And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (95 page)

Although Larry Kramer aspired for precisely such immediate political impact, audiences leaving the play seemed most struck by the broader themes of prejudice that held the play together. As far as Kramer was concerned, AIDS was not the wrath of God but the wrath of heterosexuals. Heterosexuals had decreed that gays could not legally marry or even live together in any semblance of openness without risking ignominy. The gay movement, in Kramer’s view, had colluded with straights by becoming a cause of sexual liberation, rather than human liberation. As Kramer’s alter ego in the play, Ned Weeks, said, “Why didn’t you guys fight for the right to get married instead of the right to legitimize promiscuity?” The play ended with Weeks marrying his lover in a hospital bed, moments before the lover succumbed to AIDS.

As for GMHC, Kramer decried the group as a bunch of “Florence Nightingales” who had turned away from pressuring the government for their share of research funds and services in favor of the melodrama of deathbed scenes. “I thought I was starting a bunch of Ralph Naders or Green Berets,” fumed Weeks in Act II, “and at the first instant they have to take a stand on a political issue and fight, almost in front of my eyes they turn into a bunch of nurse’s aides.”

Insiders gleefully picked out who was who in the cast, since virtually all the play’s characters were based on real people within the GMHC hierarchy. GMHC executive director Rodger McFarlane, Kramer’s own lover, became Tommy, an adorable southern queen confronting the daily dramas of suffering that comprised so much of GMHC work. Stolid GMHC president Paul Popham became Bruce Niles in the drama, worrying about whether the word “gay” should be openly displayed on GMHC party invitations.

Paul Popham had heard enough about the play’s preview performances to decide against attending the show. He had already heard the rhetoric many times over, and he had other things on his mind now.

In March, the doctor had told Paul that the purple spot on his neck was Kaposi’s sarcoma. Paul had taken the news stoically and told only a very few close friends. He had noticed that once people knew you had AIDS, they treated you differently, and he did not want people treating him differently. Friends pleaded with him to take advantage of the support network he had played such a central role in creating at GMHC, but Paul declined. That was for other people, he said, not for him.

Paul Popham had no doubt that he had done the right thing in his stewardship at GMHC, despite all the bad publicity GMHC was getting now. He did not feel he was a murderer for not agreeing with Larry Kramer. Paul had given up four years of his life for the organization and, in the process, lost a lot. He had lost the comfortable confidence he once held in his adopted city, and he felt betrayed by a government for which he had fought and in which he had spent a lifetime believing.

He had gained something, as well, something he never knew had value. Being gay, as such, had never meant much to Paul Popham, and he had never seen the sense of all this gay-movement talk. Now, when he saw a GMHC volunteer returning from the bedside of a dying man, he realized he had gained faith in his embattled gay community. Larry Kramer might call it the work of gray ladies, but Paul viewed the GMHC volunteers as pioneers, imbuing this community with a measure of dignity. The vigils at deathbeds testified to the value of each gay life being snuffed out in this epidemic. The presence of just one witness to the deaths of the lonely sufferers said aloud, “This person was worth something. He was a person.”

Larry Kramer was fond of saying, “There are no heroes in the AIDS epidemic,” but Paul Popham disagreed. There were heroes in the AIDS epidemic, he thought, lots of them.

Within weeks of Paul Popham’s diagnosis, Enno Poersch learned that still another friend from the house on Ocean Walk in the summer of 1980 had AIDS. The late Rick Wellikoff’s lover, Bob, was preparing to leave for Paris to receive HPA-23 treatments when
The Normal Heart
premiered. It was a shattering time for Enno, recalling that first rush of tragedy that had accompanied Nick’s death four years before. Now Rick was dead, and another Ocean Walk roommate, Wes, was dead, and Paul’s boyfriend Jack was dead, and Paul and Bob were dying.

