And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (102 page)

By mid-1987, 185 of his patients had contracted AIDS. William currently was treating 350 patients who were in some stage of HIV-related illness. If someone had told him seven years ago that he would be treating hundreds of terminally ill patients, he would have dismissed them as crazy. Still, the fact that he had adjusted to the work load and preserved his sanity demonstrated how successfully people could acclimate to the crudest realities of the AIDS epidemic. On the practical end, AIDS had become easier to treat as experience made it more predictable and more manageable than in those frightening first years. There was still sadness at the relentlessness of the disease, but today, there also was reason for hope.

This was the assessment of many of the doctors and scientists gathering on the concourse level of the Washington Hilton early that morning for the first day of the AIDS conference. There was sadness and there was hope.

All the old-timers had returned. There was Dr. Alvin Friedman-Kien, the dermatologist who had first realized that a handful of Kaposi’s sarcoma cases was part of a broader epidemic, and Dr. Linda Laubenstein, the researcher who had seen New York’s first two KS cases in 1979, only to be told that she should try to find a French-Canadian airline steward named Gaetan, because he had those funny spots too. Dr. Marcus Conant bustled through the crowd. Dr. Willy Rozenbaum walked toward the opening session with his Parisian colleagues Drs. Jean-Claude Chermann and Francoise Barre. And the veterans of the early CDC work were there too: Dale Lawrence, Bill Darrow, and Harold Jaffe were all still working on various epidemiological projects, and Jim Curran was still the head of CDC AIDS work. AIDS was like middle age, Curran often said now. It wasn’t an experience anyone looked forward too, but there was no way to avoid it either. Dr. Mary Guinan, who had conducted so many of the first interviews with AIDS patients in the frustrating summer of 1981, had advanced to be an assistant CDC director. Still, she had come to the conference that day toting more AIDS research, never convinced that people were taking the epidemic seriously enough.

While the first AIDS conference in 1985 was marked by shock at the dimensions of the unfolding problem and the 1986 conference in Paris was noteworthy for its gloom, this conference seemed cautiously optimistic. By now, the substance of the new science to be presented at the conference was well known. It was a mixture of bad news and good news, and since any news that was not horrible had been so rare for so long in this epidemic, there was at least some relief to be found among the hundreds of studies announced that day.

The most important good news was spelled AZT, the first treatment to interfere with the life cycle of the AIDS virus and extend the lives of patients. It was a primitive drug at best and had many harmful side effects. But it worked. It indicated that more sophisticated treatments could be found as well to lengthen life, even if there was no cure. While doctors currently estimated that an HIV-infected person had a life expectancy of only seven years after infection, five of which were spent incubating the disease, some experts privately predicted that within five years, they would be able to ensure a 20-to-2 5-year longevity after infection.

Though obstacles remained for a vaccine, they no longer seemed as insurmountable as they had two years before. One French researcher had already vaccinated himself with a prototype that was being tested on Zairians. Several other experimental vaccines were in refrigerators, going through the languorous process of FDA approval. Indeed, the problem with getting the federal government to wage an all-out campaign for an AIDS vaccine convinced some scientists that the most formidable barriers were not technological but bureaucratic. In this area too, however, there was reason to hope.

Hope was important now in large part because of the bad news presented at the conference, the news about the virulence of HIV. The ongoing survey of the 6,700 San Francisco gay men who had participated in the hepatitis B vaccine in the late 1970s provided the most stunning bad news of the week. Of 63 men infected with HIV for at least six years, 30 percent had developed AIDS while another 48 percent had ARC. Only 22 percent had no symptoms of disease. Moreover, the numbers of people falling ill seemed to rise dramatically once the subjects were infected with the virus for more than five years. Rather than declining, the proportions of people getting AIDS seemed to be skyrocketing.

The men suffering ARC had no pretty future to look forward to either, according to another study conducted by Dr. Donald Abrams, assistant director of the San Francisco General Hospital AIDS Clinic. Abrams had begun to follow patients with swollen lymph nodes in 1981, optimistically believing that lymphadenopathy would prove to be a protective response to infection with the AIDS virus, one that would keep a patient from getting AIDS. In the first years of his study, Abrams’s hypothesis seemed to bear this out. Now he saw that once their lymph nodes had been swollen for more than three years, they started getting AIDS. In fact, Abrams now figured that half of his patients would have AIDS within five years of the onset of lymphadenopathy, and so far there was no reason to believe this number would not, in time, reach nearly 100 percent.

With the future so clearly laid out, however, the depressing prognosis of HIV-infected people could at least serve the purpose of encouraging more aggressive experimentation with antiviral drugs, since it was clear that hundreds of thousands needed them just in the United States. Already, marketing managers at pharmaceutical corporations were talking eagerly about the “ARC market.”

Of course, these projections weren’t particularly newsworthy to people familiar with the epidemic. The figures reported at the conference in June of 1987 had already been mapped out on that December day in 1983 when Dale Lawrence realized the average incubation period of the disease was five years, the day he clearly saw the marathons of AIDS runners. AIDS was, once again, merely living up to everyone’s worst fears.

The predictability of all that was happening was one of the aspects of the epidemic that continued to fascinate Don Francis. It had brought him moments of bittersweet vindication. New data on transfusion-associated AIDS cases indicated, for example, that far more Americans were destined to die of AIDS-contaminated transfused blood after the federal government and blood banking industry were fully aware of the problem than before. An estimated 12,000 Americans were infected from transfusions largely administered after the CDC had futilely begged the blood industry for action to prevent spread of the disease. “How many people have to die?” Francis had asked the blood bankers in early 1983. The answer was now clear: thousands would.

