And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (89 page)

The Office of Management and Budget was tired of the repeated HHS requests for budget augmentations. As far as they were concerned, Heckler could do whatever she wished with the $8 billion pot of money the administration allocated to all the nation’s health agencies. It wasn’t that they didn’t want to give her more money to spend on AIDS; they just didn’t want to give her more money. Budget officials thought the directors of the NCI, CDC, and NIAID tried to gain new money for AIDS research because they were too cowardly to tell their own scientists that their pet projects needed to be cut in favor of AIDS studies.

In Congress, many of the congressional aides were beginning to balk. It had been their behind-the-scenes maneuvering that had secured added appropriations for AIDS research in previous years, and some of them now confided to the National Gay Task Force co-director, Jeff Levi, that they were tired of making President Reagan look good. It seemed that no matter how much administration officials worked to oppose funding initiatives on Capitol Hill, they were always ready to take credit for the research advances that resulted from funds that were provided.

No congressional spokesperson for AIDS issues had yet emerged in either the Senate or the House of Representatives. Most AIDS legislation was handled by Representatives Henry Waxman of Los Angeles or Ted Weiss of New York City, but both were subcommittee chairmen with other issues to attend to. Neither of San Francisco’s two representatives, Barbara Boxer or Sala Burton, had made AIDS their top priority; they focused instead on environmental and defense issues. Without a legislative spokesperson, the work for getting AIDS money would again fall to such gay lobbyists as Jeff Levi and a handful of key congressional aides, such as Tim Westmoreland. AIDS remained something of an orphan issue in Congress. Neither the staggering AIDS caseload nor the increasingly apocalyptic predictions of future deaths made much difference.

On the same day the Reagan administration released its budget, health authorities in Hong Kong announced the diagnosis of the first case of AIDS on the Asian mainland. The forty-six-year-old Chinese seaman had spent a vacation in Miami last year, officials said, and now was near death in a Hong Kong hospital.

The AIDS epidemic had now spread to every populated continent on the planet.

C
ENTERS FOR
D
ISEASE
C
ONTROL,
A
TLANTA

The chief assistant to Dr. Walt Dowdle, director of the Center for Infectious Diseases, encountered Don Francis in a hallway at CDC headquarters.

He gave Francis the verdict on his ambitious “Operation AIDS Control.” The CDC didn’t have the funds to finance the project.

The recommendation to Francis was, “Do as little as possible but look like you’re doing a lot.”

Francis had decided what he would do if he could not initiate his AIDS-control effort. He couldn’t stand spending more time banging his head against the administration’s stone wall. As it was, the AIDS efforts at the CDC were being reorganized into a separate branch, and the epidemiology and lab work were being merged. It was a convenient time for him to depart. He had informally lined up a new job as CDC liaison on AIDS to the California Department of Health Services. He was going to leave Atlanta.

February 8, 1985

H
ARLEY
H
OTEL
, N
EW
Y
ORK
C
ITY

Dr. Joseph Sonnabend looked troubled. The panel of journalists, which included most of the nation’s leading reporters on the AIDS epidemic, looked confused.

“The implications are terribly important,” said Sonnabend cautiously.

Sonnabend, one of New York City’s leading AIDS doctors, was trying to explain the significance of an earlier presentation by Dr. Luc Montagnier in the day-long AIDS conference co-sponsored by the AIDS Medical Foundation and the Scientists’ Institute for Public Information.

In his patrician, professorial manner, Montagnier had described the genetic sequencing the Pasteur Institute had performed on the prototypes of the three AIDS viruses, LAV, HTLV-III, and Jay Levy’s ARV. The gene sequences of the French LAV and ARV varied by about 6 percent, which was normal, the scientists at the conference agreed. The genes of any two different isolates of the AIDS virus are expected to deviate from each other, usually by 6 to 20 percent. Montagnier’s lips tightened, however, when he said flatly that the genetic sequence of the HTLV-III prototype isolate had varied from LAV by less than one percent.

Those words started the AIDS researchers present mumbling among themselves, even while the reporters yawned. Journalists had long assumed HTLV-III, LAV, and ARV were all different names for one virus. The reporters, however, were missing the point.

