And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (11 page)

Kico knew he was in love the minute he saw Bill standing at the hip dance bar, The Stud, in his chinos, tennis shoes, and the knit polo shirt that showed off Bill’s pectorals and flat stomach.

“I work at City Hall,” Bill had said proudly, sliding the subject of politics into the conversation as soon as he could.

“Where’s that?” Kico asked.

“I can’t believe I’m talking to somebody who doesn’t know where City Hall is,” said Bill. “I work for Harry Britt.”

“Who’s that?”

“That’s who took Harvey Milk’s place,” said Bill, as if that should explain it all.

Kico had never heard of Harvey Milk.

“We live in two different worlds,” said Bill, somewhat pleased with the idea.

Bill couldn’t believe that Kico had lived six months in San Francisco and had never gone to bed with anybody. He laughed at the earnest twenty-four-year-old when he saw the Hindu religious book, the Bhagavad Gita, by Kico’s bed.

“You’re just like a little kid,” concluded Bill after they made love.

“What other way is there to be?” Kico asked.

Kico was enchanted by the earnest politico who seemed so caught up in helping people and making a difference in the world. Bill explained all kinds of things to Kico, about gay politics, the importance of coalitions, and his new plan to foster gay clout by placing key gay activists in the offices of various political leaders.

“You don’t get power by just having these people come to your cocktail parties,” Bill would lecture. “You need to be on the inside.”

Bill seemed to take a most wicked pleasure, however, in shocking the recent émigré’s sensibilities, explaining the nuances of cruising and the rituals of such hallowed gay institutions as bathhouses.

“It’s dirty,” Kico said flatly of the raucous bathhouse sexuality.

“It’s not dirty—that’s a value judgment,” Bill answered. “If that’s what a person feels good doing, it’s not dirty.”

“Why would somebody want some stranger’s hand up their ass?” Kico asked. “What does that have to do with love?”

“You’ve got these people from Moline,” Bill explained. He always had a hard time being calm when he felt an argument coming on. “They’ve been repressed all their lives, and now they’re going to be a little extreme, a little weird, but it will swing back. It’s like straight sailors when they get off a ship after a long time.”

When Bill got backed into a corner, he rarely admitted to the inadequacies of his own arguments. Kico sensed that Bill was being overly sensitive and defensive about the commercialization of gay sex, as if he were trying to justify the excesses to himself. Kico wouldn’t push the subject any further that day.

Indeed, the arguments came when Bill was having a more difficult time reconciling the gay community’s sexual Disneyland with the political aspirations he wanted his minority to achieve. The sex had started off with such camaraderie. There was a warmth and brotherhood to it. When he went to a bathhouse for the first time in Honolulu, he had felt very liberated. Here was a place you could do anything you wanted with nobody to slap your hand and call you a pervert. But in the mid-seventies, when red hankies sprouted from everybody’s pockets, something about it offended Bill’s native midwestern conservatism. “Is this what these people want to communicate to the world?” he wondered. “That they want to get fist-fucked or have someone piss on them?”

The gay sexual scene became progressively depersonalized: At first you’d sleep with a person, hug all night, talk and have omelettes in the morning. Then, you skipped the breakfast because just how many omelettes can you make before it gets boring? Then you wouldn’t spend the night. With the bathhouses, you wouldn’t even have to talk. The Glory Hole and Cornhole clubs came into vogue next. There, you wouldn’t even have to see who you had sex with. Bill’s leftist inclinations blamed it on corruption of money and businessmen. These places were created because there was money in them. Bill personally appreciated the convenience of the sex, sometimes making his way down to the giant bathhouse on 8th and Howard for Tuesday’s buddy night. Politically, however, the dehumanization of sex was troublesome.

Even more problematic was what happened when you got straight people into the act. In early 1981, Bill was at the center of a controversy around the Jaguar Bookstore, a sex club in the heart of the Castro district. The Jaguar was one of a dozen gay private sex clubs in San Francisco, doing far less business in books than in membership fees that allowed patrons to wander around dark back rooms. There, men could be found engaging in proverbially unnatural acts at just about any time of the day or night. The store wanted to expand to a third floor, but neighborhood heterosexuals had rallied against the zoning variance the expansion would require. As an aide to Supervisor Harry Britt, Bill Kraus had championed the sex club’s arguments, and Britt had accrued substantial criticism in conservative neighborhoods. To Bill, it was a matter of territorial imperative. If gays couldn’t call the shots in the Castro, their only liberated zone, where could they exert their power?

