And the Band Played On

  TIJUANA, MEXICO

  The holistic healers had promised that the amino acid and DMSO treatments would cure Gary Walsh. They had cured AIDS patients before, they assured him. Moreover, the medical establishment knew the treatments were effective; that was the very reason they were illegal in the United States, they said. Doctors would go out of business if they let people get about the business of really curing disease.

  The reasoning appealed to Gary’s iconoclasm. In the days before leaving for San Diego, his hope burned fiercely.

  He didn’t have a deadly disease, he told himself. That was a lot of bunk, he thought as he walked into the clinic for the first of his ten days of treatment.

  Almost immediately, Gary felt better. The holistic practitioners told him that with the help of the amino acid injections, his healthy cells would consume his Kaposi’s sarcoma lesions. Sure enough, by the end of the regimen, it looked to Gary as though the lesions were getting smaller. Thank God, he thought. I’m going to live.

  February 25

  SAN FRANCISCO

  Marc Conant was not surprised at the letter he received from Gary Walsh in the morning mail; he’d seen this all before.

  “My KS lesions are going away,” Gary wrote. “I’m feeling much better. The healthy cells are dissolving the cancer cells.”

  Gary wrote that he might not need to see Conant again if the trend continued. He expected to recover.

  Gary Walsh was not Conant’s first patient to go traipsing off to Mexico for a miracle cure. The amino acid clinics were making a killing from desperate AIDS victims seeking a reprieve from their death sentences. The fact that you had to leave the country for treatments rejected by the medical establishment only made them seem all the more tantalizing. Patients recently diagnosed with a fatal illness tended not to be wild about anything that smacked of official medicine.

  Conant’s own psychologist, Paul Dague, had tried the amino acid route, going to the same clinic that was made famous by its promotion of laetrile for cancer patients. It was Paul who suggested the amino acid treatments to Gary. Other patients returned from healers, usually in Mexico, and chatted excitedly about how their lesions were disappearing even while Conant could measure a substantial growth in the tumors. It was all part of the process of accepting a terminal illness, Conant knew. First, denial.

  For Paul Dague, one of the early well-known community organizers to contract AIDS, the search for a cure took one final bitter turn when, in the last days of his life, he flew to the Philippines for “psychic surgery.” Marc Conant visited Paul days before his departure. Although near death, Paul was sitting in a chair when he greeted Conant. He was forced to sit, Conant knew, because a Kaposi’s sarcoma lesion the size of a ping-pong ball was dangling on the inside of his throat. If Paul lay down, the lesion would fall into his windpipe, choking him. Conant thought it was particularly cruel that God would not even let the man lie down to die, that he would spend his final months always sitting.

  Paul hesitated briefly after he told Conant about his travel plans for the Philippines, as though he were waiting for Conant’s blanket condemnation of such alternative therapies. Conant instead wished Paul the best of luck.

  “I’m not going there for a cure,” Paul said. “I’m going for a miracle.”

  25

  ANGER

  March 3, 1983

  DEPARTMENT OF HEALTH AND HUMAN SERVICES, WASHINGTON, D.C.

  Throughout February, pressure had continued to mount on the federal government to move to protect the blood supply. The nine-month stall on a national blood policy, dating back to the discovery of the hemophiliac cases, could not be sustained. Sensitive to the demands of hemophiliacs, virtually all the private pharmaceutical companies had fallen in line with the National Hemophilia Foundation’s guidelines restricting donations from gay men and other high-risk groups. The federal government, meanwhile, had to steer its policy through turf wars between the Centers for Disease Control and the Food and Drug Administration, as well as the pressures exerted by blood bankers, easily agitated gay groups, and congressional representatives promoting their various interests.

  The Centers for Disease Control took the hard line in their proposed guidelines, calling for both blood testing and mandatory exclusion of all people in high-risk groups, not merely the voluntary self-deferral the blood banks wanted. Taking its cues from the blood industry, the Food and Drug Administration favored more moderate restrictions. The blood bankers were worried that they would not have enough blood and would suffer economically if all gays were restricted; they also fretted about accusations that they would look like anti-gay bigots if all homosexuals were summarily rejected.

