show up; so many of their friends had told them the whole subject of this gay cancer was such a downer.

Tensions had begun to surface in the committee. Larry Kramer insisted on being the public spokesman for the press. That was fine with Paul Popham since he didn’t want any public role that might have repercussions for his job. Some board members, however, were worried that Kramer’s rhetoric was too harsh. He was always chastising Mayor Ed Koch for refusing to meet with the group and ridiculing Health Commissioner David Sencer for not providing any educational material on the epidemic. After any fight, however, the board always got back together. There weren’t that many other people who believed the epidemic was a worthwhile effort to work on.

In the past few weeks, the committee had realized that it was going to be a permanent organization, not a temporary fund-raising structure. With the city government ignoring the epidemic, somebody needed to get out educational information and coordinate volunteer efforts directed at the GRID victims, who were often left immobilized and isolated. Kramer was agitating that the committee could be a powerful pressure group to force the city into providing services, but most members were eager to avoid the kind of politics that marked the petty gay leadership scene. Besides, the medical needs seemed to be growing so fast. Dr. Michael Lange had recently appeared before the board and outlined the disaster he was convinced lay ahead. There was a lot of work to be done, he insisted, and the gay community would have to shoulder a lot of it themselves.

The lines started queuing up an hour before Paradise Garage even opened. Everybody was there, many toting checks with substantial contributions. Within a few hours, the committee raised $52,000. Enno Poersch was amazed at the turnout. These weren’t political people—they were the party crowd he had danced with on Fire Island; finally, they were caring about something other than the “four D’s” of drugs, dick, disco, and dish. By now, Enno had been told that Nick’s toxoplasmosis was part of the GRID epidemic. Enno thought often of Nick, dead now for fifteen months. As he saw the hundreds of men swaying to disco music under the shimmering disco ball, Enno wished Nick were there to share the night and the happiness with him.

Everybody cheered enthusiastically when Paul Popham addressed the crowd in his broad, plainspoken Oregon accent.

“It may be that an equal measure of fear and hope has brought us together, but the great thing is,
we are
together,” said Paul. “Most of you know someone, or someone who knows someone, who has been touched by the outbreak. I have lost two friends myself…. We’ve got to fight back. We’ve got to be tough. We’ve got to show each other and the unfriendly world that we’ve got more than looks, brains, talent, and money. We’ve got guts too, plus an awful lot of heart.”

F
IRE
I
SLAND

Paul Popham had waited all weekend in the house on Ocean Walk for the overcast skies to clear, but they kept their steely cast. Finally, on Sunday, it was nearing the time when he would have to return to Manhattan, and he couldn’t wait any longer. A year ago, he had come here with the ashes of his friend Rick Wellikoff. It had been a sunny, melancholy day, warmed by the sharing of grief with Rick’s surviving lover and friends. Now, Rick’s lover was ailing too, the fourth person from the house on Ocean Walk to be stricken by this new plague, and Paul was alone with the ashes of Jack Nau.

Paul knew, in some corner of his awareness, that he was devoting himself so thoroughly to the Gay Men’s Health Crisis in large part because he had to bury the grief he still felt so keenly both for Rick, the Brooklyn schoolteacher, and for Jack, the designer who once did the windows at the Long Island Sak’s Fifth Avenue. As a harsh rain beat down, Paul again pondered the familiar imponderables. Why is this happening to me, to all my friends? Hadn’t they put up with enough shit for one lifetime? Why doesn’t anybody seem to care?

What a fucking nightmare.

The cold white fingers of the sea stroked the indifferent sand, littered by a winter’s worth of misshapen flotsam. Paul opened the box and shook. The sea fingers reached to grab Jack’s ashes and pull them into the brine. Paul gazed out to where the leaden sky met the gray Atlantic and wondered when it would all end. This can’t be happening, he thought, it’s simply too unbelievable.

Yet, as he shook the last of the bone dust that was once Jack Nau into the sea, Paul knew that it was happening and it was all too believable.

April 1982

D
AVIES MEDICAL CENTER,
S
AN
F
RANCISCO

Michael Maletta was bitter, angry, and hostile when Bill Darrow phoned him at his hospital bed. For two years he had been suffering from bizarre health problems and none of the doctors had been able to help him; for the longest time they hadn’t even told him what he had. Now, some nosy doctor from the Centers for Disease Control was on the phone to ask him all kinds of personal questions about some Air Canada flight attendant he had fucked with only God knows when. And all those questions about his life in Greenwich Village. Christ, that must have been five, six years ago. He couldn’t remember.

Darrow maintained his best professional demeanor. He had spent years chasing syphilis in New York City back in the 1960s after he had answered President Kennedy’s call to do something for his country. Then he had been in his twenties, when he could hold on to the naive notion that just one person could make a difference. Now, Darrow was forty-two years old, with shards of gray at his temples and the sophist’s cynicism that creeps into the voices of those who tend toward the academic. Once again, however, he had that old feeling that he could make a difference.

