And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (79 page)

“How can you share specimens with the French and not with Bob Gallo?” Haseltine shouted at Francis.

Around them, other scientists fell silent. Don Francis was stunned. The comment revealed that Gallo had shown Haseltine the private memos he had been circulating in the NIH complaining about the CDC.

“don’t get involved with things you don’t know anything about,” Francis shouted back. “Keep your nose out of it.”

Because the Reagan administration had relied on Gallo to take the political heat off the AIDS epidemic, the top officials at HHS and the Public Health Service supported the NCI. At one point, they ordered the CDC to stop referring to the virus as LAV in their research papers and instead defer to Gallo’s taxonomy of HTLV-III. The request was ludicrous: All CDC research was on the French-supplied LAV, if for no other reason than they couldn’t get HTLV-III from Gallo. Ultimately, the CDC persuaded higher administration officials to accept the compromise moniker of LAV/HTLV-III.

There were also problems publishing studies. During an argument over hiring Dr. Kaly, Gallo had sworn to Don Francis that “you’ll never get anything published.” Francis dismissed the pledge as an empty threat.

As the imbroglio grew more bitter, Francis noticed that good virologists were shying away from AIDS research, reluctant to become stuck in what had become a quagmire of scientific politicking. AIDS research had become “wretched, rank with politics,” Francis wrote in his journal that summer. “It’s lost all the fun and excitement of science.”

The intrigue played against the usual backdrop of funding shortages. By the summer of 1984, of course, Francis’s lab technicians were working with large quantities of the deadly LAV as well as large amounts of tissue from AIDS patients. His antiquated laboratories, however, did not have an autoclave to sterilize pans and instruments. Instead, technicians carried their contaminated trays and instruments down a hallway to another lab for cleaning. Doing this required the workers to precariously balance their materials in one hand while they turned the doorknob with their contaminated lab gloves. In the summer of 1984, Francis’s problems with doorknobs came to summarize his despair over adequate resources.

Fearing a viral spill or the spread of the pure AIDS virus from the contaminated doorknobs, Don Francis asked the building engineers for swinging doors so his employees could back out of the lab. Such doors were too expensive; it would take months to get approval for them. Francis then asked for the doorknobs to be replaced with the European-style hooks that hospitals routinely use instead of knobs. Thus, the techs could open a door with an arm while keeping both hands on AIDS-infected materials.

Francis wrote out his request, but nothing happened. He wrote more memos and discussed his safety concerns at every staff meeting, but nothing happened. Altogether, Francis agitated for four months before he was able to negotiate two $2.75 hooks for his lab doors.

Francis figured the funding problems dominated nearly 90 percent of his time. For example, he had conducted a nationwide search for another virologist to ease his staff’s load. Once employed, the scientist had to wait two months before he could get to work, because there wasn’t enough lab space for him. Francis gave up his office so it could be converted into a lab, but conversion took three months because the CDC didn’t have enough building engineers to do the construction.

Francis and his scientists were forced to do their paperwork on desks in hallways four floors above the sub-basement where their labs were located. The constant problems were taking a toll on his lab crew. Everybody worked until 2 A.M. every day. By that summer, one researcher in the virology lab was hospitalized with an ulcer; another developed severe hypertension.

As far as Don Francis was concerned, the reward for government work rested in impact. You didn’t get a hefty salary, a fancy office, or elaborate perks as a government scientist, but you could make a difference. Francis had beaten every virus he had fought; that was impact. He had helped wiped out smallpox and the dreadful Ebola Fever virus. But he couldn’t beat the system when it conspired to help the viral enemies of humankind. By the summer of 1984, Francis was beginning to feel thoroughly beaten down.

Resource problems frustrated every aspect of AIDS research. Until the end of 1984, only two scientists had received grants to conduct research on retroviruses and AIDS—Drs. Bob Gallo at NCI and Max Essex at Harvard. Despite his achievements, Gallo was given no new personnel for the stepped-up AIDS work his lab was expected to perform. When Gallo frequently mentioned his problems to other scientists, they laughed. Nobody believed him.

