And the Band Played On
The end of Silvana’s story, however, was no new life and was emblematic of the complicated problems that intravenous drug users presented in the AIDS epidemic. These people weren’t optimistic gay men who would spend their last days doing white-light meditations with their Shanti Project volunteer; they were addicts.
With a terminal diagnosis, Tony Ford had little incentive to quit drugs, and he provided little encouragement to Silvana. Within weeks, Silvana disappeared from her drug rehabilitation program. Two months later, she was arrested for petty theft, the first of five more arrests for prostitution and drug-related charges in the next year.
Tony Ford survived four bouts with Pneumocystis before he died of kidney failure on June 20, 1985.
Silvana Strangis died on January 24, 1986, during the eleventh day of her first bout with cryptococcosis. Her remains were interred in the middle-class San Francisco suburb where her story had started, back when she was the beloved daughter of an Italian family and a New Age was dawning.
52
EXILES
January 20, 1985
CASTRO STREET, SAN FRANCISCO
The crowd surged up and down Castro Street, blowing horns, waving banners, and chanting the ubiquitous mantra: “We’re number one. We’re number one.”
All day, the bars of Castro Street, like bars across the United States, were packed with fans awaiting the last touchdown. In Washington, President Reagan, freshly sworn in for his second term, was plopped at a TV set to watch the Super Bowl face-off between the San Francisco 49ers and the Miami Dolphins. Castro Street was vaguely comforted by the connection it briefly shared with the rest of the world; it was an increasingly rare feeling, now that gay people were suffering the full weight of a situation about which most heterosexuals were oblivious.
When the final pass was thrown and the 49ers had won their second Super Bowl in three years, San Francisco was engulfed in the wildest celebration since the day World War II ended. In no neighborhood was this abandon more pronounced than in the Castro, where people were grateful for any cause to celebrate. Police quickly closed Castro Street to traffic, surrendering the thoroughfare to the swelling throng, waving their red and gold banners. They climbed streetlights and even formed a cancan line atop a trolley car that was trapped amid the crowd.
From the doorway of Bear Hollow, Cleve Jones cheered the crowd on. He didn’t care a whit about football, but large crowds gathered for any reason excited him. Cleve also was thrilled that twenty-one-year-old Todd Coleman had taken an inordinate interest in him. Todd had fine brown hair, beautiful eyes, and delicate features that Cleve found alluring. He also was a bona-fide fan who seemed to know everything about Cleve’s life, a quality that Cleve found downright irresistible.
Cleve had met Todd in the Bear Hollow during Super Bowl halftime. Cleve pressed the young man for his phone number, but Todd was evasive, so Cleve stuck with him. When Todd and a group of friends left for a night of carousing, Cleve tagged along. Within a few hours, the pair retreated to Cleve’s apartment a block off Castro Street, where they spent the night.
A few days later, Cleve was back in Bear Hollow sipping vodka tonics when he saw Todd come into the bar with a group of friends.
“See that cutie over there,” Cleve said to an acquaintance, adding with a note of triumph: “I went out with him.”
“Yeah, he’s got AIDS,” Cleve’s friend said.
“What?”
Cleve’s friend said Todd was living at the Shanti Project residence for homeless AIDS patients.
Suddenly, the pieces fit together. Cleve understood why Coleman was evasive about his phone number and why he seemed to know everything about Cleve’s work in organizing the AIDS Foundation.
Cleve was stunned, and he later confronted Todd. The young man admitted he had AIDS. He explained that he had always admired Cleve and had followed his career for years, reading everything he could find on the young activist. As soon as he saw Cleve on Super Bowl Sunday, he’d known what he wanted to do. Cleve hadn’t seduced him; he had seduced Cleve.
“Why are you behaving this way?” Cleve demanded. “You have a responsibility to your partners to let them know that you have AIDS. Even more important, you have a responsibility to protect yourself.”
“They say at the Shanti Project that it’s important for me to have sex,” Todd said.
Cleve felt the tide of despair begin to shift again in his stomach. Everybody, it seemed, was going crazy.
For months, Cleve’s spirits had been sinking. Hardly a day went by that some crony or boyfriend was not diagnosed. His own health had teetered on the brink of AIDS for a year now. He had contemplated an escape to Hawaii for months. The incident with Todd Coleman cemented his determination to leave San Francisco. Everybody was either dying or going crazy, and he’d die or go crazy too if he stayed.
Cleve periodically called his mother in Arizona to empty his heart; he called her during January, too, to tell her about the death of his old boyfriend, Felix Velarde-Munoz. Gently, Marion Jones began talking about the young men with whom she had graduated from high school over forty years before, during the darkest hours of World War II. “AH the boys I knew went off to war and most of them didn’t come back,” she said. “The ones who did survive were damaged. That must be what it’s like for you.”
Cleve agreed. That was what it was like.
Other thinkers in the gay community believed the homosexual plight was less like being in a war than like living with terrorism. At any time, without any coherent reason, the virus could emerge from its victims’ blood and violently seize their lives. There was a terrifying amorality to the epidemic that went far beyond the articulated ideologies that clashed in war.
