And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (40 page)

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

V
ANCOUVER
, B
RITISH
C
OLUMBIA

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.

Bob Tivey reintroduced himself to Gaetan at the end of the forum while taking the names of people who might provide or need social support services. Gaetan confided that he had been one of the first people in North America to be diagnosed with Kaposi’s sarcoma. Yes, he’d like support services, Gaetan said, but no, he did not have AIDS. He had skin cancer. Gaetan started getting angry again, talking about the doctors who said he shouldn’t be having sex. Who ever heard of cancer being infectious? Tivey detected that Gaetan was almost a textbook case of denial and anger, and he figured it would be easy to provide counseling for him.

Meanwhile, a gay newspaper in Edmonton had already written a story about an airline steward with AIDS who was popping into Alberta and screwing people in the bathhouses—but Bob Tivey hadn’t heard those stories. Not yet.

Paul Popham couldn’t believe how well Gaetan looked, considering how long it was since he had been diagnosed. Gaetan confided that he had suffered a bout of
Pneumocystis
that winter and had gone back to Quebec City for care. All his West Coast friends had thought they’d never see him again, but now he felt great. His hair was growing back now that he was off chemotherapy. Paul told Gaetan about the wonderful circus GMHC planned as a fund-raiser at Madison Square Garden the next month. He also mentioned that Jack Nau had died about a year and a half before.

Not far below the surface of the conversation, Gaetan’s anger continued to simmer. Suddenly, he blurted, “Why did this happen to me?”

In March 1983, the first case of AIDS was diagnosed in Australia—an American visitor. Australian public health officials now waited for their first homegrown cases, aware that tens of thousands of men from Down Under had taken advantage of the cheap “Skytrain” flights to San Francisco in the early 1980s. In France, AIDS researcher Jacques Leibowitch began calling AIDS “the charter disease,” because so many of the early European gay cases were among the men who had boarded the inexpensive charter flights to New York and San Francisco.

March 17

N
EW
Y
ORK
U
NIVERSITY,
M
ANHATTAN

Marc Conant picked up a copy of the
Native
with “1,112 and Counting from a newsstand and showed it to Paul Volberding while the two San Francisco doctors shared a private moment at a New York University AIDS conference. They were standing on a campus patio; Conant could see the scores of other doctors milling about inside, sharing their latest insights on whether this or that form of chemotherapy worked best on Kaposi’s sarcoma.

“Kramer’s right,” said Conant. “Here we are working on people who are already sick, people for whom it’s already too late. We need to be out there screaming to gay people that, if they don’t stop, we’re all going to die.” The pair decided to call a meeting of gay community leaders when they returned to San Francisco. It was time to sound major alarms.

Paul Volberding was grateful he didn’t have to contend with the politicalization of AIDS medicine in San Francisco. In New York the gay doctors seemed to make everything into a political issue. At one session of the conference, Volberding had noted that San Francisco General Hospital planned to open a ward for AIDS patients in the summer. The rationale for the AIDS ward was the same as for the city’s AIDS clinic. Presenting such a complicated array of disorders, the syndrome demanded that new specialists be created, people who understood the nuances of treatment for a
Pneumocystis
patient who might simultaneously be suffering from ulcerating herpes in the rectum and KS lesions coating the stomach. Dealing just with the medicines and symptoms generated some of the most intricate clinical problems in the history of medicine, drawing on virtually every medical specialty. At San Francisco General, they were literally writing the textbooks on AIDS care because of their clinic. It made medical sense to have such a ward, Volberding said, both for the patients and for the doctors who wanted to find a way out of the AIDS nightmare.

Paul Volberding was astonished at the vehemence with which Dr. Roger Enlow, the new coordinator of New York City’s Office of Gay and Lesbian Health Concerns, denounced the plans for the AIDS ward. It would be nothing more than a leper colony, he said. Dr. Enlow vociferously argued that AIDS patients should not be treated separately; it was everything they were trying to avoid in New York.

That afternoon, Congressman Phillip Burton introduced a resolution in Congress asking for an additional $10 million in funding for the Centers for Disease Control for AIDS research. Congresswoman Barbara Boxer, the other representative from San Francisco, introduced a parallel bill to allocate $20 million to the National Institutes of Health for AIDS studies. The money bills were calculated and written by the Capitol’s three most prominent, openly gay aides, Bill Kraus, Tim Westmoreland, and Michael Housh from Boxer’s office. The Reagan administration, of course, was still solemnly insisting it did not need more money for AIDS research. Scientists had all the funds they needed, they claimed. For the three gay aides, however, the bills were just the opening salvo in the funding wars. Westmoreland already was planning a Health Subcommittee hearing on AIDS for May, while Manhattan’s Representative Ted Weiss, who chaired an oversight committee on government operations, was considering a full-scale hearing to delve into the government’s entire response to the epidemic.