And the Band Played On

by Randy Shilts

  After a week of soul-searching, Cleve edged back into the room where people shared their experience, strength, and hope in their efforts to recover from the addiction. When somebody asked if there were any newcomers at the meeting that night, Cleve inhaled deeply and said the words that he had known for so long but had never admitted to himself.

  “My name is Cleve,” he said, “and I am an alcoholic.”

  LUXEMBOURG GARDENS, PARIS

  After the bitterly cold winter, Bill Kraus was elated at the coming of spring. He had grown increasingly disenchanted with Paris and fretted constantly about running out of money and returning to California a pauper. In April, Representative Sala Burton had taken Bill off the congressional payroll. Although ailing aides routinely keep their congressional jobs, Burton had been persuaded to fire Bill because he was out of the country. Supervisor Harry Britt and a number of Bill’s friends had sent out a fund-raising letter for contributions to a Bill Kraus Trust Fund. However, that effort became controversial when the Bay Area Reporter, still angry at the role Bill played in the bathhouse controversy, ran an editorial condemning the fund-raising as elitist.

  The only advantage to living in Paris, Bill decided, was that, in France, AIDS was considered to be just another disease, like leukemia. The mere utterance of the word did not elicit the visible reactions it engendered among Americans. Still, Bill was lonely for his friends, and he longed to return to San Francisco.

  Bill was also unhappy at the course of his treatment. His doctors were less enthusiastic about HPA-23 and were urging him to start taking isoprinosine, a drug believed to act as an immune system booster. The suggestion upset Bill because he had pinned his entire hope for survival on HPA-23. Even the possibility that it might not be a panacea enraged him, cutting to the core of his denial and bargaining with his AIDS diagnosis. In early May, Bill’s spirits sank further; several new lesions appeared on his face.

  When his friend and housemate Ron Huberman arrived in France for a month-long visit, Bill was visibly relieved. Together, they wandered through the gay neighborhoods of Paris and dined with other San Franciscans who had come for the HPA-23 treatments.

  “Maybe we should sell our house in San Francisco and just move here,” Ron suggested as they walked through the Luxembourg Gardens. “I love Paris. You’d be near the Pasteur. We could get jobs here.”

  “No, I want to return to San Francisco,” Bill said. “That’s where I want to…”

  Bill paused.

  Ron could fill in the blank himself.

  “…That’s where I want to be,” Bill continued. “I’m really lonely. I can’t bear to not be with my friends.”

  “When you want to go home, just go,” said Ron. “We’ll all be there for you.”

  The pair walked among the statues and hedges until Bill broke the silence.

  “I don’t think I’m going to make it,” he said simply.

  It was the first time Ron ever heard Bill confide his fears about dying. In fact, ever since his diagnosis, Bill had ordered his friends to not even think about the fact he might die, insisting that their mental images of him in a deathbed would harm his health. Many of Bill’s friends considered this idea to be flaky, but fundamentally they wanted to deny Bill’s condition as much as Bill did, so they complied. Ron was relieved that Bill seemed to be entering the acceptance stage of his terminal diagnosis. Later that night, however, Bill seemed embarrassed.

  “Disregard everything I said earlier,” he told Ron. “I’m uptight.”

  Bill seemed most comfortable angry, and throughout Ron’s visit, he railed about the lack of treatment programs in the United States. About 100 Americans were part of the AIDS exile community in Paris, making long daily treks to Percy Hospital on the edge of the city for their shots of HPA-23.

  From his apartment on the Quai des Celestines overlooking the Seine, Bill furiously wrote letters to his friends and contacted reporters, urging them to write stories on treatment issues. Less than 10 percent of America’s AIDS patients were being offered any kind of experimental drug for AIDS. Only an infinitesimal portion of the 100,000 people estimated to be suffering from ARC were being treated, even though scientists agreed that treatments probably would be vastly more successful on such patients, given the fact that their immune systems had yet to suffer the devastation that precedes an AIDS diagnosis. Patients with AIDS and ARC were told to simply wait until the carefully controlled drug studies were completed before trying the experimental drugs—even though many knew they would be dead before that happened.