On the conference program was a seminar offered for blood bankers about how to defend themselves in blood transfusion lawsuits. The seminar speaker was an attorney for San Francisco’s Irwin Memorial Blood Bank, recently the first blood bank to make an out-of-court settlement with the family of a transfusion victim. The Borchelts had been on the way toward probably winning a huge jury award when Irwin decided to settle. In an odd twist, the Borchelt family lawyers had tried to subpoena Don Francis to testify, having heard of his frustration with the blood industry. In the end, the U.S. attorney filed a petition on behalf of the federal government in federal court blocking Francis’s appearance; it simply would have been too embarrassing for the government.

If so much of the past had been painfully predictable to Francis, then so was the future. He had come to Washington as a co-author of a paper that plotted the simple course the epidemic would take in the United States. As Francis had long ago realized, you had only to know the transmission routes of hepatitis B to predict the future of AIDS, and that analysis was what Don Francis would present at this conference.

When the panel moderator introduced Francis to deliver his paper, however, she got his name wrong; she apparently had never heard of him before. And in the audience, two staffers from the gay Howard Brown Memorial Clinic in Chicago shuffled their Italian loafers impatiently while Don talked about his fears that AIDS would become an endemic disease among poor inner city neighborhoods where drug addicts spread the virus to their sexual partners. Finally, one of the bored gay staffers whispered loudly to the other, “Who is this pompous guy, talking on so long?”

A lot of people now central to the battle against AIDS had no idea who Don Francis was. Robert Gallo now said that Don Francis was “irrelevant” to AIDS work.

Few doubted that Francis’s fall from grace stemmed from his conflicts with Gallo during “the war” between French and American researchers. The fact that Francis had proved so troublesome to bureaucrats, always pleading for more money, had not helped him either. Now, the government scientific establishment was lashing back vindictively. No paper that listed Francis as a presenter was accepted for presentation at the AIDS conference this year. Even a paper on vaccine research that he had written with Dr. Jonas Salk was refused. Francis was only able to make this workshop presentation because the woman who was supposed to give the talk couldn’t get to Washington that day.

In his office in Berkeley, Francis had continued to chart AIDS prevention programs for California. He also made regular trips to the University of California campus in Davis, where he was working on an AIDS vaccine with Salk. Yet, he was no longer on the front line, and he was impatient. Before the conference convened, he had been approached by the World Health Organization to consider returning to his old work, fighting disease in Africa. AIDS was spreading rapidly north from the equatorial belt, and someone with Francis’s experience on that continent was badly needed.

Francis considered the proposition. It was what he had wanted to do from the start, hold back this disease. To this day, Francis did not feel he had been beaten by AIDS; he had only been beaten by the system, and because of that the disease had won, gaining its foothold throughout the United States. By the day the conference opened in Washington, he knew that he would return to Africa to fight this pestilence. His first assignment was to be in the Sudan. There, away from the governmental politics of budget and the scientific politics of prestige, he had a chance to make a difference.

T
HAT
A
FTERNOON
1600 P
ENNSYLVANIA
A
VENUE

Large crowds of angry gay people always excited Cleve Jones, and he felt a nostalgic tinge of militant exhilaration as he led the marchers toward the White House, chanting, “History will recall, Reagan did the least of all.”

The film of members of the audience jeering President Reagan at last night’s fundraising dinner had made all the morning newscasts. Today, Cleve heard that a similar chorus of heckles greeted Vice President George Bush when he gave the opening speech at the AIDS conference and defended the president’s newly announced policies for testing. This afternoon, every news organization in the country seemed to have a crew at the White House for the civil disobedience Cleve had spent the past week organizing.

The White House protests had originally been organized by a handful of national gay leaders who wanted to put photographs of themselves being arrested on Pennsylvania Avenue in their next fund-raising brochures. The demonstration, however, came as a wave of frustration was sweeping over the gay community, and organizers from across the country had decided to join the protest. Given his legendary reputation as a media-savvy street activist, Cleve was called in from San Francisco to coordinate the picket line.

As the Washington police prepared to arrest sixty-four gay leaders blockading the White House driveway, they pulled on long rubber gloves. Police had requested full protective suits with face masks, the kind one wears when venturing into a nuclear reactor meltdown, but city officials had persuaded them that rubber gloves would suffice. Cleve watched scores of newspaper reporters and TV cameramen jostling for shots of the protesters and the costumed police, and he marveled at how much things had changed.

He had no doubt that the media’s belated involvement in AIDS was responsible for all the concern the epidemic was generating in every quarter of the nation. Virtually every major newspaper in the country now had a full-time AIDS reporter.
The New York Times
was on the verge of announcing that, at long last, it would allow the adjective “gay” to be used when describing homosexuals. The
Washington Post,
which had done such a singularly deplorable job in covering federal AIDS policy in years past, had dispatched six reporters to cover the opening of the AIDS conference and its attendant protests.

People were paying attention finally, Cleve saw, but that wasn’t all that had changed. The numbers of victims had changed. In San Francisco, tens of thousands, including Cleve, were infected, and more than 3,300 were diagnosed. Even as he plotted his latest militant exploit or planned his 1988 campaign for supervisor, Cleve wondered if he would survive.

Much of what he had once dreamed for would not come to pass; Cleve accepted that now. In years past, Cleve and the other citizens of Castro Street had looked ahead to a time when they had rooted out prejudice against gay people altogether and healed the lives that the prejudice had scarred. They might be old men by then, but they would be able to entertain each other with reminiscences of the old days when they had all believed they could change the world, and know that to a certain extent, they had. Many of those people were dead now, and Cleve accepted that most of his friends would be dead before they reached anything near old age.