He had scented the trail distinctly after his talk with Gaetan Dugas in New York City. Gaetan had apologized about just updating his fabric-covered address book. Many names had been lost, he sighed, but one just couldn’t keep them all. There’d be far too many. Nonetheless, he had seventy-three names and phone numbers of his most promising recent assignations. That led Darrow to the stories about Jack Nau and Paul Popham and the house on Ocean Walk, where so many of New York City’s first GRID victims seemed to have lived. There was a second house on Fire Island with a similar concentration of dead and dying, Darrow also learned; it was the home of Paul Popham’s former lover, the place where Paul had lived the summer before he moved in with Nick, Enno Poersch, and Rick Wellikoff.

The connections between Gaetan and both Michael Maletta, who was one of the first Kaposi’s sarcoma patients in San Francisco, and Nick, one of the nation’s first toxoplasmosis victims, were tantalizing. Nick, Enno, and Michael, it turned out, had all run with the same crowd back in the 1970s. In fact, a whole cluster of the nation’s earliest cases appeared to have lived within doors of each other, south of Washington Square in the West Village. They partied together, dined together, and, friends intimated, slept together. Some people slipped in and out of this social circle over the glorious years in the late 1970s, but there was only one summer during which all the early GRID cases had been in New York at one time before they split up and went their separate ways. Unfortunately, nobody could tell Darrow which summer that was.

But Darrow felt himself getting close, being drawn to the clue that might tell him when, where, and how this sickness got into the country. It seemed beyond coincidence that a group of people, who had lived in one time and place together, should later pop up with the same disease after they had moved to such diverse parts of the nation. They must have been exposed to whatever was causing this when they were together. When was it?

Michael Maletta was grouchy at the prodding. Yes, he had moved to San Francisco in…well, it had to be before the end of 1977, but from there, Michael’s memory and cooperation wore thin. There was a photographer whom they all ran with that summer in Manhattan too, Michael recalled. A fashion photographer.

Bill Darrow found him in a Los Angeles hospital.

L
OS
A
NGELES

“We were together all the time,” the photographer reminisced. “We did
everything
together.”

The man searched his memory and recalled the image of soft white sails scraping a purple night sky in New York harbor.

“All I remember is that all the boats were in the harbor,” he said. “All the big ships.”

Darrow remembered the day immediately. Who could forget the pictures of the graceful ships and fireworks arching behind the torch of the Statue of Liberty?

“The Bicentennial,” Darrow said aloud, almost to himself. “Of course. The Bicentennial.”

July 4, 1976. An international festival to celebrate America’s birthday with ships from fifty-five nations. People had come to New York City from all over the world.

The notion swept over him the way insights sometimes do, with each wave drawing more facts and connections into its wake. Nothing happened before 1976, but people had started getting sick in 1978 and 1979. It was clear from the other links in the cluster study that the disease could lie dormant for a long time. People were spreading it all over in 1977 and 1978, which accounted for so many cases spontaneously appearing in so many different regions of the country.

As the Bicentennial realization sank in deeper, a sense of dread overcame Darrow. People don’t get this overnight; it can wait for years. It was going to be a huge problem, and it was only starting now. Decades of venereal disease work had instructed Darrow on those the disease would single out. Some of the best artists and musicians, politicians and businessmen, some of the pillars of America were gay, and they would fall down and die, and he wasn’t sure whether anybody could do anything to stop it.

April 13

G
AY AND
L
ESBIAN
C
OMMUNITY
S
ERVICES
C
ENTER
,
H
OLLYWOOD

The Gay and Lesbian Community Services Center was in the heart of Congressman Henry Waxman’s district. It was here that Tim Westmoreland, counsel for Waxman’s Subcommittee on Health and the Environment, had engineered the first congressional probe into the growing GRID epidemic.

Westmoreland figured the hearing would draw much-needed media attention to the quiet killing caused by the gay cancer and, finally, get some of the federal bureaucrats on record as to what they were doing about the disease in the face of the Reagan budget slashing. The hearing was timely not so much because of anything happening in the epidemic, Westmoreland thought, but because of the administration’s new health budget proposals. The Reagan budget men wanted to slice 1,000 grants from the National Institutes of Health and reduce positions on the Epidemiological Intelligence Service. The $5 million increase in the CDC budget barely covered inflation and gave the agency no new funds to deal with the new epidemic. Moreover, nowhere in the government budget had health officials established a line item to deal with GRID; instead, various researchers were expected to continue to pilfer and pirate money and personnel from other programs.

For the occasion, Westmoreland had written Waxman an opening statement that was meant to be a salvo in the war against federal indifference to the epidemic.

“I want to be especially blunt about the political aspects of Kaposi’s sarcoma,” Waxman said. “This horrible disease afflicts members of one of the nation’s most stigmatized and discriminated against minorities. The victims are not typical, Main Street Americans. They are gays, mainly from New York, Los Angeles, and San Francisco.

“There is no doubt in my mind that, if the same disease had appeared among Americans of Norwegian descent, or among tennis players, rather than gay males, the responses of both the government and the medical community would have been different.