  The federal government continued to be indifferent to the problem. In early May, the Food and Drug Administration announced that it would permit Newport Pharmaceutical International to supply isoprinosine to doctors under protocols for investigational drugs. In order to meet the FDA requirements, however, the company calculated that it would need to spend about $2,000 in blood tests and other costs for each patient taking the drug. Government funding, of course, was not available for widespread tests. Not surprisingly, Newport announced that it could not permit more than a handful of patients in the United States to use the drug. Meanwhile, James Mason, Acting Assistant Secretary for Health answered congressional inquiries about government AIDS treatment efforts with the assurance that” the Public Health Service continues to give the development of new experimental modalities for the therapy of AIDS the highest possible support.”

  In San Francisco, desperation fueled a vast underground network to supply AIDS and ARC patients with the two most popular underground drugs, ribavirin and isoprinosine. Both drugs were being used in experimental trials on limited numbers of people in the United States, although they were not licensed for general distribution. They could, however, be purchased at any drugstore in Mexico. A Berkeley group calling themselves the Tooth Fairies had put together a guide on how to conceal the drugs from customs agents at the border. In the hands of less socially conscious profiteers, the cost of these AIDS drugs skyrocketed in a bustling black market. A twenty-tablet box of isoprinosine could be purchased in Mexico for $2.50. In San Francisco, anxious AIDS sufferers paid as much as $1.20 a tablet.

  Bill Kraus was angry that the AIDS organizations, which had spent so much time defending bathhouse owners, could not take it upon themselves to fight for wider availability of AIDS treatments. He also implored his friends in political groups to take up the cause. “This is absurd,” Bill complained. “People are supposed to go to the United States for treatment. We shouldn’t have to be leaving.”

  Throughout his stay in Paris, Bill had largely avoided gay night life. Ron Huberman was more of a party animal, however, so Bill accompanied him to the bars and discos for some rare nights out. At the popular dance palace, Haute Tensione, Bill met a handsome young man who showed some interest in him. When Bill said he was from San Francisco, the conversation immediately shifted to AIDS.

  “Is this really a terrible thing, or is it something to moralize against us?” the Frenchman asked Bill.

  Bill allowed that the epidemic was very real.

  “Is it true they have closed all the bars and the bathhouses?” he asked incredulously.

  Bill explained the intricacies of the unsafe sex ban and made it clear he thought it was long overdue. In Paris, similar issues were emerging. A number of Parisian gay bars had dark back rooms with enough sexual activity to match the heyday of any San Francisco bathhouse, orgasm for orgasm. The police were demanding that gay bar owners turn the lights up in the back rooms. The local gay press declared this fascistic.

  “I think it’s horrible,” the Parisian said, “the way they would moralize to us.”

  Bill was overcome with a sense of deja vu. He had had this conversation hundreds of times in San Francisco. He wanted to shake the young man and shout: “For God’s sake, don’t make the same mistakes we did.”

  By May 1985, concern about AIDS had swept five continents. European health authorities reported nearly 1,000 AIDS cases. More than 300 were French, 162 wer
e from West Germany, and Britain reported 140. Austrian health authorities reported the diagnosis of Pneumocystis in a one-year-old infant. The infant’s mother apparently was a prostitute, and her child was the first baby AIDS case in Europe. In Sweden, where 8 were dead and 300 showed ARC symptoms, authorities recommended adding AIDS to the venereal disease laws. Under those laws, the government could impose a two-year prison sentence on any AIDS sufferer who knowingly partook in sexual activity that might spread the disease. In England, the government’s chief medical officer declared AIDS the most serious health threat to that nation since World War II. Health Minister Kenneth Clarke announced new regulations to give British magistrates the power to order an AIDS sufferer into hospital isolation if he persisted in engaging in sexual acts likely to spread the disease.

  Sensational stories about AIDS in the flamboyant British press inflamed anti-gay prejudice. One prominent gay activist was attacked outside a London subway by a gang of knife-wielding youths who suggested that he should be killed before he could spread “the gay plague” to others. When a London gay switchboard’s lines broke down because they were so overwhelmed with AIDS calls, telephone company employees refused to fix them because they were afraid of contracting AIDS from the wiring.