Most striking, however, was the deficiency in funds for research into treatments for AIDS. The LAV/HTLV-III discoveries opened the way for testing of experimental anti-viral drugs. One CDC doctor wanted to test ribavirin, a drug that had had some success against flu viruses. To test the drug’s efficacy, however, the doctor needed viral cultures on the blood of his subjects. Only with this capability could he determine whether the drug was reducing the level of virus in his test subjects’ blood. Don Francis had to reject his request because the CDC lab could make only fifteen viral cultures a week, and this capacity was required for more pressing work.

At the National Cancer Institute, Dr. Sam Broder was in charge of treatment strategies, and he too found little interest in developing anti-AIDS drugs. After all, the “miracle drug” advances of the past decades had come in treatments for bacterial organisms, which are independent life forms. Viruses and retroviruses, however, are not independent life forms but are pieces of genetic material that actually become part of the infected cell. Killing the virus means killing the cell. Science had yet to develop any successful treatments for viral diseases. Vaccines could create antibodies to protect people from infection, but they were not cures. Given the lack of success in fighting viruses in the past, some scientists believed that no treatment for AIDS would ever be found. Broder argued bitterly for at least exploring possibilities. “If you declare the patient terminal and don’t do anything to treat him, he’ll always die,” Broder said.

Meanwhile, Ed Brandt was aware of the discontent at all levels
of
the Public Health Service over AIDS funding, but he could do nothing. His May 25 request for expanded AIDS research continued to sit on Secretary Heckler’s desk, unanswered.

S
AN
F
RANCISCO

The shingles had started on the back of his neck and spread over the right side of his scalp to cover his forehead and right eye. Another outbreak had gone down his shoulder and over his chest. Just the movement of wind through his hair caused extraordinary pain. Cleve Jones was frantic by the time he got to the doctor’s office.

“Do you know what this means?” the physician asked.

“What?”

“All the young men who I’ve seen get this are developing AIDS.”

Cleve dragged himself to the nearest gay bar for a drink. A few days before, he had been on the assembly floor in Sacramento when he heard a familiar name being read as the day’s session was adjourned. It was Frank, the lawyer from Long Beach with whom Cleve had had his brief affair in 1982. The assembly was being adjourned in Frank’s honor that day because he had just died of AIDS. Another boyfriend had died a few weeks before. Cleve’s romantic interest from the summer of 1980, civil rights lawyer Felix Velarde-Munoz, had suffered a bout of
Pneumocystis.

Together, Felix, Frank, and Cleve had helped chart a new world for gay people, and now one was dead and another was doomed. Cleve wondered when this nightmare would consume him too. He gulped another vodka tonic; he knew he would have to get drunk this afternoon. He felt adrift. There was no way out.

Cleve’s own aimlessness reflected the gay community’s confusion over the epidemic. The bathhouse controversy had defied resolution, turning into an only-in-San Francisco political controversy full of unexpected twists. In early June, it was revealed that Mayor Feinstein had dispatched police investigators into the bathhouses to don towels and write a report on the activities within. She had commissioned the research in March, in the wake of the Littlejohn initiative, presumably to get data that would strengthen her hand with the wavering public health director. The disclosure of the investigation three months later, however, angered the mayor’s friends and foes alike, because it conjured memories of the days when police officers raided bars and bathhouses to enforce their Irish Catholic morality.

Feinstein countered her critics by forthrightly demanding that Silverman “have the guts” to shut the bathhouses before the imminent Gay Freedom Day Parade. “You go to the AIDS Ward and you see young people dying and you feel a strain,” she said. “Dr. Silverman should take his medical information, make a decision and go with it—not count hands to see what is popular.”

The proposed ordinance to transfer bathhouse licensing authority from the police to the health department continued to be stalled in the board of supervisors. After hearing testimony from such noted public health experts as the Bay Area Lawyers for Individual Freedom and the American Association for Personal Privacy, a supervisors’ committee decided that they would postpone making any decision. The supervisor proposing the seven-week delay was Supervisor Richard Hongisto, who had said in March the baths should be closed because he was spending too much time at funerals of gay friends. Hongisto was thinking of running for mayor in 1987.

