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

The day after Don Francis got his phone call from Paris, Dr. Edward Brandt, who, as Assistant Secretary for Health, was the top-ranking health official in the federal government, dashed off a memo to the directors of the National Cancer Institute, the National Institute for Allergy and Infectious Diseases, and the National Institute on Drug Abuse. The Centers for Disease Control was short of funds for its research into KS and opportunistic infections. Could these better-funded agencies pick up some of the work?

The letter was in the form of a request, not an order. In the following weeks, it was simply ignored by the various chiefs of the National Institutes of Health in their comfortable offices in the rolling greens of Bethesda.

Meanwhile, across the country, researchers waited for word on the research money the National Cancer Institute had promised at the September meeting. But it clearly was not forthcoming. The institute hadn’t even issued the standard request for proposals (RFP) that call for applications for federal grants. Without an RFP, the NCI could not even begin to accept applications for the funds, much less review proposals and conduct the lengthy on-site visits required for doling out money.

Nobody at the National Cancer Institute seemed to be in much of a hurry. The new syndrome clearly was a very low priority, even as it was becoming clear to more and more people that it threatened calamity.

January 12

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In the meeting at Larry Kramer’s apartment, everybody agreed that Paul Popham would be the ideal president of the new organization, Gay Men’s Health Crisis, which was geared to raising money for gay cancer research. Some of the more salient reasons were left unspoken. Paul personified the successful Fire Island A-list gays who had never become involved in Manhattan’s scruffy gay political scene. He’d help make working on this disease fashionable and something with more status than your typical gay crusade. He was also gorgeous, which would probably help attract volunteers. Unspoken too was the view that Larry Kramer’s confrontational style would make him an unsuitable president of the group, even though he had taken a leading role in its organization. His very name was anathema among the crowd they needed to reach if they were to raise substantial funds. Larry had a half-crush on Paul anyway, so he joined the unanimous vote for Paul. After Paul’s election, the board of directors of the new Gay Men’s Health Crisis was selected, and it included Larry Kramer and Paul’s longtime friend and Fire Island housemate, Enno Poersch.

The group had persuaded the Paradise Garage, one of the less popular discos, to hold an April benefit. That, they figured, would give them a chance to raise enough money for research and then they could fold up and get back to their lives. Privately, Paul had made it clear that he did not want his role in the organization to become public knowledge. Nobody at work knew he was gay, he said, and he wanted it to stay that way. Larry bit his tongue. He didn’t want to be a scold about this, but Larry privately thought it boded poorly to have a president of the Gay Men’s Health Crisis who did not want to say he was a gay man.

January 14

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Marc Conant told Cleve Jones that he needed advice from somebody political. They’d talk about it over dinner, but first there was someone Conant wanted Cleve to meet.

Simon Guzman smiled shyly at Cleve Jones when the young activist entered the room on the top floor of the UC Medical Center. As they talked, Simon pulled out a snapshot of himself from Before. Smooth brown skin was pulled taut over well-developed muscles. Clad only in a tight pair of yellow Speedos, Simon was everything that Cleve had considered hot; he knew he could have fallen for the hunky Mexican in the photo.

Simon Guzman’s body now, however, was barely more than a skeleton with sallow, lesion-covered skin sagging loosely, and tubes coursing in every conceivable orifice and vein. Simon explained that he hadn’t made many friends in his two years working as a printer in the suburb of Hayward. Yes, he had been popular but that kind of, uh, popularity didn’t put one in line for best buddies, not in this time and place. Now he had this horrible diarrhea that wouldn’t stop; the doctors couldn’t even tell him what was causing it. He was embarrassed that his mother would learn he was gay because he had gay cancer, and sometimes he felt so alone he wished he would just die. It would be over then.

Cleve left the room feeling sick to his stomach. He wanted a drink.

This was real; this was the future.

Over dinner, Conant began carefully laying out what he saw ahead. He had been thinking about this since he left the National Cancer Institute meeting in September. The forty-four-year-old dermatologist leaned back in his chair. His face showed a certain weariness, but his voice never quavered. He was going through his lecture with a slow, smooth southern cadence that subtly revealed his roots in Jacksonville, Florida. Years of giving lectures as a clinical professor at UCSF had also taught him how to meter his sentences and pause to let a significant piece of information sink in.

This is an infectious disease, Conant began. The CDC case-control study may offer some definitive word on how it was spread, but that research was stalled, probably for lack of resources. We are losing time, and time is the enemy in any epidemic.
The disease is moving even if the government isn’t.

It was at this dinner that Cleve Jones first heard the technical jargon that would become the stuff of his nightmares in the years ahead—terms like geometric progression and exponential increases. Some scientist had come up with a new name for the syndrome: Gay-Related Immune Deficiency, or GRID. Conant, however, wasn’t sure how gay-related this immune deficiency would stay. Viruses tended not to respect such artificial divisions among humans. Lymphocytes were lymphocytes, and clearly they were major taste treats for the new virus, whether they happened to live in gay bodies or straight.