  In the strangest twist to English AIDS history, the guide to British aristocracy, Burke’s Peerage, announced that, in an effort to preserve “the purity of the human race,” it would not list any family in which any member was known to have AIDS. “We are worried that AIDS may not be a simple infection, even if conveyed in an unusual way,” its publishing director said, “but an indication of a genetic defect.”

  The death of the first AIDS patient on mainland Asia sparked AIDS panic in Hong Kong. Health authorities discovered, however, that their efforts to trace AIDS were hampered by Hong Kong’s draconian laws against homosexuality. Under local law, gays faced life imprisonment. Not surprisingly, when the government set up a hotline to answer AIDS questions, few people would give health workers their names and addresses so they could be mailed risk-reduction guidelines. Doing any sort of epidemiology or contact tracing also was rendered impossible by the severe punishments for homosexual behavior. A gay businessman warned that if the government did not decriminalize homosexuality, “it will be guilty of murder.”

  Health authorities worldwide braced for growing caseloads, given evidence that the virus already had spread widely, even in nations that had yet to see many AIDS cases. In Montreal, 28 percent of gay men in one study were found to be infected with the AIDS virus. Between 20 and 30 percent of gay men in a Melbourne, Australia, study were infected. In England, an organizer of Britain’s major AIDS organization, the Terence Higgins Trust, bluntly advised English gay men to avoid sex with any Londoner after one study found that one-third of the city’s gay men were infected with HTLV-III.

  The governments that were most intransigent about acknowledging the AIDS problem were those that were widely believed to be hardest hit. Although African health officials claimed only a handful of AIDS cases, one CDC staffer reported in March that there were 11,000 AIDS cases in Zaire alone. The huge number of prostitutes infected with the AIDS virus in such nations as Rwanda and Uganda suggested that the heterosexual spread of “slim disease” continued unabated.

  There was a familiar element in the policy questions that rose around AIDS in western Europe. By early 1985, Denmark had the highest per capita rate of AIDS in Europe. One study found that 36 percent of gay men were infected with the AIDS virus, and gay men who went to bathhouses were being infected at a rate of 3 percent a month. Clinicians like Dr. Ib Bygbjerg felt that bathhouses should be closed and the country should include AIDS in its venereal disease laws, as Sweden had. However, health authorities made no move without approval of the well-organized gay community. Still unimpressed by the relative handful of cases in Denmark, homosexual leaders viewed the AIDS threat as homophobic hyperbole and persuaded authorities that bathhouse closure would be an unacceptable infringement on their civil rights.

  As case after case came to Rigshospitalet, the hospital where Dr. Grethe Rask had died eight years before, Bygbjerg despaired. “Gay radicals are holding public policy hostage to their politics,” he complained. “We need to stop this disease, and we’re not being allowed to.”

  In Paris in early 1985, Dr. Willy Rozenbaum had examined a lymphadenopathy patient and had given his opinion that the man should not continue to have sex. The man had been outraged at the suggestion.

  “It’s my right,” he said.

  Rozenbaum had argued, but he could see he wasn’t getting anywhere.

  There was, of course, no question that this man was infected with the AIDS virus. Indeed, his body was home to the progeny of the most famous AIDS virus in the world, because it was from his lymph node that the Pasteur Institute had cultured the first isolate of LAV in early 1983.

  May 17

  DUBLIN STREET, SAN FRANCISCO

  The week-long hospitalization at the University of California Medical Center in San Francisco did not cure Frances Borchelt’s brutal psoriasis. Bob Borchelt felt his heart would tear apart, watching his wife return to her bed in the home where they had shared so many happy years. Sometimes, Frances sat in her orange overstuffed chair in the living room, but she’d shoo away anybody who tried to give her a hug.

  “You don’t want to come near me, guys,” she’d say.

  Frances was no longer interested in food or drink, so Cathy or Bob thought of all kinds of imaginative ways to feed her. They methodically marked the ounces of water she drank on a jar; every gulp became a small victory.

