And the Band Played On

by Randy Shilts

  And, of course, the appearance of Chermann and Montagnier at the conference was also an attempt to bridge the simmering rivalry between the Pasteur Institute and the National Cancer Institute. Dr. Gallo’s abrupt cancelation infuriated Krim, who opened the conference with the observation, “This rivalry stands in the way of truth and understanding.”

  Given her years of efforts in trying to interest New York City government in planning for the epidemic, Krim also wanted a public airing of local health policy issues in a two-person panel featuring New York City Health Commissioner David Sencer and Dr. Mervyn Silverman, who just three weeks before had left his post as San Francisco public health director. With the bathhouse issue resolved, Silverman was increasingly considered something of a sainted figure by AIDS clinicians across the country, particularly in New York. After all, Silverman had actually spent money on AIDS facilities and education programs. His past sins of indecision seemed almost trivial next to Sencer, who was asked to explain why it was good public policy not to spend a dime on AIDS education, patient services, or coordination of treatment facilities. In case the more obvious irony of the Silverman-Sencer pairing was not detected, Larry Kramer was on hand to shout a not-so-dispassionate commentary on Sencer’s performance from the back of the room. Silverman was embarrassed for Sencer and uncomfortable himself, feeling he had been an unwitting part of a plan to set up the New York health commissioner. However, the time for Sencer’s embarrassment, it turned out, was just beginning.

  PUBLIC THEATER, MANHATTAN

  Dr. Emma Brookner looked up from her wheelchair. Her voice wavered between weariness and despair, like the voices of many doctors who had spent years tending AIDS patients in this city without a heart.

  “Before a vaccine can be discovered, almost every gay man will be exposed,” she said. “Ned, your organization is worthless. I went up and down Christopher Street last night, and all I saw was guys going into bars alone and coming out with somebody. And outside the baths, all I saw was lines of guys going in. Why aren’t you telling them bluntly? ‘Stop!’ Every day you don’t tell them, more people infect each other.”

  Ned Weeks understood the frustration.

  “Don’t lecture me,” he said. “I’m on your side. Remember?”

  “Don’t be on my side,” Brookner shot back. “I don’t need you on my side. Make your side shape up. I’ve seen 238 cases—me, one doctor. You make it sound like it’s nothing worse going around than the measles.”

  “They wouldn’t print what I wrote,” Ned confessed. “Again.”

  Suddenly, all action stopped and the cast went on a break, and Larry Kramer stared at the empty stage. At times, rehearsals of The Normal Heart took on a surreal quality for Kramer. This was his life. He, of course, was Ned Weeks, the protagonist who storms and shouts his way through the first years of the epidemic in New York City. Dr. Emma Brookner, battling both an unresponsive federal government and a lethargic city health establishment, was based on the wheelchair-bound pioneer of AIDS work in New York, Dr. Linda Laubenstein. The play faithfully recalled every obstacle Kramer had faced in his years of AIDS activism, drawing a particularly detailed portrait of the foibles and failings of Gay Men’s Health Crisis and its leaders.

  Kramer hoped desperately that he might accomplish as a playwright what he had failed to do as an activist—to move New York and its gay community into action against AIDS. The play delivered a devastating indictment of official indifference at City Hall. Mayor Koch’s supporters spread word that Joseph Papp was only producing the show to even an old score he held against the mayor. Kramer suspected that the Koch administration might well respond to this latest onslaught the way it had answered every criticism of its AIDS policy in past years, by ignoring it or stonewalling. He also knew that, at last, events were conspiring to force the city to take up arms against the disease.

  The changing face of the AIDS epidemic in the city heralded serious consequences if AIDS prevention programs continued to be deferred. More than anywhere else in the country, AIDS in New York City was no longer just a gay problem. The proportion of cases among heterosexual intravenous drug users had increased by one-third in just one year. With the epidemic entrenched in the underclass, the new AIDS stats for January 1985 revealed that for the first time, a majority—54 percent—of New York City’s AIDS cases were nonwhite.

