And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (16 page)

“See that gorgeous guy over there,” Gary said, pointing toward a blond in jeans that fit so snugly one couldn’t help but notice he was wearing no underwear. “First, somebody else will walk up to him and try to strike up a conversation. He won’t talk much to him, though. Remember, never be the first guy to go up to someone.”

Gary gave Joe a significant look to make sure he understood.

“People won’t go home with the first person to talk to them—it makes them look too hard up,” continued the thirty-six-year-old psychotherapist. “It’s the second person who gets the shot.”

Joe leaned back toward the wall as he watched Gary’s prediction unfold perfectly. Gary pulled Joe away from the wall.

“No, no, no,” Gary prodded, like a nun lecturing an errant altar boy. “Never stand by the wall. Always stand out a little, and keep yourself sort of turned, so people notice you.”

Although he had been a psychotherapist in gay San Francisco for seven years, Joe was still amazed at the intricacies involved in gay cruising. Joe had always tended toward long relationships, while Gary was the horniest person Joe had ever met. Joe and Gary were so different in so many ways; that probably was why they had been best friends almost from the day they met in 1977.

Gary Walsh saw the Georgia-bred Joe Brewer as a southern gentleman who understood life’s finer qualities; for his part, Joe liked Gary’s straightforward midwestern informality, the legacy of a working-class Catholic childhood in Iowa so vastly different from Joe’s southern Methodist roots. Gary seemed to envy Joe’s ability to maintain long, sizzling relationships; Joe couldn’t fathom how Gary kept up his active sexual pursuits even after he was settled down with a wonderful boyfriend. Professionally, Joe and Gary made a good pair. They were among the pioneers of gay psychotherapy in San Francisco, and they had virtually invented gay couples’ therapy.

Gary barely held back a wicked smile as he slipped into sample poses guaranteed to increase Joe’s cruising yield. Brewer mused on the irony that he and Gary were guiding couples through the difficulties of maintaining relationships in the biggest sexual candy store God ever invented, even while they were having problems in their own love lives. Joe was single now, and he hated being single. Gary, meanwhile, was struggling with his lover Matt Krieger over all the typical issues of monogamy and individualization. Matt wanted to be married but Gary wanted to fuck around, so Matt would fuck around just to show Gary. To his psychologist’s eye, Joe thought it was typical male competition. But then, so much of the gay community’s sexuality, right down to the whole cruising ritual, seemed more defined by gender than sexual orientation, Joe noticed.

Joe Brewer’s early memories of the Castro were of romantic bubble baths after lovemaking. He was not long from the closet when he came to the Bay Area in 1970, and not far from the times when he had pleaded with a psychiatrist to make him straight. Shedding his guilt in the frolicsome first days of the Castro boom was liberating, and the sex was so brotherly. Slowly, the relational aspects of the sexual interaction dropped away. Intimacy disappeared and, before long, people were wearing outward signs of sexual tasks, hankies and keys, to make their cruising more efficient, and the bathhouses became virtual convenience stores for quick cavorting, 7-Elevens for butt-fucking.

About 3,000 gay men a week streamed to the gargantuan bathhouse at Eighth and Howard streets, the Club Baths, which could serve up to 800 customers at any given time. Joe figured that the attraction to promiscuity and depersonalization of sex rested on issues surrounding a fear of intimacy. Joe knew these were not gay issues but male issues. The trouble was that, by definition, you had a gay male subculture in which there was nothing to moderate the utterly male values that were being adulated more religiously than any macho heterosexual could imagine, right down to the cold, hard stares of the bathhouse attendants. Promiscuity was rampant because in an all-male subculture there was nobody to say “no”—no moderating role like that a woman plays in the heterosexual milieu. Some heterosexual males privately confided that they were enthralled with the idea of the immediate, available, even anonymous, sex a bathhouse offered, if they could only find women who would agree. Gay men, of course, agreed, quite frequently.

Too frequently, Joe sometimes thought. Stripped of humanity, sex sought ever-rising levels of physical stimulation in increasingly esoteric practices. Joe preferred the bubble baths and wished he were in love again.

Gary Walsh had a far less complicated view of gay sexuality. A passionate devotee of sexual liberation, Gary believed that promiscuity was a means to exorcise the guilt and self-alienation ingrained in all gay men by a heterosexual society clinging to the obsolete values of monogamy. Privately, Gary thought people who didn’t like a lot of sex were just plain boring. Life was for learning, he lectured Joe, and sex was as legitimate a learning tool as anything else.

Over lunch, the pair planned a weekend trip to the gay resort area on the Russian River, an hour’s drive north of San Francisco. Joe wasn’t surprised when Gary later canceled, complaining of a yeast infection in his mouth. Gary always seemed to be getting something.

August 7

S
AN
F
RANCISCO

By early August, there were eighteen cases of gay men suffering from the baffling immune deficiency in the San Francisco Bay Area; two had died.

“No one yet knows the extent of this potential danger, but playing it on the safe side for a few weeks cannot hurt,”
The Sentinel,
a local gay paper, editorialized. “Just a few short years ago, the government dropped millions of dollars into research to determine the cause of Legionnaire’s disease, which affected relatively few people. No such outpouring of funds has yet been forthcoming to research the how’s and why’s of KS, a rapidly fatal form of cancer that has claimed far more victims in a very short time than did Legionnaire’s disease.”