“It would appear that HTLV and LAV are too identical,” Sonnabend said, stepping delicately around the fundamental issue. “They are identical to a degree that would not be anticipated with two independent isolates from the same family.”

The reporters still didn’t get it. The doctors did, but they were afraid to say it aloud.

“Would you be brave enough to voice explicitly the implication of what you’re saying here?” one doctor shouted to Sonnabend.

“No, I wouldn’t,” Sonnabend answered. “I’m not the right person to be saying that.”

“Neither am I,” the other doctor said.

“What are you talking about here?” asked the Associated Press reporter.

“Do you know something that you’re not saying?”

“They appear to be the same actual isolate,” Sonnabend finally said. “Or some strange coincidence.”

“What are you suggesting?” somebody asked.

Dr. Mathilde Krim, who had organized the conference, stepped to the microphone.

“Dr. Montagnier,” she said, “felt very appropriately that he was not the person to point this out.”

“Nobody’s pointed it out quite exactly yet,” said one of the exasperated reporters.

“It’s perhaps a complicated notion for you to understand,” Krim said, “but I think you are coming close.”

Veteran science writer Donald Drake of the
Philadelphia Inquirer
was one of the two or three journalists in the room who understood the implications of Sonnabend’s remarks.

“Are you suggesting that Gallo swiped his virus from the French?” Drake asked.

“Or Montagnier swiped Gallo’s virus, or we are dealing with a very strange coincidence,” said Sonnabend diplomatically.

“A light bulb goes off,” said the
San Francisco Chronicle
reporter on the panel.

The reporters now understood what the scientists had been discussing in Harley Hotel hallways all day. In the world of virology, it was inconceivable that there could be a genetic variation of less than one percent between two different isolates of this virus. That would be like finding two identical snow-flakes. It simply didn’t happen.

What made the similarities more unlikely was that the prototype isolates of LAV and HTLV-III were supposed to have been taken seventeen months apart, from two different men living on two different continents. The only way to account for the identical properties of the two prototypes was if they were the same virus taken from the same person.

Montagnier knew enough about the chronology of Gallo’s discovery to be suspicious, although he never publicly made the accusation himself. Even by Gallo’s own account, he did not isolate HTLV-III until late 1983—well after September 1983 when the Pasteur Institute sent him LAV samples. To both the French researchers and many of the AIDS doctors at the conference that day, Montagnier’s comparisons indicated that the NCI prototype of HTLV-III, announced in April 1984, could have been grown out of the same cells the French had cultured in January 1983. If it had, this had the makings of a scientific scandal of immense proportions.

On a number of counts, the AIDS Medical Foundation conference in New York on that bitterly cold Friday in February delivered the first sign of what was to come in the AIDS epidemic. The butcher’s bill was so high that long-tolerated transgressions could no longer be ignored. Reckoning was at hand.

Always looking for a new way to interest reporters in the epidemic, Krim had put together this conference in an attempt to get the crème de la crème of AIDS scientists and AIDS journalists into one room. Hidden agendas abounded, and many of the key AIDS players who had first committed themselves to attend the conference suddenly took waivers.

At the last minute, for example, Secretary Heckler canceled her keynote address, pleading the flu. Maybe it was because she had heard that Krim planned to talk about the “fabricated figures” the federal government was using to justify its claims that it was spending enough on AIDS research. And Dr. Robert Gallo had also canceled at the last minute.

Pasteur researcher Jean-Claude Chermann attended the conference to present data on the promise of HPA-23 experiments. Not coincidentally, Krim and other New York clinicians were spending substantial time pleading with a reluctant FDA to speed approvals on experimental treatments for AIDS drugs. Meanwhile, Montagnier’s talk on the genetic properties of LAV came as a growing body of evidence was accumulating in support of his contention that LAV was not a leukemia virus related to the HTLV family but a lentivirus, as the French had long maintained. The issue now was of more than academic interest, given the fact that some AIDS researchers were diverting their attention to studies on HTLV-I and HTLV-II in hopes that these allegedly related viruses might yield answers to the mysteries of HTLV-III infection. Clearly, such work was wasted if HTLV-III was wholly unrelated to the other HTLV viruses. There were significant points of prestige in this as well, now that Stockholm Fever had swept the small community of AIDS researchers.

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.

P
UBLIC
T
HEATER
,
M
ANHATTAN

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.