  The proliferation of AIDS among drug addicts bred a host of related social problems, because drug users were the major vector through which the epidemic could spread into the heterosexual population. Most of the city’s AIDS babies were born to drug-using parents, and virtually all the cases of heterosexual transmission were among the female sexual partners of minority drug users. Already, AIDS clinicians working with drug addicts worried that the disease would become endemic to the East Coast poor. Dr. Arye Rubinstein was afraid that the virus would spread from addicts into high schools, where it could proliferate among sexually active teens. He called for aggressive AIDS education in schools, a proposal for which he was dismissed as an “alarmist.”

  Concern about how the city would logistically handle the mounting AIDS caseload had finally gone beyond AIDS clinicians and into city government. In late January, a seven-member delegation of city health officials traveled to California to investigate San Francisco’s network of AIDS patient services and community programs. Like an unofficial fact-finding delegation that Dr. Krim had headed late the year before, the city delegation returned to New York proposing AIDS education and treatment programs based on the San Francisco model. Their fifty-nine-page report, which had been forwarded to Commissioner Sencer, stated bluntly that New York “must” start long-range and short-term planning, warning that AIDS “has the very real potential to be crippling to the city’s hospital system.”

  Meanwhile, the city’s bathhouse policy also came under greater scrutiny. The Village Voice, which had only recently discovered the epidemic, engendered the bathhouse controversy by doing something that no gay newspaper had dared to do—it printed arguments on both sides of the issue. In a long letter published in the Voice, Michael Callen, a man with AIDS who served on the New York State AIDS Advisory Council, recounted how gay political leaders had subverted his attempts to discuss bathhouse closure at the state council. It didn’t help matters much when Sencer based his arguments against closure on a study done by a city epidemiologist, Alan Krystal, that said that closing the bathhouses would only reduce the spread of AIDS by one-quarter of one percent. The organization that had financed part of Krystal’s research, it turned out, was the Northern California Bathhouse Owners Association.

  To his friends, David Sencer was a man whose career seemed cursed by bad timing and a penchant for bumbling. As a former director of the Centers for Disease Control, he had presided over an internal investigation of the infamous Tuskegee experimentation in which a group of poor Southern blacks with syphilis were left untreated so doctors could study the long-term effects of the disease. Even as disclosure of the study threatened a scandal, Sencer opposed ending it. Sencer later presided over the swine flu epidemic and had personally persuaded then President Gerald Ford to launch the ambitious swine flu vaccination campaign. Unfortunately, the flu epidemic never happened and more people died from the vaccinations than the disease itself. For his aggressiveness, Sencer lost his job.

  Sencer came to New York City as health commissioner in early 1982, when a handful of AIDS cases heralded the start of a new epidemic. Almost from the start, Mayor Koch had put city AIDS policy under Sencer’s sole authority. As late as February 1985, Koch still refused to answer reporters’ questions about the handling of AIDS in New York, referring all queries to Sencer. For his part, the commissioner demonstrated throughout the epidemic that he was not about to repeat the mistake that had cost him his job at the CDC. Rather than err on the side of action, Sencer had spent the epidemic erring on the side of inaction, comforting himself with the notion that at least he was not feeding panic. For years, this posture had largely spar
ed Sencer the wrath of the gay community, Larry Kramer notwithstanding, since local gays were more concerned with the politics of AIDS than its medicine. And Sencer rarely fell prey to a critical press because mainstream newspapers weren’t writing much about AIDS anyway.

  Conditions, however, were deteriorating for Sencer in the early months of 1985. In January, he faced tough questioning at a city council hearing called by council members who were worried that the issue might come up in elections. When pressed to state what the city was spending on AIDS, Sencer said it was “about $1 million a year.” He could not say where the money was being spent, however, and maintained that it would be impossible to make that determination.