  The government’s final recommendation was as broad a compromise as could be worked out. It was issued as the policy of the U.S. Public Health Service, the umbrella agency for the CDC, NIH, and FDA. “As a temporary measure, members of increased risk for AIDS should refrain from donating plasma and/or blood,” the guidelines said. High-risk people, however, did not include all gays, according to these guidelines, but merely those who were sexually active, had overt symptoms of immune deficiency, or had engaged in sexual relations with people who did. There would not be the hepatitis antibody blood screening that the CDC wanted. Instead, the guidelines called for studies to evaluate screening procedures. With the weight of the Public Health Service behind them, the American Red Cross, the American Association of Blood Banks, and the Council of Community Blood Centers had no choice but to announce that they would comply.

  The Public Health Service guidelines came seven months after the CDC first had proposed policy for the AIDS blood problem in July 1982, and two months after “that horrible meeting” in Atlanta. Between that January 4 meeting and the March 4 publication of the guidelines in the MMWR, nearly one million transfusions were administered in the United States.

  The Public Health Service pronouncements on AIDS also included the first risk-reduction guidelines ever issued by the federal government. The PHS saw fit to offer only two sentences of guidance to gay men eager to avoid the strange new disease, despite reams of data collected in the still-unpublished case-control study. “Sexual contact should be avoided with persons known or suspected to have AIDS,” the PHS wrote. “Members of high-risk groups should be aware that multiple sexual partners increase the probability of developing AIDS.”

  That statement represented the sum total of the U.S. government’s attempt to prevent the spread of acquired immune deficiency syndrome among gay men in March 1983, more than twenty months into the epidemic.

  CASTRO STREET, SAN FRANCISCO

  Gary Walsh picked through his pasta salad at the Village Deli on Castro Street, looking out the broad plate-glass windows at a passing parade of men, all buttoned up in thick wool jackets. Joe Brewer could see that the disease had skimmed the extra fat from Gary’s body. Where he was once cheeky, his face now displayed prominent cheekbones. Although Gary’s eyes occasionally flashed their old merriment, they were deeper set now, in gaunt sockets, making them look larger and more open.

  Gary speared a spinach pasta curl on his fork and watched it slip around as he finally said what he wanted to say:

  “What do you think of suicide with extreme illness?”

  “I think it’s wrong,” said Joe, surprising himself at how automatic his answer was. “It’s a disrespect of the life force to end it. That’s playing God, to end it before it ends itself.”

  “I don’t know,” Gary said, unconvinced.

  After the meal, the pair made their way to Gary’s apartment on Alpine Terrace. Joe studied the cityscape that spread below the bay windows while Gary made coffee in the kitchen. Joe, of course, knew how bitterly disappointed Gary had been with the amino acid therapy. Gary had felt better for a week but, within days, the fatigue and aches had returned, and he had angrily canceled a check for $1,000 that was to be his final payment for the treatment. He hadn’t wanted to see any of his friends for days after that. He had moved fr
om denial into depression, Joe thought. Gary would be better off once he got to anger.

  Gary sat down on the couch and continued his thought. He had spent most of his life in pain, from the time he was hit by a car when he was seven years old. Finally, just a few years ago, he had found relief with corrective back surgery, but recovery from the surgery had required him to be bedridden for three months, again in chronic pain.

  “I know all too much about pain,” Gary said, “and I might not want to follow this all the way to the end.”

  Joe recalled those agonizing days after Gary’s back surgery and understood his point. Besides, it was Gary’s decision to make.

  “All right,” Joe answered, reluctantly. “I’ll do whatever it takes to help you.”

  March 7

  NEW YORK CITY

  “If this article doesn’t scare the shit out of you we’re in real trouble. If this article doesn’t rouse you to anger, fury, rage and action, gay men may have no future on this earth. Our continued existence depends on just how angry you can get…. Unless we fight for our lives we shall die. In all the history of homosexuality we have never been so close to death and extinction before. Many of us are dying or dead already.”