This was the last summer Enno would lease the house on Ocean Walk. There were now several Fire Island homes that had earned the kind of ghostly reputation that had accrued to Enno’s summer home. People walked by these houses, and somebody would point, and then they’d all nod and walk a little faster. Enno’s new lover was so upset by the number of deaths among the house’s former residents that he refused to step inside the building.

It had started five years before, when Nick had come home from work with diarrhea. As far as Enno was concerned, however, it could have been a century ago, so much had happened and so much had changed. With so many of his friends dead from AIDS while he remained as healthy as ever, Enno sometimes felt like he was enjoying a picnic lunch in the eye of a hurricane. The only way out was to become part of the hurricane and perish, and so he stayed in the center, his life wholly encompassed by gales of death.

As New York City belatedly began to grapple with the epidemic, AIDS policy matters were becoming local issues in a number of jurisdictions. In Massachusetts, Democratic Governor Michael Dukakis enraged gay leaders by submitting a $3.3 billion health and human services budget that did not earmark one cent for AIDS. In 1984, when Dukakis had made a similar oversight, the legislature had allocated $1.5 million for education and university research. After substantial pressure, Dukakis added $1.63 million to the 1985-1986 budget.

In New York State, Governor Mario Cuomo, another Democrat with liberal credentials, also was accused of shortchanging AIDS research. For the third year in a row, his budget proposal for state spending was below that suggested by health authorities. When pressed as to why New York State would spend only $3 million for education and direct services, compared with the $9 million being spent in San Francisco, Mel Rosen, the New York AIDS Institute director, adopted the rhetoric of the Reagan administration. “In New York, we don’t believe in throwing money at a problem,” he said. “I don’t know what I’d do with $9 million.” Health workers in poor and minority communities, where the state had yet to spend any money to stem the tide of AIDS among intravenous drug users, quickly informed Rosen of plenty of ways to spend such funds.

The objections that Democratic governors had voiced against state AIDS spending were a comfort to conservative California Governor George Deukmejian. In May 1985, Deukmejian was embroiled in his ritualistic fight with Democratic legislators over AIDS funding. After an exhaustive seven hearings on the next year’s AIDS budget, the legislature approved $21.5 million in AIDS spending. Deukmejian vetoed $11.6 million of it, part of which was restored. When Democrats criticized the governor, Republicans pointed out that California was spending more on AIDS than every other state in the nation combined, and that the western Republican was approving far more AIDS funds than the eastern Democrats. These were difficult arguments to counter.

Public health issues continued to percolate on the local level, giving health officials a taste of what the future would hold. In Oakland, for example, a gay AIDS patient was making repeated visits to a local venereal disease clinic with sundry sexually transmitted diseases. He admitted that he did not warn his contacts of his health problems and ignored advice that he might cut down on unsafe sex. When Dr. Robert Benjamin, the county communicable disease director, gathered gay leaders to discuss the problem, the gay press branded him an anti-gay bigot out to lock up every homosexual in a concentration camp.

Bathhouse owners nervously waited for the onslaught of national closures that was expected after San Francisco banned sexual behavior in bathhouses. The Association of Independent Gay Health Clubs had announced that it had raised $500,000 in pledges to pay legal fees to fight closure. It was more than the group had ever proposed to spend on AIDS prevention, critics noted. Indeed, there was so much nervousness about AIDS education that the Club Bath Association threatened the Key West Club Baths with expulsion if they proceeded with a plan to sponsor a five-part local television program on the syndrome.

In early May, a number of bath owners were considering withdrawing from the Club Bath Association, because of that group’s opposition to any AIDS education in bathhouses. The association’s executive director, however, stood firm. “Where do we draw the line?” he asked in a letter to shareholders. “If a person died in a sauna, would we instruct all our members to remove saunas from all our clubs?” Rather than rush into handing out AIDS brochures, the director suggested that businesses adopt a “wait and see” attitude toward the epidemic.