Still, the debate left him with a sour taste for the entrepreneurs of the gay sex industry. While the Jaguar owner had publicly pleaded that he was the victim of horrible anti-gay bigotry to rally gay political support, he showed no further interest in city politics once he got his variance. As far as Bill was concerned, the guy was a pig who was only interested in making money. He still didn’t regret the politicking, however, if only because he was convinced that straight people had no business getting involved in gays’ sex lives. It had taken a decade to build this sexual freedom in San Francisco, and they couldn’t give an inch or else it all might be taken away.

Kico thought that whole line of reasoning was stupid after Bill explained it to him one afternoon as they strolled down Castro Street.

“I still think it’s dirty,” Kico said.

March 30

S
T
. F
RANCIS
H
OSPITAL,
S
AN
F
RANCISCO

The pain pounded on both eyes, like heavy wooden mallets. Any movement increased the pounding, as if somebody wanted him to sit there and suffer through each excruciating pulsation.

Dr. James Ground water knew this was serious stuff and immediately ordered Ken Home to the hospital on a foggy Monday morning. Groundwater was now one of a panoply of specialists thoroughly baffled by Ken’s failing health. Groundwater had seen a lot of skin in his day, and he knew what was benign and what wasn’t. Whatever was causing Ken Home’s purple spots certainly was not benign. Never was this more clear than on that cloudy Monday morning when he admitted Ken to the hospital.

Ken had been suffering from unrelenting fevers for weeks now and complained of increasingly severe headaches and, today, that pounding pain. Ken had become testier with each passing month. He didn’t want any more tests; he just wanted to be told what he had. Meanwhile, he deteriorated. New lesions appeared on his face and palate in February. In early March, they began covering his lower back.

Groundwater thought it might be a blood vessel tumor and had sent specimens to a lab in Michigan, which was unable to make a diagnosis. A cancer specialist wasn’t helpful either. Within hours of Ken’s admission to the hospital, a neurologist was checking out his complaints of weakness. She ordered a lumbar puncture. The test revealed an even more baffling malady—cryptococcosis.

Groundwater thought he would drop when he heard the diagnosis. It explained the headaches but nothing else.
Cryptococcus,
he knew, was a parasite most commonly found in bird feces.
Cryptococcus-infected
pigeon droppings had fallen on San Francisco every day for a century. Why in March of 1981 should somebody suddenly come down with cryptococcosis?

The first diagnosis of Kaposi’s sarcoma in San Francisco arrived in Jim Groundwater’s office on April 9, 1981, from a pathologist at the University of California at San Francisco. Ken Home’s lesions were “consistent” with the disease, the pathologist said. The tumor also had invaded Ken’s lymph nodes. But Ken, Groundwater knew, was not suffering from classical KS. This was not the benign skin cancer that old Italians lived with for ten years. Groundwater started comparing notes with every pathologist and expert he could contact. Something else was ailing Ken, and he was going to die if Groundwater didn’t find out what.

April 4, 1981

C
ENTERS FOR
D
ISEASE
C
ONTROL,
A
TLANTA

This guy should go back to medical school if he can’t find some simple neoplasm, Sandra Ford thought. Maintaining her professional air, however, Ford asked the doctor again, in a different way: How did he come to have not one but two patients with
Pneumocystis carinii
pneumonia who needed pentamidine? This was a simple question, Ford thought. What was the underlying cause of immune suppression that had brought on the pneumonia?

The Manhattan physician, again, answered he didn’t know why the two young men had PCP. In fact, there didn’t seem to be any reason for their immune systems to be so out of whack. Still, they needed pentamidine because they weren’t reacting well to the sulfa drugs more commonly used for
Pneumocystis.

Ford figured the doctor was either incompetent or lazy. He probably didn’t have the patients’ charts in front of him and didn’t want to move his overpaid ass into another room to get them. But in the last eight weeks, she had filled five orders for adult male patients with unexplained
Pneumocystis.
All but one of them lived in New York.

U
NIVERSITY OF
C
ALIFORNIA
,
L
OS
A
NGELES

The fourth
Pneumocystis carinii
pneumonia patient at UCLA appeared in April, a black man suffering from what Dr. Michael Gottlieb could now identify as all the typical symptoms: swollen lymph nodes, fevers, weight loss, and a wicked case of candidiasis. Like the other three PCP sufferers, this man showed dramatically elevated levels of cytomegalovirus in his blood. The thirty-six-year-old was referred to Gottlieb by a distinguished West Los Angeles internist who had heard Gottlieb was studying gay men with just such immune problems. Gottlieb marveled at how fast news spread on the gay medical grapevine.

Dr. Joel Weisman had told him that the miniepidemic might be some strain of CMV gone wild or some new combination of CMV and another virus. No matter what it was, Gottlieb felt that with four patients, he didn’t have the luxury to collect data for the next two years before writing up an august article for a medical journal. People had to find out about this, Gottlieb thought frantically. He’d only been in L.A. since July, but he had one key contact.