Gay men who had lived with terrorism in countries like Israel argued that AIDS was an even more insidious enemy. They said that people living in a country stricken by terrorism have a camaraderie, a sense that they need to stick together to survive.
But the stricken in America’s gay community were exiles. Most heterosexuals cared about the epidemic only when it appeared that it might affect them. Rather than bring the nation more together, the epidemic had driven Americans further apart. To gays, who emigrated to mainstream society daily to work, the heterosexual life-style seemed surreal. Here people wondered whether they could afford a second color television set or if they should have a child. Gay life now consisted of more prosaic concerns, like whether your lover was going to die next week or if one day you would wake up and find a purple spot that foretold your own death.
Moreover, for homosexuals caught in this cruel new reality, there was no one to say, “Hang in there.” Instead, there was a prevailing sentiment that was sympathetic and at times compassionate but still detached and ultimately uncaring, as if to imply that, somehow, this whole mess is your own fault.
January 23
Bill Kraus’s older brother Mike had rented a limousine stocked with champagne and Edith Piaf tapes to drive Bill and his friends to San Francisco International Airport. With his new superstitious bent, Bill at first did not want to be sent off in a black car, fearing it looked like a hearse and was a bad omen. Nevertheless, he was coaxed into the backseat, and as he sipped champagne, he joked that if he were to be in exile, it might as well be Paris.
Bill’s friends knew he was cloaking his fears. He had no idea whether he would be accepted into the HPA-23 trials. Even more pressing, he still didn’t know whether the medication would work.
The Next Day
PARIS
Paris was in the grips of the coldest winter in a half-century when Bill and his friend Sharon Johnson arrived. The pair spent their first day finding an apartment. On the second day, they went to the World War I American military hospital on the outskirts of Paris to see Dr. Dominique Dormant about HPA-23.
Dormant already had heard about Bill Kraus’s case. It struck Sharon that the Frenchman thought Bill was much more important than he actually was, an illusion Bill was not going to shatter. D
ormant described the comparative benefits of AIDS drugs on trial, such as isoprinosine, interferon, ribavirin, and HPA-23.
“This is not a cure,” he warned. It would only impede the virus, and Bill would probably have to stay on the drug indefinitely. The virus appeared to come back as soon as patients went off the medication, and that, most likely, would bring the demise of the patient.
“I want to try it,” Bill said. “I want to live.”
Dormant said Bill could take his first shot the next week.
In the United States, no issue frustrated AIDS clinicians and researchers in the early months of 1985 more than the lack of experimental treatments to offer AIDS patients. In no area of AIDS research was the paucity of funds having a more devastating impact.
Dr. Donna Mildvan at Beth Israel Medical Center in New York was receiving five calls a day, from lovers, friends, and relatives of AIDS patients, pleading for a treatment, any treatment, that might work. A day rarely went by without some mother sobbing, “Please, doctor, save my son.”
Officials at the National Cancer Institute assured everyone that they were screening every possible drug for experimental trials in AIDS patients. What they didn’t reveal was that this federal screening program consisted of Dr. Sam Broder and two technicians; a federal hiring freeze prevented the NCI from augmenting this program.
The lack of trained retrovirologists and money for retrovirology labs also proved an impenetrable barrier to drug testing. To determine whether an anti-viral drug was any good at halting viral replication, scientists needed to perform viral isolations on every patient. The cost of one such isolation was $700. Even the NCI, which had the largest budget of any medical research institution in the world, found the cost of extensive drug testing and viral isolations to be prohibitive. Even if the money did exist, there were few facilities capable of performing the isolations and few retrovirologists to do the work. In New York City, for example, there was only one laboratory capable of performing the LAV viral isolations.
The lack of such laboratories was a legacy of the cutbacks of the first years of the Reagan administration. In the early 1980s, when retrovirology grants dried up, scientists simply stopped learning how to be retrovirologists. There wasn’t any future in it. Now, research institutions across the nation were desperate for retrovirologists, but there were few to hire. It would take years to train scientists and establish laboratories, once funds were made available.
When the NIH held a meeting in Bethesda to discuss drug studies, Don Francis complained, “We don’t need more meetings. We need labs, and we need money.”
Neither, however, were forthcoming.
DUBLIN STREET, SAN FRANCISCO
“I feel like a leper,” Frances Borchelt told her husband and children when she returned from the hospital. “None of the family will come to see me. I don’t want to go out of the house.”
“Don’t be depressed, Mom,” Cathy Borchelt answered. “Get angry. We’re going to fight this.”
Frances didn’t feel angry. She felt tired and ill and alone. Although her psoriasis had receded while she was undergoing antibiotic treatment for Pneumocystis, it returned virulently when Frances got home. When Cathy helped her mother into her first shower after leaving the hospital, she was staggered at her mother’s appearance. Frances had shrunk to ninety-eight pounds. Her tailbone protruded from her baggy skin. Cathy thought she looked like the pictures of concentration camp victims she had seen in World War II books.
