And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (41 page)

We’ve finally got things moving, thought Bill Kraus as he typed Phil Burton’s press release on the AIDS bills.

The three-day NYU conference on AIDS offered the embattled blood industry a chance to draw its battle lines against further government demands for blood testing. Dr. Joseph Bove had by now become the leading spokesman for the blood industry, given his roles as chair of the FDA blood advisory panel, chief of the blood bank at Yale-New Haven Hospital, and chair of the American Association of Blood Banks Committee on Transfusion-Transmitted Disease. With the Public Health Service blood guidelines less than two weeks old, Bove worried aloud that the “CDC—now more aggressive and independent”—would want even more action from blood banks in its compulsion to “do something.” Bove mocked the CDC’s evidence of blood transmission, insisting the action could not be warranted until the CDC showed definitively that an infectious agent caused AIDS. “The evidence for nearly all this is inferential,” said Bove, a professor of laboratory medicine at Yale. “I wish it were better.”

Moreover, in only one transfusion AIDS case could the CDC pair a transfusion recipient with a donor who actually had AIDS. In the other six cases under investigation, the donors were in high-risk groups showing early AIDS symptoms, but none had one of the diseases the CDC required to substantiate a case of full-blown AIDS. The report of the San Francisco baby appeared in the
MMWR,
Dr. Bove added, not a standard peer-reviewed medical journal. Bove chose not to dwell much on the fact that such peer-reviewed publication takes six to nine months. “Nothing exists in the peer-reviewed medical literature—not one case!” said Bove. “…Evidence for such [blood] transmission is lacking.”

Years later, when it was clear that hundreds were dying because the blood industry and federal regulators at the FDA heeded the calls of people like Joseph Bove, the doctor would pull a copy of his speech from his shelf at Yale to show that his 1983 presentation at NYU was, technically, accurate. “I wrote ‘evidence is minimal,’ “said Bove. “I was extremely cautious about my choice of words. I didn’t want to go on the record either way. I was smart enough not to say it wasn’t there. Technically, I was not inaccurate.”

On the day the NYU conference opened, the San Francisco gay newspaper,
Bay Area Reporter,
published Larry Kramer’s broadside of anger and outrage. The issue also included an editorial that contained some startling confessions from editor Paul Lorch. “This space—for that matter, the entire paper by editorial fiat—has been sparse in its coverage of what has come to be known as AIDS,” Lorch wrote. “The position we have taken is to portray that each man owns his own body and the future he plots for it. And he retains ownership of the way he wants to die…. [Now] we have made a very deliberate decision to up the noise level on AIDS and the fatal furies that follow in its wake.”

C
ASTRO
S
TREET
, S
AN
F
RANCISCO

Gary Walsh and Joe Brewer were enthralled by the Larry Kramer story. Gary couldn’t stop reciting the litany of complaints Larry raised. There wasn’t enough government funding. The newspapers weren’t paying attention. Nobody cared; there was no outrage.

Joe was pleased to see Gary get worked up about AIDS; he hadn’t seen Gary’s famous temper since his diagnosis.

“We’ve got to do something—something dramatic,” Gary said.

Candles, Gary thought suddenly. The candlelight march.

It was the perfect idea. The candlelight march from Castro Street to City Hall in 1978 on the night of the assassinations of Supervisor Harvey Milk and Mayor George Moscone had been one of the most dramatic moments of their lives. Gary had even left the march to call his parents and dramatically announce he was gay, prompting his mother to worry openly that Gary would not go to heaven.

A stream of candles glimmering down Market Street, Gary thought. It would be such a gentle, nonthreatening battle line. The demands could be made, not in an ugly confrontational way, but in a way that invited the best in people. Besides, the media could not avoid taking long, lingering shots of homosexuals holding candles. It would be a smash.

Gary got on the horn to other people with AIDS. It was going to be
their
march, they decided, articulating their needs as the people most intimately struggling with the horrors of the new disease. There was no more talk of suicide as Gary busied himself with his new project and started boning up on AIDS facts for the media appearances and political lobbying he planned.

Joe Brewer began putting together notes for a series of articles he wanted to put in the local gay newspapers to give gay men the psychological tools to start changing their sex lives. His denial about AIDS had been shattered too late, only when Gary was diagnosed. He could date his practice of strictly no-risk sexuality only to his Christmas trip to Key West. All the AIDS groups, like the Shanti Project, the KS Foundation, and especially the San Francisco Department of Public Health, were obsessed with keeping gay men from panicking. From his own experience, and from conversations with clients, Joe figured gay men could use a little panic now if they were going to change their sex lives and survive.

