And the Band Played On

  Each day of work resulted in a new level of despair for Don Abrams, Paul Volberding, and the other staffers at the AIDS Clinic. Volberding prided himself in patient involvement. He came to know the lover, helped bridge any problems with the family, and then watched the patient make that last, desperate gasp for breath before dying. As the number of new cases mounted in San Francisco, and scores of worried men in the early stages of AIDS infection filled the waiting room of the AIDS Clinic, Volberding considered the national funding problems surrounding AIDS research.

  Like most AIDS clinicians, Paul Volberding had been forced into the unfamiliar realm of politics to scare up more money and attention for the epidemic. In the board of directors meetings at the National KS/AIDS Foundation, Volberding often was the only heterosexual in the room. He had always seen the gay community as a monolithic bloc and was surprised at its various factions and political divisions. Rather than unite them, AIDS divided them further.

  Still, among AIDS patients, Volberding saw the truth of what he long had believed: The viruses that bring disease also bring out the best in people. This certainly was true with AIDS. Dramas of courage and reconciliation played daily in the clinic rooms and hospital deathbeds. On the streets, there was talk of lovers abandoning their AIDS-stricken partners, but the most commonly enacted stories were of unparalleled fidelity. Some families abandoned their “leper” children, but most often mothers and fathers, sisters and brothers, crowded around the sick men’s beds, often returning to offer a last measure of devotion after years of estrangement. For many families, news of a Kaposi’s sarcoma or Pneumocystis diagnosis rendered a dual diagnosis, informing the parent both of the child’s disease and sexual orientation. Still, it mattered little, Volberding saw. Reconciliation was a far more common scenario for AIDS patients and their families than abandonment.

  There was also the bravery of these men facing an early death. Routinely, they allowed Volberding or the other AIDS Clinic doctors to poke, prod, and puncture them in a vain attempt to find something that might offer a clue to the disease’s cause. Although it was clear that any medical discoveries would come too late to help these patients, few failed to voice the hope that maybe that last blood sample, painfully drawn from a near-collapsed vein, would save others from suffering. Maybe it would save others from dying.

  On July 26, the day the Medical Special Care Unit for AIDS opened in Ward 5B, all but two of its dozen beds were filled. Within days, however, an AIDS patient occupied every bed in the ward, and there would be no vacancies from then on.

  After he saw the death notice of someone with whom he had gone to bed a couple of years back, Gary Walsh had stopped scanning the obituaries in the Bay Area Reporter for signs of the person who might have infected him. Lesions were coating Gary’s stomach, making it difficult for him to eat. He had occasional dizzy spells, and his doctors were testing him for cryptococcus. Walking was painful because of severe athlete’s foot that had appeared from nowhere one day. God only knew why his joints ached so much. But he still thought he might make it. The press was full of talk about promising breakthroughs. Maybe he still had a future.

  In the meantime, everybody in the gay community was at everybody else’s throat. Gary’s friend Joe Brewer had written a series of articles in the Bay Area Reporter, urging gay men to modify their sexual life-styles. For this, Joe was denounced as a “sexual fascist.” Gary had developed his own plan for AIDS prevention in San Francisco. “They should put one of us at the end of every gay bar in town,” he told Lu Chaikin. “Then they would know what AIDS is really all about.”

  The University of California AIDS researchers had broken ranks with the university to get funds directly from the legislature. By late July, it was clear they were going to pay for that aggressive move.

  The state government of California moved with amazing speed to fund the AIDS research grants assembled by Marc Conant in April. Without any serious opposition, the legislature passed the $2.9 million; by late July, the governor had approved the funds. Although the legislature cannot allocate funds for specific university projects, Assembly Speaker Willie Brown’s staff thought they had an agreement with university officials that the funds would be released immediately for AIDS doctors. Unfortunately, the appearance of a windfall in research money stirred a hornet’s nest of jealousy among other researchers. Suddenly, doctors who had demonstrated no interest in the epidemic before began calling UC administrators with ideas for AIDS research, and university officials announced they would not release any funds directly to AIDS researchers. Instead, doctors would submit grant proposals, which would undergo the same languorous reviews that any funding applications faced in the UC system. With the sluggishness that characterized the academic response to the epidemic, funding requests were shifted from committee to committee within the university system. Finally, the university announced a deadline for applicants in October and slated the first meeting of the university review committee for October 15. With luck, the university could start releasing funds in December.

  Marc Conant couldn’t believe it. The reason the funds had been sought in the first place was because of similar delays at the National Institutes of Health. The university made some deference to AIDS doctors’ pressure by releasing $819,000 in small grants to researchers. These grants were so small that some researchers refused them, saying the amounts were not enough even to buy equipment, much less begin any serious research. The university also set aside $740,000 for clinical research centers to be headed by Paul Volberding in San Francisco and Michael Gottlieb in Los Angeles. But most of the money that had been assigned for scientific, nonclinical research was untouchable.