Even while gay political leaders were making bathhouses their top issue, support for the facilities steadily dropped within the community itself. With patronage plummeting, member clubs of the Northern California Bathhouse Owners Association joined to take out full-page ads in gay newspapers offering half-price coupons that carried a full reprint of the group’s “Resolution Regarding an Objective Response to AIDS” on its reverse side. The business decline, however, proved lethal for many bathhouses and private sex clubs. The Hothouse, Cornholes, and Liberty Baths were gone. The cells at the Bulldog Baths were locked for the last time. The Cauldron announced “The Last J-0 Party” and threw in the sling.

The most festive closing came at the Sutro Baths, the city’s only “bisexual bathhouse,” which catered to males and females of all sexual orientations. Over 500 went to its three-day Farewell Orgy in early June to nostalgically recall the Sutro’s carefree early days. The festivities climaxed when five people who were losing their jobs because of the bath closure lined up on the stage and stood over a barbecue, burning AIDS brochures.

“If we can’t pass them out, we might as well burn them,” reasoned Sutro’s owner. The logic was abstruse for most people, however, and the sight of the bathhouse employees publicly burning AIDS-prevention guidelines became one of the most enduring images of the AIDS-stricken gay community in San Francisco that summer.

With the advent of summer, general interest in the epidemic fell precipitously. Between July and September 1984, the nation’s major print news organizations published only 266 articles on AIDS, the lowest level of reportage on the epidemic since the first quarter of 1983. This amounted to about one-third the number of stories written by the same publications during the height of the media blitz in the summer of 1983.

What did increase was the number of people dead or dying. In the last week of June 1984, AIDS cases in the United States surpassed 5,000. The epidemic had spread to forty-six states, and nearly 2,300 had died.

July 1984

R
AYBURN
H
OUSE
O
FFICE
B
UILDING,
W
ASHINGTON.
D.C.

In virtually every subsequent interview on the AIDS epidemic, Assistant Secretary for Health Ed Brandt denied leaking a photocopy of his May 25 memorandum to Secretary Heckler seeking $55 million in new AIDS funds. Even so, Brandt frequently joked that he was reading copies of his memorandum in the
San Francisco Chronicle
before his secretary got them out of her typewriter. Tim Westmoreland, counsel to the House Subcommittee on Health and the Environment, suspected Brandt; but when a copy of the memo arrived in a plain brown envelope in his office mail, Westmoreland was less concerned about the identity of his mystery correspondent than jubilant over the memo’s appearance. At last, Westmoreland had his smoking gun.

Certainly, the surfacing of Dr. Brandt’s twenty-two-page memo proved the watershed event in the AIDS budget battle of 1984. Its delivery could not have come at a more fortuitous moment. Congress was about to begin deliberations on the next fiscal year’s budget, and the administration still maintained that AIDS funding was entirely adequate.

Even after the HTLV-III announcement, Reagan officials had not requested any additional AIDS funds for the next year’s budget. The official administration request for the fiscal year due to start on October 1 stood at $51 million, a mere 6 percent increase over the previous year’s AIDS spending. Although mounting AIDS caseloads indicated the need for drastically increased funding, liberals had no persuasive documentation. Brandt’s memo lifted the camouflage off administration claims that doctors had all the resources they needed. Here was the Reagan-appointed health secretary himself making the case for more money.

Within days, Westmoreland had distributed additional copies of the memo to sympathetic legislators on Capitol Hill. Various members of Congress privately relayed their dismay to Secretary Heckler and hoped that the administration would boost its AIDS request. Their entreaties, however, found no response. Westmoreland leaked a copy of the story to the
Washington Blade,
a gay paper distinguished by its investigatory articles on AIDS funding. He hoped some major East Coast paper would pick it up and run with it. The
Blade
ran the story on page one, but the eastern newspapers weren’t printing stories on AIDS, so it was ignored.

July 13

U
NION
S
QUARE
, S
AN
F
RANCISCO

Six men, dressed as nuns, gathered ritualistically around a table where a woman was being held down.

“We are here to exorcise lies and prejudice,” shouted Sister Boom Boom to the crowd of 2,000.

The pinioned woman was playing the part of Phyllis Schlafly, the anti-feminist leader who had spearheaded opposition to the Equal Rights Amendment. Schlafly was appearing a few blocks away at an anti-gay “Family Forum” hosted by the leader of the Moral Majority, Rev. Jerry Falwell.