V
ANCOUVER
, B
RITISH
C
OLUMBIA

When Gaetan Dugas’s best friend moved from Toronto back to Vancouver, he felt like he had landed in the middle of Peyton Place. Everybody was talking about Gaetan as “the Orange County connection,” going out to the bars and having sex with people. It hadn’t helped when Gaetan made a scene at the AIDS Vancouver forum, arguing about whether AIDS actually could be spread through sex. Gaetan’s sexual prowling had reached near-legendary proportions since then. He made little effort to conceal his medical problems, casually rolling up his sleeves as he quaffed beers at pubs, despite the lesions on his forearms.

According to one story, one tryst of Gaetan’s was so furious when he heard that Gaetan had AIDS that he tracked the former airline steward down to confront him. By the time they were done talking, Gaetan had charmed the man back into bed.

The friend from Toronto sat Gaetan down for a talk. They had known each other for years, since they were Air Canada stewards together in Halifax and had escaped to San Francisco for the Gay Freedom Day parades and parties. He genuinely loved Gaetan, knowing him as a kind and caring friend, not just somebody to party with. If a friend were sick, Gaetan could be relentless in his attentions, and there never seemed to be an end to the little considerate gestures Gaetan doled out to the people close to his heart. Still, the friend suspected that the rumors might be true. Asking Gaetan to give up sex, he knew, would be like asking Bruce Springsteen to give up the guitar. Sex wasn’t just sex to Gaetan; sex was who Gaetan was—it was the basis of his identity.

Gaetan at first denied he was having sex with anyone. His friend didn’t let it end at that. He suggested to Gaetan that anyone with AIDS should stop having sex. Period.

“They can’t tell me that having sex is going to transmit it,” said Gaetan. “They haven’t proved it yet.”

“Yes,” his friend countered, “but if there’s even the slightest possibility, then you shouldn’t do it.”

“Yes, I suppose you’re right,” Gaetan shrugged.

The friend wasn’t sure that Gaetan agreed at all. He recalled the conversations they had had years before in Halifax, deciding whether they could hit the bars on the nights after they had shots for gonorrhea. The doctors always said to wait a few days, but Gaetan figured that since somebody gave it to him, he could give it right back.

“This is incurable,” Gaetan’s friend pushed. “You don’t just get a shot. It would be so incredibly unfair to give it to someone.”

Yes, Gaetan said, so unfair.

March 20, 1983

79 U
RANUS
S
TREET
,
S
AN
F
RANCISCO

Rain beat against the redwood deck outside the sliding glass doors; winter was leaving northern California reluctantly that year. The core of gay political activists who had been closest to Harvey Milk sat around the kitchen table, a copy of “1,112 and Counting” lying nearby in case anybody hadn’t read its call to action. Among others were Bill Kraus, Cleve Jones, and Dick Pabich, the aide who had rushed into Harvey Milk’s tiny office on the dark November day five years before to discover the group’s political mentor lying facedown in a pool of blood.

Dana Van Gorder, aide to Supervisor Harry Britt, laid out the problem on the city level. The Department of Public Health still had not produced one piece of informational literature on AIDS. Endless committee meetings were being held to determine the politically correct way to say what had to be said. The simplest suggestions, like Dana Van Gorder’s old proposal for bus signs on the city-owned transit system, also were bogged down in process. There was no sense of emergency at the health department.

There was also the question of the study. As early as October, epidemiologists from the University of California in San Francisco, working in conjunction with San Francisco General Hospital, had been talking about data that compared the incidence of diagnosed AIDS cases with census tracts counting unmarried males. By the end of December, 1 in 333 single men over age fifteen in the Castro neighborhood already was diagnosed with AIDS. Factoring out heterosexual single men and the delay in reporting diagnoses, this meant that perhaps 1 in 100 gay men in this area already had AIDS. A person having twenty sexual contacts a year had 1 chance in 10 of making it with an AIDS sufferer. The odds shot up astronomically when larger numbers of infected but asymptomatic gay men were included.

The researchers, Drs. Andrew Moss and Michael Gorman, had given their incidence study to the Bay Area Physicians for Human Rights and other gay political leaders in January, figuring they would release the statistics and sound alarms to gay men. However, these gay doctors and activists, assuming they knew what was best for the city’s homosexuals, had done nothing. Instead, they were pondering how to deliver the information…. appropriately. They feared that the study results would have a devastating impact on the Castro neighborhood and prove a major public relations nightmare, and they managed to intimidate the researchers with that argument. The epidemiologists, fearing they would lose the community cooperation that was the key to their studies, agreed to hold off releasing their results until the study was published in April in the form of a letter to the British medical journal
Lancet.