  With those words, Larry Kramer threw a hand grenade into the foxhole of denial where most gay men in the United States had been sitting out the epidemic. The cover story of the New York Native, headlined “1,112 and Counting,” was Kramer’s end run around all the gay leaders and GMHC organizers worried about not panicking the homosexuals and not inciting homophobia. As far as Kramer was concerned, gay men needed a little panic and a lot of anger.

  Kramer built his story around the burgeoning statistics, the fears of doctors who were at a loss as to how to handle the new caseloads, and the first rumors of suicides among gay men who preferred to die rather than face the brutal, disfiguring disease. He lashed out at the delays in grant funding by the National Institutes of Health and chided the CDC for falling behind on gathering epidemiological data. “There have been so many AIDS victims that the CDC is no longer able to get to them fast enough. It has given up,” Kramer wrote. “This is a woeful waste with as terrifying implications for us as the alarming rise in case numbers and doctors finally admitting they don’t know what’s going on. As each man dies, as one or both sets of men who had interacted with each other come down with AIDS, yet more information that might reveal patterns of transmissibility is not being monitored and collected and studied…. How is AIDS being transmitted? Through which bodily fluids, by which sexual behaviors, in what social environments? For months the CDC has been asked to begin such preparations for continued surveillance. The CDC is stretched to its limits and is dreadfully underfunded for what it’s being asked, in all areas, to do.”

  On the local level, Larry Kramer attacked The New York Times for its scant AIDS coverage and the “appalling” job of health education conducted by city Health Commissioner David Sencer. Kramer’s sharpest barbs were directed at Mayor Ed Koch, “who appears to have chosen, for whatever reason, not to allow himself to be perceived by the non-gay world as visibly helping us in this emergency. Repeated requests to meet with him have been denied us. Repeated attempts to have him make a very necessary public announcement about this crisis and public health emergency have been refused by his staff…. With his silence on AIDS, the mayor of New York is helping to kill us.”

  The gay community received no better marks. Kramer said that the New York gay doctors, as a group, have “done nothing. You can count on one hand the number of our doctors who have really worked for us.” And he noted that the only national gay newsmagazine, the Advocate, “has yet to quite acknowledge that there’s anything going on.”

  “I am sick of guys who moan that giving up careless sex until this thing blows over is worse than death,” Kramer wrote. “How can they value life so little and cocks and asses so much?”

  At the end of the story, Larry Kramer listed friends who had died, people like Nick, Rick Wellikoff, Jack Nau, Michael Maletta, and the two men he had seen that first day in Alvin Friedman-Kien’s office, David Jackson and Donald Krintzman. Kramer knew twenty-one people who had died—“and one more, who will be dead by the time these words appear in print. If we don’t act immediately, then we face our approaching doom.”

  Larry Kramer’s piece irrevocably altered the context in which AIDS was discussed in the gay community and, hence, in the nation. Inarguably one of the most influential works of advocacy journalism of the decade, “1,112 and Counting…” swiftly crystallized the epidemic into a political movement for the gay community at the same time it set off a maelstrom of controversy that polarized gay leaders. Endless letters poured into the Native, denouncing Kramer as an “alarmist” who was rabidly “sex-negative” and was using AIDS to deliver his post-Faggots “I told you so.” Even as the issue sold out on Manhattan newsstands, Kramer laid plans for wider publication of the piece around the country, where it would prove to have a far greater impact on AIDS policy, particularly in San Francisco.

  The New York AIDS Network timed the release of its own demands for city services to Mayor Koch to coincide with Kramer’s piece. “It must be stated at the outset that the gay community is growing increasingly aroused and concerned and angry,” its statement said. “Should our avenues to the Mayor of our City, and the Members of the Board of Estimate not be available, it is our feeling that the level of frustration is such that it will manifest itself in a manner heretofore not associated with this community and the gay population at large.”

