And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (90 page)

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 spared 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

R
AYBURN
H
OUSE
O
FFICE
B
UILDING
,
W
ASHINGTON
, 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?

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.

French scientists warned that the Pasteur Institute was not a temple where an instant AIDS cure could be found, and some resented the U.S. government for placing such a low priority on AIDS treatments that Americans were embarking on the overseas hegira for HPA-23. “The United States is not a Third World country,” said Dr. Philippe Sansonetti of the Pasteur. “I don’t like the idea of being, sort of, Lourdes.”