The first controversy over the wisdom of California’s antibody test law erupted in San Francisco after a gay man, claiming he had AIDS, bit a police officer. The officer wanted the man tested for the AIDS virus, and the district attorney’s office said it might press charges of “assault with the intent to do great bodily harm” if the man was infected.

However, the antibody test law gave all the rights to the man who did the biting. He could not be forced to have the test, a judge ruled, and a doctor would be violating the law if he released antibody test results without the man’s permission. As far as the officer was concerned, however, he was the victim. What about his civil rights?

AIDSpeakers had not anticipated this. They operated on the principle that a person with AIDS could do no wrong. Therefore, the policeman was subjected to the kind of vicious personal attacks meted out to those who dared to think dangerous thoughts. The only thing that saved the policeman from being accused of wanting all gays locked up in concentration camps was the fact that he was openly gay himself, having been the first person to join the local police force by invoking the city’s gay anti-discrimination law.

It was in response to the policeman’s suit, however, that the press liaison for the San Francisco AIDS Foundation fashioned the ultimate expression of AIDSpeak, when she said that the officer was suffering from “AIDSphobia.”

What was AIDSphobia?

“That’s acting like AIDS is the worst thing that could possibly happen to you,” she said.

C
ENTERS FOR
D
ISEASE
C
ONTROL
,
A
TLANTA

AIDS statistics were now tabulated on a Model 277 Display computer in Room 274 of Building 6 at CDC headquarters. Every week, a crew of people, whose job consisted of updating weekly AIDS body counts, categorized the deaths by risk group and geographic region. In the last week of April 1985, exactly four years after drug technician Sandra Ford had written a memo about unusual orders of pentamidine from a New York City gay doctor, the computer said that the number of AIDS cases in the United States had surpassed 10,000.

May 1985

M
AUI
, H
AWAII

If he were fated to die of AIDS, Cleve Jones did not want to undergo the public deterioration that had marked the last months of so many of his other friends. When Cleve left San Francisco, he bought a one-way ticket, thinking he might never return alive. Within a few weeks of his arrival on Maui, however, his health problems cleared. The furrows in his brow smoothed, and he began to think he might stay in Hawaii, not to die, but to enjoy life again.

Cleve spent his days smoking marijuana and wandering through the plush forests; every night he went to Maui’s gay bar, Hamburger Mary’s, and drank vodka martinis until closing time. It was a good life for the first month, but then his conscience started bothering him. One morning, Cleve woke up and announced to himself: “Today, I start taking care of myself. I’m not going to drink. I’m going to get healthy.” That night, however, he found himself back at Hamburger Mary’s drinking vodka martinis. Day after day, he awoke with the same resolution, and every night he was back at Hamburger Mary’s.

The drinking, he knew now, was completely out of control. It had been out of control for years, but he had not admitted it to himself. He had denied his problem, been angry with it, and even bargained with it, assuring himself that he could drink moderately if only he could drink. But Cleve did not control his drinking; the drinking controlled him. His hangovers were worse than ever, and an emptiness seized his spirit. Remorseful mornings followed drunken nights, and still he could not make himself stop.

Who was Cleve Jones? What had become of the idealist who once led demonstrations to protest injustice? That Cleve was gone. There seemed nothing left of him, except the compulsion to drink. It was when this awareness overwhelmed him that Cleve thumbed through the phone book and called the number he knew he had to dial.

That night, Cleve edged nervously into the Wailuku Community Center and slid into a folding metal chair in the back of the room. He listened to a thirteen-year-old boy and an eighty-year-old man talk about their struggles with alcohol; he recognized the common threads that wove their stories into his, and he began to weep.

In the days that followed, Cleve stayed home and read books about alcoholism. He felt fear growing in his stomach, knowing that if he failed to act now, there would be no hope. If he survived the epidemic, he would not survive his addiction to alcohol. He would either learn to live with the truth or be prepared to die with the lie.

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.”

L
UXEMBOURG
G
ARDENS
, P
ARIS

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 were 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.”