Public Health Director Dr. Mervyn Silverman had done nothing to disseminate the study’s findings in the weeks since his meeting with Supervisor Harry Britt, who informed him of the study. Rather, Silverman seemed content to simply lay the responsibility for education on gays themselves. It was the liberal thing to do. It was politically savvy as well, because no gay leaders would be offended this way. Bill Kraus noted that this also was the cheapest course for the health department, requiring no commitment of departmental staff time or educational resources.

“Okay, we have to do an end run around these people,” Bill said to the group gathered at 79 Uranus Street. “We’ll just do it like a political campaign. We’ll get the message out about safe sex, and repeat it and repeat it until it sinks in. Targeted mailings. Brochures that speak to the audience. We’ve done it all before.”

Also, the study needed to be emancipated from the gay-leader types, Bill decided. Fuck process. When people see how serious this is, they’ll change. Who did these leaders think they were, deciding the life and death of the community?

Over the next two hours, the group mapped out an educational plan. Since the health department wouldn’t send out brochures, Bill Kraus would get Phil Burton and Barbara Boxer, who also was aligned with the Milk Club, to send out their own brochures using their congressional franking privileges. The mailings could be directed to the computerized mailing lists of single, male voters in heavily gay precincts. The Harvey Milk Club, meanwhile, could do another brochure that was much more explicit than anything congressional representatives could issue. Gay men needed simple direct messages about what to do, and not do, for the community to survive.

After these tasks were assigned, Bill pulled Cleve aside into a guest bedroom. He had this spot on his leg, he said, pulling up the cuff on his pants. Cleve examined the discoloration and pronounced it a garden-variety liver spot.

“That’s what happens to you older men,” he joked.

Bill looked only mildly relieved. Cleve wondered to himself if they all were going to spend the rest of their days like this. His lymph nodes had been slightly swollen for months, and he had taken to examining every visible square inch of his body during his morning showers. Half his friends were doing the same thing; the other half were going to the baths as they always had.

March 22

901 M
ISSION
S
TREET,
S
AN
F
RANCISCO

The
San Francisco Chronicle
is housed in a building with a tower and a big clock at Fifth and Mission streets. Not far from the financial district, the neighborhood had become a refuge of winos and derelicts who petitioned passing reporters to spare change. Having run that gauntlet, on this morning, a young reporter approached an assistant city editor with the copy of a study leaked to him by a “congressional source.” The bold “CONFIDENTIAL” stamp piqued the editor’s curiosity, as did the reporter’s confirmation from an official “high in the health department” that the study was accurate. It wasn’t Merv Silverman, of course, and a feminine pronoun strategically slipped out along the way, leading the editor to accurately assume that the high official was the no-nonsense Selma Dritz who, in news circles, was considered only slightly less credible than God. Reporters don’t have to tell editors their sources, but it doesn’t hurt to hint during lobbying for a story. The
Chronicle
was running more AIDS stories than any newspaper in the United States. This, however, wasn’t saying very much. AIDS stories still needed a careful marshaling of editorial support to clear the various hurdles toward publication.

“It’s definitely a story,” the editor agreed, casting a calculative eye toward the news editors to whom he needed to sell the piece. “Let’s go.”

“We don’t want the data released,” said Dr. Michael Gorman, the study’s co-author, when contacted about the study. “You have no right to release it. It’s marked confidential.”

At the SF Department of Public Health, Pat Norman was upset when she was told the
Chronicle
was going to publish the study. “I’ve only known about it for two weeks,” she said abruptly. She was on the verge of announcing her candidacy for the board of supervisors, and it wouldn’t pay to look like part of a coverup. She obviously was unaware that the reporter had seen the letter, dated two weeks before, in which Dr. Andrew Moss alluded that Pat Norman was already opposed to the data’s release.

It wasn’t her job to release medical studies, Norman reasoned. It was the job of the director of the Bureau of Communicable Disease Control, and he hadn’t let the information out either. “There was never a question of whether we were going to release this information,” she said. “We wanted to release it in a reasonable way. Appropriately, so as not to cause panic.”

Back in the newsroom, the reporter had written two paragraphs of his story when the phone rang. It was Randy Stallings, who was president of the Alice B. Toklas Memorial Democratic Club and co-chair, with Pat Norman, of the Coalition for Human Rights, the umbrella group of all the city’s gay organizations.

“I’d never ask a reporter not to do a story,” he said, adding that there were many reasons not to publish the information. Instead, he said, it should come out in an…appropriate way.