  Sencer’s subsequent appearance on a panel with Dr. Silverman also proved a major embarrassment. Within a few days, Sencer’s public relations aide was telling reporters that they could not interview Sencer if they were going to try to draw direct comparisons between San Francisco and New York.

  On the morning of February 12, Commissioner Sencer agreed to meet with a reporter from the San Francisco Chronicle to discuss the public health response of New York City to the AIDS epidemic. On the way into the commissioner’s office, the reporter passed Drs. Mathilde Krim, Michael Lange, and Joyce Wallace. In the previous days, the three had talked at length to the reporter about the nightmare unfolding in New York because of the city’s slothful response to AIDS. As they left the office, they whispered to the reporter that they had spent the past hour trying to persuade Sencer to do something, without any success. Once in Sencer’s office, the reporter laid out the criticisms leveled at the city in words that hardly varied from what Sencer had just heard moments before.

  “I’m not aware of these problems,” Sencer said flatly. “Nobody has ever brought these matters to my attention.”

  As for AIDS education, Sencer maintained that the city had done enough. “The people of New York City who need to know already know all they need to know about AIDS,” he said.

  Sencer dismissed suggestions that AIDS was a “crisis” in the city. Everything was under control, he said.

  In that week of February 1985, while the official position of New York City was that the AIDS epidemic was not yet a crisis, the number of the city’s AIDS cases surpassed 3,000.

  A week later, the first series of newspaper articles investigating New York’s response to the AIDS epidemic were published, not in New York, but in the San Francisco Chronicle.

  By now, AIDS education had emerged as a volatile issue in all the cities hard hit by the epidemic. Although the conservative Los Angeles County Board of Supervisors had still not allocated any funds for AIDS education, state grants had financed an ambitious “L.A. Cares” advertising campaign for AIDS information. Billboards, posters, and gay newspaper advertisements showed a short mother in an apron shaking a wooden spoon at a hunky young son and giving such admonishments as “Play safely” and “don’t forget your rubbers.”

  By definition, however, such AIDS prevention campaigns frankly discussed a subject about which the mainstream society was skittish—sex. The AIDS Project-Los Angeles spent months in meetings with the Rapid Transit District before they got approval to put the signs on buses. Only one television station would air the APLA public service announcement on AIDS. All other television stations in the Los Angeles area refused, citing considerations of taste. It became something of a joke in AIDS circles that the epidemic would mark the first time that homosexuals died from lack of good taste.

  When the San Diego AIDS Project started its “Ban-AIDS” campaign, it found opposition from an even more unusual corner. Johnson & Johnson used a “cease and desist order” to halt the campaign, claiming the “Ban-AIDS” slogan was an infringement on their trademark “Band-Aids.”

  February 21

  RAYBURN HOUSE OFFICE BUILDING, WASHINGTON, D.C.

  AIDS was becoming a big enough story that the television cameras arrived at 9:45 sharp for the start of an unusual joint congressional hearing of the two House subcommittees chaired by Henry Waxman and Ted Weiss. Centers for Disease Control Director James Mason, who had served as Acting Assistant Secretary for Health since Edward Brandt’s resignation, sat uncomfortably with other administration officials. He knew that Waxman and Weiss had come armed with more than the usual Democratic accusations of administration indifference; instead, they had a potent report drafted by the Office of Technology Assessment, the highly respected arm of Congress that is mandated to offer legislators nonpartisan analyses of complicated scientific issues. The OTA’s 158-page “Review of the Public Health Service’s Response to AIDS” completed the most extensive investigation yet undertaken on federal AIDS policy. It also was the reason that Dr. Mason was looking uncomfortable in the hearing room.

  “The OTA finds that while the federal government has designated AIDS our country’s number-one health priority, increases in funding specifically for AIDS activities have come at the initiative of Congress, and PHS agencies have had difficulties in planning their AIDS-related activities because of uncertainties over budget and personnel allocations,” the report concluded.