Dr. Wayne Shandera answered the phone in his cramped downtown office at the Los Angeles County Department of Public Health and immediately recognized Gottlieb’s voice. The two doctors had been friends and residents together at Stanford and had both moved south in July. Shandera had ended up in L.A. on the first leg of a two-year stint with the Epidemiological Intelligence Service, the field investigative corps for the Centers for Disease Control. After three years in the San Francisco Bay Area, Shandera hated Los Angeles, though his spirits lifted whenever he and Gottlieb talked about collaborating on some project. Long before Gottlieb’s call, Shandera had suggested studying the immune response to infectious agents.

“Wayne,” Gottlieb said, “there’s something going on with
Pneumocystis carinii
pneumonia and CMV in homosexual men. Can you look into it?” Gottlieb was relieved Shandera was his friend, because somebody he didn’t know would probably think he was a crank caller.

Gottlieb described the cases. It sounded to Shandera as if the pneumonia victims must have had chemotherapy that had wiped out their immune systems. Once off the phone, Shandera mentioned the call to a colleague. She looked a little surprised and pointed to his desk.

“You’ve got a report of a CMV death sitting right there,” she said.

Shandera scanned the report. A twenty-nine-year-old attorney had died of cytomegalovirus pneumonia in Santa Monica last month. Health authorities had written it up for its novelty; CMV didn’t normally kill people. Wayne walked upstairs to the health department lab, where specialists were growing CMV cultures from the dead lawyer’s lung to see if there was anything unique about the CMV strain that had killed him.

This was important, Shandera knew, and the very reason he had volunteered for work in the medical world’s version of the Peace Corps. He would have preferred to be in some underdeveloped nation helping the truly disadvantaged, but, as he relayed his findings to Gottlieb, he sensed that what he was doing now was significant.

Armed with his county health department power to pull any patient’s medical records, Shandera launched his car down the crowded Santa Monica Freeway toward the hospital where the attorney had died. An autopsy, it turned out, had found another organism in the man’s lungs, something that wasn’t mentioned on the death certificate. Maybe it was because a diagnosis of
Pneumocystis
would have made the death seem even stranger.

Any unusual outbreak of a disease is, in medical jargon, an epidemic. With five cases of
Pneumocystis
diagnosed in five gay men over the past few months in just one city, the phenomenon Gottlieb and Shandera were studying fit the necessary criteria for an epidemic. One man was already dead. Gottlieb had the queasy feeling that there was something bigger, something catastrophic lurking behind this. Five cases of an uncommon illness in just a few months meant that the disease was no longer uncommon among gay men, Gottlieb thought, and chances were that it was going to get a lot more common in the months to come.

He also knew it would be good to get out a medical journal report on this before anybody else did. He called the nation’s most prestigious journal, the
New England Journal of Medicine,
and talked to an associate editor.

“I’ve got something here that’s bigger than Legionnaire’s,” he said. “What’s the shortest time between submission and publication?”

The editor explained it would take three months to send the story around to a panel of expert reviewers who would make sure that it was scientifically sound. There would be another delay between the time the review was finished and the publication date, he said. He didn’t need to tell Gottlieb about the ironclad rule that the journal, like virtually all major scientific publications, maintained about the secrecy of material about to be published. If there was any leak whatsoever to the popular press about the research, the journal would pull the story from its pages.

“We’d like to see it,” the editor concluded. “Sounds interesting, but there’s no way we can guarantee that it will be published.”

But this is an emergency, Gottlieb thought as he hung up the phone in frustration. You don’t just run business as usual in an emergency.

It was an observation Gottlieb would recite almost daily in the difficult years ahead. For this young doctor, about to be credited with the discovery of the public health threat of the century, the thought became a grim mantra for the AIDS epidemic.

April 14

C
ENTERS FOR
D
ISEASE
C
ONTROL
,
A
TLANTA

Sandy Ford wanted to scream at the stupid doctor. For the second time in ten days, the same Manhattan physician was ordering pentamidine for two men with unexplained
Pneumocystis.
Not only that, these were the same two men who already had been treated with the drug. Sandy filled eighty or ninety pentamidine orders a year, and she never had filled two orders for the same person. The drug works and the
Pneumocystis
goes away. She also knew that the Food and Drug Administration reviewed the records she collected on drug orders. The antibiotic was only available on an investigational new drug license. Its uses were strictly controlled, and too many unexplained diagnoses on her annual FDA report would raise questions. She was sending in too many incomplete forms, and she didn’t know what to do about it.