“They’ll put barbed wire up around the Castro,” said Stallings. “It will create panic. People won’t go to gay businesses in the Castro. It will be used to defeat the gay rights bill in Sacramento.”

After the reporter had written three more paragraphs, Dr. Moss called from London, pleading that the study not be printed. He clearly was worried that gays would not cooperate with future studies if their leaders denounced his research.

“This already has gone out to the appropriate channels,” said Moss, referring to gay leaders and the Bay Area Physicians for Human Rights. The reporter needed to give “very serious thought” to whether to write the story.

Two paragraphs later, Selma Dritz called the reporter, chuckling over an appearance that Pat Norman had made in her office. Stop the
Chronicle
from running the story, Norman had requested. “I don’t know what she’s worried about,” said Dritz. “It’s true.” Dritz then went on the record confirming the study’s accuracy.

N
EWARK
, C
ALIFORNIA

Rick Walsh always remembered his Uncle Gary as a wonderful storyteller. In the basement of the Walsh home in Sioux City, Gary would talk on and on, making up his stories as he went along. Ever since then, Gary had been Rick’s favorite uncle. He was never condescending to Rick and had always treated him as an equal. During the four years that Gary didn’t talk to his parents because of Grandma Walsh’s unfortunate comment about going to heaven, Rick was the conduit for family news. Rick and Gary had remained close, even after Rick married and settled into a quiet cul de sac in suburban Newark, California.

On that March evening, Rick was happy to hear Gary’s voice, although he could tell his uncle wasn’t going to share jokes.

“Have you heard about AIDS?” Gary asked.

“I think so,” said Rick, not liking the drift of the conversation.

“I’ve got it,” said Gary. “I could die in two years or less. Nobody has ever been cured.”

“Awesome,” said Rick.

Rick couldn’t believe Uncle Gary would have something so serious. He didn’t know what to say. After a long pause, he blurted out the first thing that came to his mind.

“I don’t know what to say except that I love you.”

Gary’s parents in Sioux City were another matter.

“That’s what you get from all that,” his mom said, not bringing herself to utter the words she meant. “Why don’t you leave that city?”

Gary hung up shortly after she suggested he go to confession.

March 25

F
EDERAL
B
UILDING,
S
AN
F
RANCISCO

Making a difference was the raison d’être of Bill Kraus’s politics and his life. His arm-twisting with the Social Security Administration was yielding results, and Bill looked forward to the call he was about to make to the sister of an AIDS patient. She had called months before, telling Bill about the Social Security case workers who had denied her brother disability payments. Yes, he had
Pneumocystis carinii
pneumonia, but he looked well enough to work. He did not fit the Social Security requirements for disability, they said. He had appealed his case but lost.

Bill Kraus had been calling bureaucrats for months on the case. Again, he felt fortunate to be working for Phil Burton, who signed any letter Bill put in front of him when it concerned AIDS. In Congress, Bill knew, Burton was the only representative who didn’t blanch at the gay jokes that inevitably came up during any cajoling on the epidemic. He had become the leader on the issue, and at Bill’s request, fired off letters to top Social Security administrators to make an AIDS diagnosis presumptive evidence of disability. The bureaucrats were not so recalcitrant as they were slow.

Concentrating on the specific case
of
the ailing San Francisco man, Bill first secured cooperation from a local official who then referred the matter for approval in Sacramento. Now, months later, the man finally was qualified for disability.

The sister’s voice was hollow when Bill called with the good news.

“Thanks,” she said, “but my brother died last night.”

Eventually, Bill’s lobbying secured a national directive declaring AIDS a presumptive disability. Even years later, however, Bill could not manage to tell the story about the man and his sister without crying. It seemed to sum up so much of 1983.

March 31

P
ACIFIC
H
EIGHTS,
S
AN
F
RANCISCO

“All of you represent different constituencies in the gay community,” said Marcus Conant, scanning the huge room where an anybody-who’s-anybody inventory of the city’s gay politicians were seated. “Things have to change and change fast, or you won’t have any constituents left.”

The politicos shifted uncomfortably in their chairs. By and large, they were unaccustomed to this kind of talk. They were much more familiar with discussions about discrimination and liberation, co-sexuality and heterosexist oppression. Now there were new, disconcerting terms like cytomegalovirus, clusters, incubation periods, the hepatitis B model, and of course, geometric progression. When dealing with AIDS at all, most gay political leaders preferred framing the epidemic in familiar concepts. This is why condemning the federal government had become so popular. One could use the conventional rhetoric, including discrimination and prejudice. Now, however, doctors were tossing the ball squarely into the gay leaders’ court, and most of the activists weren’t sure what they should do, or more accurately, what was the politically correct thing to do.