“This is going to be a world-class disaster,” Conant said. “And nobody’s paying attention.”

Cleve’s thoughts had drifted off while he merged Conant’s frightening tale of a new virus with what he knew about gay community sexual mores; hell, with what he knew about his own sexual exploits. His face turned white, and he ordered a drink.

“We’re all dead,” Cleve said.

Conant let the comment pass. Of course, he had harbored just such suspicions, but the gay community didn’t have time to dawdle in despair. He had a plan and he needed Cleve’s help.

They needed some kind of foundation, like the American Cancer Society or something, that could get warnings out to gay men and pressure the government for more research funds. In New York, gay men were trying to pay for research themselves, Conant noted. That was stupid because no private fund-raising could ever begin to hold a candle to what the government could pour into research with the stroke of a pen. But the Washington money wasn’t coming. It was just business as usual there even while the number of cases escalated.

This shows us that for the short term, we can’t rely on Washington to save our lives, Conant said. Until the government gets going, it’s going to be up to this community to save itself.

“This is the big one,” he sighed. “There isn’t going to be anything bigger than this.”

Still, Conant told how little cooperation he had found in the gay community. He already had called the local gay churches for help in distributing brochures. They weren’t interested, saying it might panic their parishioners. Gay business groups weren’t interested in financing efforts that many considered alarmist. Selma Dritz, of course, was getting word out that an extremely serious health threat was coalescing, but Dritz had spent so many years warning gay men about this or that peril that it was easy to overlook her talk about GRID.

Cleve knew just where the conversation was heading, so Conant wasted no time in guiding him there. Cleve was probably the only gay leader who could claim his own personal constituency without having a title in any club or group. He was a minister without portfolio. The guys on Castro Street trusted him. Cleve also knew how to work the political system for money and favors, two things gays would be needing lots of when this GRID epidemic took off. Cleve took a last sip on his vodka tonic and sensed vaguely that he was making a commitment that would take more from him than a few nights of meetings. Then he recalled the shriveling Simon Guzman and the photograph of the man in the yellow Speedos. He stared into the melting ice and twisted lime at the bottom of his glass and said softly, “Count me in.”

Marc Conant persuaded his lawyer to start writing the necessary incorporation papers for a nonprofit group called the Kaposi’s Sarcoma Education and Research Foundation while Cleve Jones touched bases with political leaders. Cleve expected an enthusiastic burst of support from Pat Norman, who, as the director of the Office of Lesbian and Gay Health in the health department, was the titular leader for all things health-related among homosexuals in San Francisco. Instead, she fidgeted nervously during their meeting. We don’t want to panic people, she said. She outlined the potential problems: Not only could gays be panicked but this could be manipulated to fuel an anti-gay backlash. She would see to it that appropriate information got out appropriately once she consulted various gay community leaders and arrived at a consensus agreement that what they said was…appropriate. For the first six months of the epidemic, Cleve knew, this meant saying almost nothing at all.

Cleve understood the dual concerns of reassuring the homosexuals while not inflaming anti-gay prejudice. Given what he knew about this epidemic, however, this twenty-six-year-old street organizer thought a little panic might be appropriate for gay men. It seemed appropriate because very few were paying even the slightest attention to the small dribble of news coverage leaking out about gay cancer and gay pneumonia.

Cleve had dinner with the KS patient he had met in December, Bobbi Campbell, the registered nurse. Bobbi and Jim Geary, a volunteer grief counselor with a Berkeley death-and-dying group called the Shanti Project, had started a rap group of KS patients, held every Wednesday night in various patients’ homes. The seven-year-old Shanti Project based its approach on the works of the death guru, Elisabeth Kübler-Ross, and had been drifting without much direction in recent years. The weekly support group and Conant’s KS clinic, however, were about the only services available to those stricken with the terrifyingly novel diseases. It was clear to Bobbi Campbell that as the numbers of ailing grew, many more services would be necessary, including home-health care, hospices, and massive education for the gay community.

“Nobody’s doing anything,” Bobbi told Cleve. “We’ve got to get people organized.”

Cleve’s time soon became split between his new work on Kaposi’s sarcoma and his continuing lobbying for passage of a statewide gay rights bill sponsored by his boss, Assemblyman Art Agnos. On free weekends, he cuddled with his old boyfriend, Felix Velarde-Munoz, or with Frank, his Long Beach affair. Frank sometimes had to cancel their occasional dates, complaining of fatigue. Felix was distracted when Cleve started talking about gay cancer and seemed out of sorts lately. None of this made sense until much later; in the opening months of 1982, it was just background noise in Cleve’s life, like the drone of city trolleys that you heard but never listened to.