  To drive home the point, the Native printed a request for 3,000 volunteers to be instructed in civil disobedience such as sit-ins and traffic tie-ups to force city officials to confront AIDS concerns.

  Two days later, on March 9, Mayor Ed Koch and Health Commissioner David Sencer hurriedly announced the formation of an Office of Gay and Lesbian Health Concerns under Director Dr. Roger Enlow, an architect of the low-profile handling of AIDS in the gay community. Dr. Enlow, gay leaders knew, would not rock any boats.

  On the same day, in a simple but tasteful ceremony in Washington, a new secretary for the U.S. Department of Health and Human Services was sworn in. Like her predecessor, Richard Schweiker, Secretary Margaret Heckler came to her job with moderate-to-liberal political credentials after serving for eight terms as one of the only Republican congressional representatives from Massachusetts. Just four months before, she had lost her bid for reelection to Boston State Representative Barney Frank in a campaign that, in the desperate end, featured a whispering campaign by Heckler supporters that Frank was gay. Pundits, however, said Heckler’s appointment was an attempt by the Reagan administration to polish its image in the social policy area after two years of brutal budget cuts in spending for the poor.

  Over at the Rayburn House Office Building, Congressman Henry Waxman noted, with some concern, that the president had managed to appoint a person who, in all her years in Congress, never seemed to have much interest in issues related either to health or human services. Moreover, Heckler was not known as an intellectual giant or as a person of sufficient will to stand up to an administration dedicated to dissecting the very programs she was sworn to administer.

  On the day that Secretary Heckler was administered her oath of office, the Centers for Disease Control released new figures showing that AIDS had stricken 1,145 Americans, killing 428. One in five of the diagnosed cases in the United States had been reported since January.

  March 12

  VANCOUVER, BRITISH COLUMBIA

  Everybody who came to the AIDS forum had vague concerns about this new disease that people in the United States were talking so much about; that’s why they had come. Nobody expected much of this gorgeous hunk in a plaid shirt, faded jeans, work boots, and a beautiful mustache—a definite “10,” they agreed. Yet he was billed as leader of the Gay Men’s Health Crisis in New York City. And few were unmoved when he talked about his friends who had died, and about how death was spreading in New York
and San Francisco, Toronto and Los Angeles, and that it would come here too.

  Paul Popham had accepted the invitation for the organizational forum of AIDS Vancouver because of the chance it would give him to visit the Northwest and see his family in Oregon. After his talk, he was startled when a familiar figure walked up to the audience microphone for the question-and-answer session.

  “People say you can spread this through sex,” said Gaetan Dugas. “Are there any studies that actually prove this can be passed? How can people say this can be passed along when they don’t even know what causes it?”

  Paul Popham had never seen the normally affable Gaetan Dugas so angry. He let the doctors field most of the questions. It wasn’t clear from the bickering, however, who knew more about AIDS, the doctors or Gaetan. Gaetan had spent the past two years reading positively everything he could grasp on the strange disease with which he had been diagnosed for three years. He hadn’t read anything that gave him hard, solid facts to support the idea he couldn’t have sex, Gaetan said.

  Of course, other comments from the floor were also challenging Paul Popham and the doctors on the podium. Leftist gay radicals insisted that all this attention to the U.S. disease would foster homophobia. Gay bathhouse owners were angry at the local gay newspaper for running a health page; this obsession with a handful of sick people in the United States was bad for business. Yet it was the contentious Quebecois, standing there in his black leather outfit, who captured the attention of forum organizer Bob Tivey. There was something else about him, something familiar. Toward the end of the evening Tivey realized that he knew Gaetan from at least ten years before, in the hot discos of Toronto. Gaetan was older now, but he was the same man. It must have been 1971 or 1972, and Gaetan was always the hottest party guy in Ontario, Tivey remembered, very fashionable and always charming. He was the man, it had seemed then, that everyone was looking for in those long nights at the gay bars.