April 17

L
OS
A
NGELES

As the naked body stirred beside him, Cleve Jones reflected on his favorite aspect of gay life, that you could meet someone and in such a short time become so intimate. Cleve never viewed his sexual adventures as conquests, like many of his friends; instead, they were little romances, brief studies into another idea of what a human being could be. At twenty-six, Cleve still had never had what he could call a long-term relationship, but his life was filled with romances, like the affair with Frank, the handsome lawyer from Long Beach. They had met at the state Democratic Convention in Sacramento last year. Frank was a successful attorney involved in gay politics, very bright, and most importantly, very progressive. Cleve had gone to work for San Francisco Assemblyman Art Agnos and was trying to line up party regulars for a state gay civil rights bill that Agnos had introduced to every legislative session since 1977. Frank recognized Cleve from a CBS documentary on gay politics in San Francisco. Cleve loved the idea of another romance, and they were off. Of course, it couldn’t go anywhere because Frank had his lover back in Long Beach, but they had stolen afternoons when Cleve was in L.A., like today, and possibly, some more weekends in San Francisco or at Democratic gatherings.

Cleve was fresh from an affair with a prominent Democratic legislator from a midwestern state, and, a week after Frank returned to Long Beach, Cleve fell for an independent filmmaker who lived in Marin County. That’s the way romances passed for Cleve.

Frank wasn’t feeling well that day, Cleve recalled later, which is why Cleve never forgot that warm afternoon in Los Angeles when they made love, after a leisurely lunch. It was April 17, 1981. Good Friday.

April 22

U
NIVERSITY OF
C
ALIFORNIA,
S
AN
F
RANCISCO

The sunny morning turned warm and pleasant. From the crowded huddle of concrete and glass medical buildings, one could see the Golden Gate Bridge and the Marin headlands, which were turning deep green after heavy winter rains. Dr. Marcus Conant walked the half-block to the hulking gray UCSF Ambulatory Care building from the office where he had run his thriving dermatological practice for eleven years. He couldn’t get last night’s phone call from his old friend, Alvin Friedman-Kien, out of his head.

Alvin said he had discovered a new outbreak of Kaposi’s sarcoma in New York. He had embarked on the research after he had seen two KS patients within a matter of days in his office at New York University. He started checking with other doctors and quickly learned that a number of Manhattan hospitals were treating men suffering from this cancer. The victims were all gay, he confided, and a lot of them were into pretty heavy stuff like fist-fucking.

Conant immediately thought back to 1969 when he was studying for his dermatology boards. He remembered repeatedly reviewing the pathology pictures of KS, worrying that the tumor was so rare that it would be just the slide he wouldn’t recognize on the test. Since then, he’d seen KS maybe half a dozen times in his career, usually at symposia or presentations.

The cancer was particularly interesting to both Marcus Conant and Alvin Friedman-Kien because they were herpes experts and African KS had been linked to a herpes virus, CMV. This research was intriguing in that it might establish one of the first links between a virus and cancer, something scientists had sought for years. They talked about the Kaposi’s sarcoma-cytomegalovirus connection, and Conant promised to ask about KS the next day, when he was the featured speaker at the monthly UCSF conference of dermatologists.

Jim Groundwater was stunned when Conant asked if anyone had seen any unusual cases of KS. Groundwater had struggled for months before finally getting a KS diagnosis on Ken Home just two weeks ago, and now the same thing was turning up in New York.

“I’ve got a case of KS in a gay man over at St. Francis Hospital right now,” he told Conant.

Oh God, Conant thought. This means trouble. At that moment, the realization was born that a new epidemic had arrived in San Francisco.

The next day, Groundwater called Friedman-Kien to tell him about Ken Home. Groundwater was surprised at how similar Ken’s life-style was to the stricken New Yorkers’, right down to the habit of fisting. That afternoon, a letter arrived in the mail from the eminent New York dermopathologist with whom Groundwater previously had consulted.

“It is difficult to determine whether the infectious agents play any role in inducing this lesion,” wrote Dr. A. Bernard Ackerman, who added with surprising prescience, “We have recently seen numerous cases of Kaposi’s sarcoma in young homosexual men and, it is our opinion, that these lesions may well be induced by an infectious agent.”

April 24

After talking to Jim Groundwater, Dr. John Gullett, an infectious disease expert who had been treating Ken Home, decided to call Atlanta to report Ken’s Kaposi’s sarcoma and
Pneumocystis
pneumonia to the Centers for Disease Control. None of the CDC doctors he talked to, however, seemed particularly interested in his story. Gullet got the feeling he was being treated as a crank caller. At the CDC, nobody would later recall the day that Ken Home became the first reported victim of a frightening new pestilence.