August 11

2 F
IFTH
A
VENUE
, N
EW
Y
ORK
C
ITY

Twilight brought no respite from the humidity as eighty men streamed into Larry Kramer’s apartment on the edge of Washington Square. Paul Popham was there with his Fire Island housemate Enno Poersch; KS victim Donald Krintzman came with his lover. The men milled around the apartment, sharing the latest rumors about who was sick and who didn’t look well. Larry scanned the crowd and noted, with some relief, that none of the political crazies were there. Present, instead, were la crème de la crème of New York’s A-list gay nightlife, the hottest guys you’d see on the island or at the trendiest discos. The conversation abruptly ended when Larry introduced a short balding man who mounted a platform in the center of the comfortable living room.

“We’re seeing only the tip of the iceberg,” said Dr. Alvin Friedman-Kien in what would become the all-encompassing metaphor for the AIDS epidemic for years to come.

He didn’t know what was causing the epidemic, but he knew that the people who got sick had lots of sex partners and a long history of VD. (Larry noticed a lot of the men shift uncomfortably in their Topsiders.) The word needed to get out, Friedman-Kien warned; people needed to take it seriously. The doctor added that he needed money for research—now.

For most of the people in that apartment, the brief stunned silence that followed Friedman-Kien’s talk represented the moment between their Before and After. The days of their lives would be counted from this time when they realized that something brutally unexpected had interrupted their plans. For Enno Poersch, this was the moment it dawned on him that the horrible death Nick had suffered seven months ago might be related to Jack Nau’s and Rick Wellikoff’s illnesses.

When Larry asked for volunteers to work on some larger fund-raisers, Enno stayed behind and so did Paul Popham. Paul had rather prided himself on never getting involved in gay politics, but this was different. Two friends were dead and another was dying. About thirty-five other people stayed behind to organize fund-raising tables at Fire Island for Labor Day weekend. Larry passed the hat for Friedman-Kien’s NYU research and collected $6,635. That was just about all the private money that was to be raised to fight the new epidemic for the rest of the year.

Some people left Larry Kramer’s apartment angry at Friedman-Kien. When one man asked him how to avoid getting this gay cancer, Friedman-Kien had repeated that he would stop having sex. The gay community didn’t need some Moral Majority doctor telling them what to do with their sex lives, somebody fumed. Others suspected that the meeting was simply a furtherance of Larry’s well-known distaste for promiscuity.

Still, Larry considered his new cause to be off to a grand start. He spent the next few days writing letters to alert key people to the epidemic. He dropped a note to Calvin Klein, asking for contributions to research, and he dashed off a plea to a closeted gay reporter at
The New York Times
for more coverage. Cases had more than doubled in the month since that first piece in
The Times,
and Larry hadn’t seen another word since.

September 7, Labor Day

F
IRE
I
SLAND
, N
EW
Y
ORK

“Are you crazy?”

Paul Popham couldn’t comprehend what the guy was driving at.

“You’re just making a big deal out of nothing,” the acquaintance continued, giving Paul another strange look before striding purposefully toward the Donna Summer music pulsating from the Ice Palace.

How could you
not
be concerned, Paul wondered. More than 100 gay men were sick with something, many of them dead, and everybody was acting as though Paul were some major-league party-pooper out to wreck everybody’s good time. Paul was downright aggravated. Lord knows, he liked to party too, but this was a time to be serious. He was asking people to put a buck or two in a can, and he was not only ignored but was often treated with unabashed hostility. Guys told him that he was hysterical, or participating in a heterosexual plot to undermine the gay community. At best, the men were apathetic.

The weekend was a disaster from the start. Larry Kramer, Enno Poersch, Paul Popham, and a handful of others had stretched a banner above a card table near the dock where everybody came into The Pines. “Give to Gay Cancer,” it read. With some of the money raised at Larry’s apartment, they had printed up thousands of copies of a
New York Native
article written by Dr. Larry Mass, another volunteer that weekend, and put them at every doorstep in the island’s two gay communities, The Pines and Cherry Grove. To each reprint, they attached slips explaining how people could support Friedman-Kien’s research. The small band of organizers figured they’d be able to raise thousands from the 15,000 gay men who had congregated for the last blowout of the ’81 season.

They were wrong.

“Leave me alone,” was one typical reaction.

“This is a downer,” was another.

“What are you talking about?” was about the nicest response they got.

Enno was amazed at all the smart-ass remarks. Larry was dispirited. How do you help a community that doesn’t want help? he wondered. For his part, Paul felt a wholly unfamiliar sense of alienation. These are my kind of people, he thought. He knew these faces, had seen them for years dancing at The Saint, strolling around the St. Mark’s Baths, sunning on the beach. They were paying $10 to get into the Ice Palace and another $50 or so for the drugs that would keep them up until dawn, not to mention the $4,000 it took to buy this summer’s share in a Fire Island house rental. What was a few dollars for scientific research?

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.

September 15, 1981

N
ATIONAL
I
NSTITUTES OF
H
EALTH,
B
ETHESDA
, M
ARYLAND

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.

U
NIVERSITY OF
C
ALIFORNIA
,
S
AN
F
RANCISCO

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

T
HE
T
ENDERLOIN
D
ISTRICT,
S
AN
F
RANCISCO

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.