“Legionnaire’s disease hit a group of predominantly white, heterosexual, middle-aged members of the American Legion. The respectability of the victims brought them a degree of attention and funding for research and treatment far greater than that made available so far to the victims of Kaposi’s sarcoma.

“I want to emphasize the contrast, because the more popular Legionnaire’s disease affected fewer people and proved less likely to be fatal. What society judged was not the severity of the disease but the social acceptability of the individuals affected with it…. I intend to fight any effort by anyone at any level to make public health policy regarding Kaposi’s sarcoma or any other disease on the basis of his or her personal prejudices regarding other people’s sexual preferences or life-styles.”

Privately, Jim Curran of the Centers for Disease Control, who awaited his turn to testify at the hearing, cheered Waxman’s statement. Like everyone at the KSOI Task Force, he had no doubt that just such prejudices regarding sexual preference were preventing everybody, from the budget people to the newspaper reporters, from taking this scourge seriously. As a federal employee, Curran had a thin line to walk between honesty and loyalty. He could not openly call for more money, but he could nudge facts toward logical conclusions, as when he talked about the familiar iceberg and, in a departure from his prepared remarks, mentioned for the first time that the epidemic would affect tens of thousands and not just the hundreds counted in the GRID stats.

“The epidemic may extend much further than currently described and may include other cancers as well as thousands or tens of thousands of persons with immune defects,” Curran told the subcommittee.

With death rates soaring to 7 5 percent among people diagnosed with GRID for two years, the specter of 100 percent fatality from the syndrome loomed ahead, he added. Moreover, the deaths were coming at a huge cost. Curran pointed to three cases, each of which consumed at least $50,000 in medical treatment before death.

Waxman pushed Curran hard on the effect of budget cutting. Curran was evasive on specifics, noting that virtually all the KS study money had come from money redirected from other research. He pledged to “personally…fight to make sure the task force doesn’t get compromised,” while pointedly praising “my own superiors that, in spite of the threat of a reduction in force at CDC, which is quite a specter to hang over career scientists’ heads, in spite of that threat, Kaposi’s sarcoma was relatively spared and we surged on in spite of it.”

Dr. Bruce Chabner from the Division of Cancer Treatment at the National Cancer Institute had a much tougher time eking out NCI accomplishments under questioning from the Los Angeles congressman. After pointing to the September workshop in Bethesda as a major NCI effort, he concluded that he just couldn’t say what the NCI was doing for the epidemic, although he suspected that some NCI grant recipients were spending money from other projects on the new disease. “It is hard to account for the amount of money that they have invested through redirection of their grant support, but we feel it is considerable in view of the number of publications that have appeared.”

At the end of his testimony, Chabner announced that the National Cancer Institute was going to release $1 million for Kaposi’s sarcoma research, with one-quarter to go for treatment-directed studies and the rest for basic research. Chabner said the NCI hoped to get the money out by October.

Westmoreland grimaced when he heard the figure, thinking that Chabner should be embarrassed to mention a $1 million grant. A grant to a single research center for one project often ran beyond $10 million; it was laughable for the feds to say they were releasing $1 million to be shared by researchers across the country.

Fortunately, the president of the American Public Health Association was on hand to make just such points.

“We believe that the immunoresponse system of this country is weak, that it needs to be strengthened, and that only Congress can do it,” said Stan Matek. He praised the CDC effort but added that “we are also worried about them. We don’t know how close they are to the end of their rope in resolving the dangers” of the new epidemic. “We believe they cannot cope with Kaposi’s sarcoma and its related syndrome. We believe their intervention abilities are so handicapped that the nation’s health itself is in peril…. [The current work represents, I fear, only high-level, high-caliber, ‘ad-hocracy.’ There is no guarantee of continuity of effort. Dr. Curran has promised us that he personally will fight to keep the effort going. Unfortunately, Dr. Curran can speak only as an individual technician and professional. The issue lies beyond him and above him; it is an issue of budget allocation….

“Where is that epidemiologically essential money going to come from? It is not going to come from NIH, or at least not in any significant amounts, given the prior commitments and loss in real funding capability. If it comes from within CDC, it will come from robbing Peter to pay Paul. It will come by shifting already committed and needed resources…which is fine if you are Paul, but not so useful if you are Peter.”

After testifying at the hearing, Drs. Marc Conant and Michael Gottlieb drove over to UCLA, where the conversation quickly drifted toward the tensions of doctoring in this epidemic. The pair were among a number of doctors in L.A., New York, and San Francisco who had created an informal support network, sharing their fears about whether they, as health workers, would join the risk groups of a disease whose transmission routes so clearly paralleled hepatitis B. Marc Conant had already devised a plan in which he could retire, build his cabin in the Sierra Nevada Mountains, and live on $30,000 a year. Gottlieb’s wife, meanwhile, wanted to take Gottlieb away to Bora Bora. Conant was relieved to know that Gottlieb, a married, heterosexual, Jewish man so vastly different from himself, was going through precisely the same anxieties. Of course, both knew it was an unspeakable thing to do, to even talk about running away.