The family soon fell into the same confusion that gay men had faced about their own vulnerability to the syndrome. The doctors told them to take precautions, not to use the same dishes as Frances and to wear gloves when they washed her dishes and laundry. For all they knew, they might already have been infected with the virus. There was no testing yet to calm their fears.
Cathy started researching transfusion AIDS. Dr. Marcus Conant told her about the T-cell tests at Stanford University and the controversy about hepatitis core antibody testing. Conant also told her the family should hire a lawyer.
“Why didn’t anybody do anything?” Cathy asked friends.
By coincidence, a series of dramatic transfusion-AIDS stories seized public attention in San Francisco during the early months of 1985. One was a Roman Catholic nun, Sister Romana Marie Ryan, who had broken her hip while sliding into home base during a softball game. During a hip replacement operation in July 1983, the sixty-six-year-old sister was transfused with infected blood. When announcing the death, her priest said Ryan had spent her final days in “excruciating pain,” praying for the person who donated the blood to her and for all people who were suffering from AIDS.
Such stories raised the stakes in the drama unfolding around the release of the HTLV-III antibody test. On January 31, Dr. Mervyn Silverman made good on his promise to announce the objections of the American Public Health Association and the U.S. Conference of Local Health Officers. The groups wanted funding for the alternative test sites for AIDS blood tests, Silverman announced, and the federal government’s refusal to provide them could result in the contamination of the blood supply.
The officials at Secretary Heckler’s office and the FDA had avoided making any decision on funds for the alternative test sites during the months of negotiations, but they were on the phone to Silverman within an hour of the first reports of his press statements, assuring him they would make $12 million available for the program. Then they delayed release of the test for two weeks so the program could be put in place.
Although this settled the public health questions surrounding the test’s licensure, it did not resolve the civil rights questions that troubled gay leaders. The federal government had made no provisions about confidentiality of blood test results. As battle lines hardened, the conflict became a classic confrontation of public health and civil liberties. The Lambda Legal Defense Fund, a New York-based gay legal group, threatened to block release of the test in court. How could the government release a test that could have such devastating impact on so many American lives, without any safeguards? they asked. At the CDC, doctors who had worked on transfusion-AIDS research were dumbfounded. How could these people threaten to halt a test that could clearly save lives? By mid-February, the two sides had reached a standoff.
UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
For the past year, the cooperation that had marked the relationship between Marc Conant’s AIDS Clinical Research Center at UCSF and San Francisco General Hospital had been dissipating. With the hospital’s growing international reputation and prestige, its researchers had developed leverage for their own government grants. They also were mindful that the focus of local AIDS work had shifted to the county hospital in large part because UCSF officials were uncomfortable with the UC Medical Center becoming a focus for AIDS studies.
Marc Conant continued to argue that the medical center should carry more of the city’s AIDS burden, if for no other reason than because of its geographic location on the edge of the largest concentration of gay men in the Western world. Conant’s own influence, however, was waning. Ever since he had gone directly to the legislature for state research funding, over the heads of UC administrators, he was something of a marked man at the university. And so he was not surprised to be told at a meeting, on a cold January day, that it would be best for the university if he resigned as director of the Clinical Research Center. The university, of course, presented reasonable arguments as to why Conant should step down. He was a clinical professor, and the center would have more eminence if the title of director was conferred on a full professor with broader scientific credentials, they said.
Virtually everyone close to AIDS research, however, knew the other reasons for the shift. University officials continued to worry that they were losing top applicants for residencies because of San Francisco’s reputation as the center of the AIDS epidemic. Four years of Conant’s dire predictions had succeeded in convincing university officials of the skyrocketing number of AIDS cases that would c
ome from the nearby Castro neighborhood, so the future did not look more promising to anxious UCSF administrators. Other UCSF scientists were being told to tone down their AIDS pronouncements, and enthusiasm for AIDS research dropped among university officials. Removing Conant would rid the university of a troublesome maverick whose priorities did not lie within academic politics.
The university no longer had to worry about the political ramifications in the gay community of Conant’s departure. Conant’s role in opposing bathhouses and pushing for an aggressive education campaign had made him persona non grata among most gay political leaders as well as among the gay doctors in the Bay Area Physicians for Human Rights. Hardly an issue of the Bay Area Reporter came out without some personal attack on Conant.
The dean who accepted Conant’s resignation assured Conant that it was what was best. Conant recalled, however, that this was the dean who also once observed, “At least with AIDS, a lot of undesirable people will be eliminated.”
UNIVERSITY OF CALIFORNIA, LOS ANGELES
Dr. Michael Gottlieb had spent the past two years pleading for an AIDS clinic, but UCLA administrators wanted no part of it. When they finally gave him an office in which to see his patients, Gottlieb could scarcely believe the site—in the corner of the old Veterans Administration Hospital that had been largely abandoned when the newer hospital was built next door. A trip to Gottlieb’s office took patients through a dusty and deserted lobby and down dank hallways past gutted rooms. At the sound of footsteps, huge cockroaches scurried out of the walls, many of which were torn apart. This clearly was a place for patients the university was not enthralled about treating. Gottlieb had to remind himself that the University of California system was not one of the worst places for AIDS research; it was among the best.