  Word quickly spread through the UC system that administrators were exacting academic retribution on researchers who had dared defy university hierarchy to get funding directly from the legislature. As pressure mounted on university officials, however, they only dug in their heels. It soon became clear that doctors who complained about delays also would pay.

  Larry Kramer had been in Europe for a month. In late July, in Munich, Germany, he was killing time; he had no idea what to do with himself. It was three years since that summer on Fire Island when he had talked to Enno Poersch about the mysterious disease haunting Enno’s lover Nick. It was barely two years since he had held the first AIDS fund-raiser in his apartment and organized the Gay Men’s Health Crisis. Christ, it seemed like a lifetime ago, he thought. It was his life Before.

  In Munich, Larry saw a sign that said “Dachau.” He took the subway to a streetcar, which took him to a bus that made its way through the suburbs to the famous death camp.

  “Dachau was opened in 1933,” Larry read in the museum.

  He stood there stunned. He had had no idea the camp had opened so early, just months after Adolf Hitler assumed power in Germany. World War II started for the United States in 1941, Larry thought.

  “Where the fuck was everybody for eight years?” he wanted to shout. “They were killing Jews, Catholics, and gays for eight years and nobody did a thing.”

  In an instant, his fury turned to ice. He knew exactly how the Nazis could kill for eight years without anyone doing anything. Nobody cared. That was what was happening with AIDS. People were dying, and nobody cared.

  As the anger rose again in Larry, he knew what he would do. That night, he jumped a plane to Boston. He quickly made his way to Cape Cod and spent his first night in the States at the Hyannisport Holiday Inn. Within a few days, everything fell into place. He found a cottage on the water and sat down to write a play that would force people to care.

  35

  POLITICS

  Monday, August 1, 1983

  ROOM 2154, RAYBURN HOUSE OFFICE BUILDING, WASHINGTON, D.C.

  The problems that had dogged Representative Ted Weiss’s attempts to get investigators into the Centers for Disease Control were resolved quickly on the eve of his oversight subcommittee’s hearings on AIDS. Clearly, the administration did not want the story of obstruction
and delays to get a messy public airing on Capitol Hill. Still, the administration’s stall had been successful in impeding the House of Representatives, dominated by Democrats, from ascertaining the real needs of agencies in time for a concerted AIDS budget plan for fiscal year 1984, which would begin in just eight weeks. The president’s budget called for a $300,000 cut in AIDS funding at the Centers for Disease Control for the next year. Total federal spending for AIDS was slated to increase only about 20 percent, from $14.5 million to $17.6 million. There still were no federally funded AIDS-prevention campaigns, and there was nothing resembling a coordinated plan of attack on the disease. The first day of hearing testimony, largely from scientists working on AIDS, became a litany of what was not being done.

  “The failure to respond to this epidemic now borders on a national scandal,” said Dr. Marcus Conant, who led scientific testimony. “Congress, and indeed the American people, have been misled about the response. We have been led to believe that the response has been timely and that the response has been appropriate, and I would suggest to you that that is not correct.”

  Conant recited the “unconscionable” funding delays at the National Institutes of Health, maintaining that the institutional sloth “has resulted in loss of lives.” He called for a blue-ribbon commission to establish AIDS priorities and set funding parameters independent of the heavy hand of the Office of Management and Budget. “We are in the beginning, not the midst—we are in the beginning of a national and indeed worldwide epidemic that is going to threaten the lives of hundreds of thousands of individuals,” Conant concluded. “It would seem clear that the mandate of this government is to respond and to respond immediately.”

  Dr. Mathilde Krim from Sloan-Kettering in New York suggested a federal program of $200 million and also called for a special AIDS commission, noting that no coordinated plan for AIDS epidemiology, treatment, or basic research yet existed. She also wondered aloud at the federal government’s claim that it was spending $25 million directly on AIDS research. “These figures of $25 million spent in 1983 puzzle me,” she said, politely. “I don’t see any evidence for them among my colleagues. I know of a few hundred thousand dollars that have been spent.” Other witnesses suggested that the National Academy of Sciences be enlisted to conduct an independent study of funding needs, even though that august body, like most scientific groups, had shown little interest in the epidemic.

  Stan Matek, immediate past president of the American Public Health Association, said that the Reagan administration’s policy on AIDS was to order health officials, “Don’t ask for any money. Make us look as good as you can with what you’ve got.”

  Dr. Mervyn Silverman, San Francisco Public Health director, noted that $100 million was being spent nationally just in the hospital bills of AIDS patients already. He made a pitch for a government AIDS education program and cited the 300-year-old advice from Thomas Adams: “Prevention is so much better than healing because it saves the labor of being sick.”

  Throughout the day, the increasingly partisan lines on which AIDS funding would be debated became clear. Republican representatives, apparently briefed by the administration, chided witnesses for wanting to “throw money” at the AIDS problem. “We should be careful to avoid the inevitable push for more money as if dollars are a magic potion,” said Representative Robert Walker, a Republican from Pennsylvania.