  At times, it seemed the grandmother’s mind was going. She had proficiently worked her daily New York Times crossword puzzle for years, but suddenly she found it impossible to think of the right words and maintain her concentration. It was hard even to hold a pencil.

  Throughout the last weeks of May, it seemed there was no end to the litany of ailments that struck Frances Borchelt. She had severe lymphadenopathy, and the doctors had now diagnosed a blood disease, idiopathic thrombocytopenic purpura, as well. She also had mastitis and oral thrush.

  Still, Frances tried to act as if she could live a normal life. Every morning, she made her bed, as she had always done during her four decades of marriage. Now, however, tidying the sheets sometimes took forty-five minutes; she just didn’t have the energy. By the time Frances Borchelt developed a coarse cough in the first few days of June, Bob, Cathy, and the rest of the family had no doubt that the end was near.

  On Monday, June 10, the family took Frances Borchelt back to Seton Medical Center to be treated for bronchial pneumonia. Her lungs had filled with fluids, and she sweated continuously from fierce fevers. After the hospital priest administered the last rites, Frances looked up to Cathy and asked, “Who was that?”

  As the days passed, she began muttering to herself. Cathy noticed that, at times, the babbling had all the inflections of a conversation. At one point, she turned away from her imaginary interlocutor and asked Cathy, “Why am I sick?” Next, she fell into a coma.

  On Saturday, June 15, Frances Borchelt went blind.

  Frances had been adamant that she did not want to be buried with her wedding rings. As her body began to fill with fluids and bloat, Cathy decided it was time to remove them. However, her mother’s fingers were already so swollen, the hospital had to call custodians to cut the plain bands of white gold from her fingers. After that, Frances’s muttering stopped.

  Weeks before, the blood bank lawyers had scheduled a June 20 interview with Frances so they could take her deposition for the family’s negligence lawsuit against Irwin Memorial Blood Bank. When attorneys heard that the woman was in the hospital, they asked to reschedule the appointment. The request made Cathy Borchelt angry.

  “They should be forced to come here and see what actually happens to somebody who gets AIDS,” she said. However, she did not prevail.

  Bob Borchelt sat with his wife all day on Monday, June 1
7. She had drifted into a deeper coma, and the nurses, seeing Bob’s exhaustion, suggested that he go home and rest. They’d phone if anything happened, and the call came not long after Bob got back to Dublin Street. Frances was dead.

  On the day that Frances Borchelt died, the Centers for Disease Control announced that the number of Americans stricken with AIDS had surpassed 11,000. New cases could now be expected at a rate of about 1,000 a month. As of June 17, the CDC said, 11,010 Americans had contracted AIDS and 5,441 had died.

  On June 21, AIDS patients at George Washington University Hospital opened their eyes to see a woman in a white linen gown moving among them. She wore no mask or gloves and was not afraid to approach their beds and ask the young men about their illness. Mother Teresa came to visit the AIDS patients directly from the White House, where President Reagan, who had yet to acknowledge the disease, had awarded her the Medal of Freedom.

  Although the dramatic events of the next five weeks would overshadow such gestures, it was apparent even in the first days of the summer of 1985 that wider interest in the problem of AIDS was growing. The problem was becoming too vast to ignore.

  Religious leaders had played a key role in demanding more attention for AIDS. In San Francisco, Episcopal Bishop William Swing delivered a seminal sermon in which he argued that if Jesus were alive in 1985, he would not be standing with the moralists condemning gays but with the people suffering from AIDS. One of the things that made Christ so compassionate, he said, was the fact that he cast his lot with outcasts.

  The new scientific understanding of the virulence of the AIDS virus prompted an unprecedented action at the American Medical Association’s mid-June national convention. Although the AMA had a long-standing policy against promoting funding of specific medical research, the House of Delegates voted to put the AMA on record as seeking more funds for AIDS research. The resolution passed overwhelmingly with little debate. As one proponent explained, “We now realize that this is not just another disease, but a major epidemic having a serious impact on public health.”