  With scores of footnotes, charts, and graphs, the report recounted in excruciating detail every twist in the sad tale of federal AIDS funding. The study documented the problems the CDC and the NIH faced in securing funds through each year of the epidemic, even while HHS officials solemnly talked of their top priority. The bitter rivalry that had engulfed federal AIDS agencies, particularly the ongoing disputes between the NCI and CDC, also were laid bare. Most striking, however, was the revelation that the government still had not created any serious, long-range plan for how it intended to fight and prevent AIDS in future years. Instead, the epidemic seemed to be handled haphazardly from year to year, with programs set not by health officials but by the budget cutters at the OMB.

  “The Reagan administration has pretended that AIDS is only a blip on the charts, a statistic that they hope will go away,” said Waxman when he opened the hearing. “Under the best epidemic projections, by the beginning of the next presidential campaign, AIDS will have killed as many people as the war in Vietnam. We cannot stand by and let those Americans die.”

  Privately, Dr. Mason had long felt torn over AIDS funding. He felt a duty to be loyal to the Reagan administration, but he also knew that an AIDS solution required more resources. The money the administration had budgeted for AIDS in the next year, he knew, was horribly inadequate. At least while Dr. Brandt was Assistant Secretary for Health, Mason could be confident that a proponent for AIDS funding was working in Washington. The administration, however, still had not bothered to find a permanent replacement for Brandt, leaving Mason to catch the flak. Like a good soldier, he did.

  “We agree with the OTA report that the number of AIDS cases is increasing rapidly and there is a real possibility that the infection may spread beyond current groups at risk,” Mason testified. “We are gearing up for a prolonged battle against AIDS.”

  Mason pointed to the “spectacular” advances made against the disease. “Never before in the history of medicine has so much been learned about an entirely new disease in so short a time,” he said. As for the $10 million reductions that the administration sought for AIDS funding in the next year, Mason was left to weakly argue that funds did not have to increase on a “one-to-one relationship” with AIDS cases.

  After nearly four years of work on AIDS issues, Waxman aide Tim Westmoreland felt vindicated to see the truth of the administration’s duplicity on AIDS policy revealed as graphically as it was in the OTA report. The reporters would never be able to ignore this now.

  Although the real blood and guts of the hearing would come in the cross-examination, thirty minutes into the hearing, the television crews started packing up. They had enough footage for their two-minute stories, and that was all they needed.

  As the crews trooped out, Waxman was chiding Mason for the budget reductions. Who decided spending, Waxman asked, doctors in the PHS or accountants at OMB?
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br />   Of the AIDS funding figures, Mason said, “We did not write them—they were numbers that were written down.”

  The reporters, however, weren’t around to hear this. Once again, the media response to the OTA report and the hearing on the report was truly underwhelming. The Washington Post ignored the report altogether. In The New York Times, the report merited six paragraphs on page fourteen, which were not published until four days after the report was released.

  Although the administration did not have to fret about reporters investigating their decision making, the report did make some impact on Washington in the weeks that followed, largely because of OTA’s credibility in government. Mason was embarrassed at having to defend the administration against such an overwhelming collection of evidence. After the hearing, the National Gay Task Force co-director, Jeff Levi, overheard Mason mutter, “I’m never going to be put in a situation like this again.” No longer satisfied to leave AIDS budget matters to Secretary Heckler, who clearly held little clout in the administration, Mason began showing up at the New Executive Office Building, where the OMB accountants worked with their spread sheets. AIDS was like a snowball going downhill, he warned them. It just kept getting bigger and bigger, and it wasn’t going to go away.

  One hundred callers a day flooded the phone lines at the AIDS Medical Foundation offices in the weeks after Jean-Claude Chermann’s presentation at the AMF conference about HPA-23. In Paris, Dominique Dormant was awakened in the middle of the night at his home by American AIDS patients desperate for treatments and irritatingly ignorant of European time zones. One American man called from the airport, pleading for treatment. He required an ambulance just to get to the hospital and proved too sick to be put on any experimental drug. He died in Paris ten days later.