  It was the people with AIDS who lent the first day of hearings the most poignant and sometimes humorous moments. This was appropriate, given the fact that although they were only bit players in this political drama, they were the least devoted to any script. They played their roles for their lives’ sakes. AIDS sufferer Anthony Ferrara of Washington, D.C., described the depression that followed his Kaposi’s sarcoma diagnosis in March with the comment: “I came home that night and my significant other held me in his arms, and I said to him, ‘Why do I feel like AH MacGraw?’” Pneumocystis victim Roger Lyon from San Francisco pleaded, “I came here today with the hope that this administration would do everything possible, make every resource available—there is no reason this disease cannot be conquered. We do not need infighting. This is not a political issue. This is a health issue. This is not a gay issue. This is a human issue. And I do not intend to be defeated by it. I came here today in the hope that my epitaph would not read that I died of red tape.”

  The next day, Dr. Edward Brandt told the subcommittee that the administration had provided the NIH and CDC with all the AIDS funds they could use.

  “I am not sure, quite frankly, what further activities we could undertake at the present time in a reasonably meaningful way,” said Brandt, who, in truth, had made a list of precisely such further activities only a few days before in his unanswered request for $35 million. Brandt explained that the administration was spending $166 million on studies “relevant to this particular problem.”

  The Weiss hearings also gave the blood industry the opportunity to again enact its ritual of denial on the problem of AIDS in the blood supply. At the hearings, Dr. Joseph Bove, chair of both the transfusion advisory committee to the FDA and the similar committee for the American Association of Blood Banks, blamed the concern about transfusion AIDS on an “overreacting press.”

  “Even if—and it is still a big if—a small number of AIDS cases turn out to be transfusion related, I do not believe that this can be interpreted to mean that our blood supply is contaminated,” said Bove. Saying that 10 million people had been transfused with blood since 1980, Bove maintained, “If—and there is no evidence yet that this is so—but if all twenty cases under investigation by CDC finally turn out to be transfusion related, the incidence will be less than one in a million.” Bove brought charts and tables that purported to show that the average American had twice the chance of dying in a flood than of transfusion AIDS. A typical Californian was twice as likely to die in an earthquake, he said, as from transfusion AIDS. A hernia operation or appendectomy, he claimed, offered twenty times the chances of death.

  August 3

  IRWIN MEMORIAL BLOOD BANK, SAN FRANCISCO

  The day after Dr. Joseph Bove’s graphic example of the odds against transfusion AIDS, a male blood donor walked into the Irwin Memorial Blood Bank. The nurse didn’t pay much attention to his deferral card and didn’t notice that he never answered the question about whether he had had hepatitis. The man did say he was not a member of a high-risk group for AIDS. His pint of blood was properly refrigerated with other units of blood, awaiting the calls from hospitals.

  The Next Day

  DUBLIN STREET, SAN FRANCISCO

  Frances Borchelt and Bob, her husband of forty-one years, had talked for days before they went to see the doctor about the possibility of an operation. The doctor took X-rays and noted that Frances Borchelt’s right hip was degenerating. The hip replacement operation would probably ease the grandmother’s chronic pain, the doctor agreed. Frances and Bob decided they needed a few days to think it over. Four days later, the elderly couple returned to the doctor’s office resolved. Frances wanted the operation. When Frances made up her mind to do something, she moved. One of her sons was to be married in October. Frances wanted to be fit enough to dance at his wedding reception. The doctor scheduled the surgery for a week later.

  During all the explanations and consultation, nobody ever mentioned anything about a blood transfusion.

  August 13

  CASTRO STREET

  Gary Walsh had been too sick to celebrate his thirty-ninth birthday a few days before, so Matt Krieger was overjoyed when Gary felt well enough again to enjoy a night out on Castro Street. A week before, a huge feature article on Gary had appeared in the San Francisco Chronicle with pictures of Gary at home, Gary at the doctor’s office, and Gary with Matt.

  As one of the first AIDS patients to go public, Gary Walsh had opened his life like a book for interviews and televised guest shots. But reporters’ questions about how many sexual contacts he’d had in his lifetime, and the gay community’s
maudlin fawning over AIDS patients rankled him.

  Gary told Matt that somebody he didn’t know had shouted “I love you” from a car on Castro Street earlier in the day. “If one more person says they love me, I’ll punch them in the mouth,” he said.

  The previous day, Gary’s doctor had found eight new lesions. Life wasn’t proceeding like a Marcus Welby episode, as far as Gary was concerned. He spent his days getting stuck with needles. Then, he’d have to wait five days to see if the needles had ferreted out some deadly new disease that he had never heard of.

  Matt admired Gary’s courage through all this. After he dropped Gary off at home, Matt called his sister Susan. He hadn’t planned on talking about Gary or AIDS, but his sister asked about vacation plans, and Matt mentioned he and Gary were planning to go to Hawaii for Christmas. He worried whether Gary would make it because of his health.

  “What’s wrong with his health?” she asked.

  Matt had told both his mother and another sister that Gary had AIDS. Apparently, nobody had bothered to tell Susan. He trembled with anger as he recounted Gary’s travails.