“Phyllis Schlafly’s heart is corrupted with fear and greed,” shouted Boom Boom. “We shall remove her heart of lies and fear, and replace it with a heart of purity and love.”

From the folds of the woman’s dress, Boom Boom pulled a rubber snake and tossed it in the air.

Moments later, a man walked out dressed as Falwell, and the assembled Sisters of Perpetual Indulgence ripped off his pants, exposing fishnet stockings and a black corset.

“Cast off the demons of shame and repentance,” Boom Boom intoned.

The Democratic National Convention had arrived in San Francisco.

More than 2,000 reporters had gathered for the meeting, due to start in a few days, and they were being treated to much local color in an unusual array of demonstrations and political protests. Delegates from the Second International Hookers’ Convention marched for Prostitutes Rights; advocates of marijuana legalization held a “smoke-in.” At the site of the Family Forum, earnest members of the Revolutionary Communist Party and other radical groups were fighting with police officers. At City Hall, an environmentalist named Ponderosa Pine, who frequently dressed up as a tree, was leading an “All Species Rally” of fellow ecologists who had donned plant, bird, and fish costumes to call attention to the “fate of other species.”

Unable to resist, Jerry Falwell also came to the city and took out newspaper advertisements, asking Democrats to “return to moral sanity” and not provide homosexuals with “special recognition and privileges under the law.” The fact that both the Catholic archdiocese and the San Francisco Council of Churches had officially asked Falwell to avoid San Francisco did not deter him and thus came the predictable protests from gay men dressed up as nuns.

Republican leaders were privately ecstatic that Democrats had chosen the gay mecca as their convention site. This allowed the Sisters of Perpetual Indulgence to stroll into America’s living rooms on the evening news as an unofficial welcoming committee for the loyal opposition. Fundamentalist ministers across the nation asserted that the Democrats had become the party of the “three A’s”—acid, abortion, and AIDS. Mainstream Republicans were more circumspect, although campaign rhetoric routinely included references to the “San Francisco Democratic Party.”

The fear of just such a label had created some reluctance among Democratic leaders to include overt references to gay rights and AIDS in the party platform, setting the stage for Bill Kraus’s last political battle. Once again, Kraus served as a member of the party’s platform committee. The committee chair, Representative Geraldine Ferraro, was eager for the platform to contain only generic language opposing discrimination against all minorities. With sixty-five lesbian and gay delegates from a score of states, Kraus threatened a floor fight over gay rights. You don’t beat the redneck Republicans by becoming one of them, he maintained. Privately, he also alluded to the fact that he wouldn’t predict what those unruly street radicals might do if the platform didn’t include explicit support for gay rights. In the end, Kraus finagled the most sweeping endorsement that any major party had adopted for gays, including a pledge to end the exclusion of gays from the military and as immigrants. The platform put the party on record as promising to end violence against gays and to bolster spending to “learn the cause and cure of AIDS.”

The priority that Bill Kraus and San Francisco gay leaders put on AIDS irked gay activists from other parts of the country. As they gathered in San Francisco for the convention, they gossiped that California leaders were obsessed with the disease. The National Gay Task Force had not even wanted, to address AIDS as a separate issue, arguing that it should be included as a subcategory in an overall statement about “health concerns.” For their part, gay Republican groups heartily endorsed President Reagan’s reelection, determined to show that they were not “single-issue” political activists. Meanwhile, the American Association of Physicians for Human Rights largely avoided any stand on the federal role in the AIDS epidemic, channeling its energies into such issues as criticizing medical journals for using such “judgmental” terms as “promiscuous” in articles about AIDS risk factors.

Two days before the convention opened, bathhouse owners quickly let their priorities be known in a meeting of the National Coalition of Gay and Lesbian Democratic Clubs. For the preceding two years, Gwenn Craig, former Milk Club president, had served as co-chair of the group. However, bathhouse owners controlled gay Democratic clubs in Miami and Chicago. Even before arriving in San Francisco, they were campaigning against Craig, frequently referring to her support for bathhouse closure. As a first order of business at the coalition’s San Francisco meeting, Craig was ousted from her post, although she continued to serve as chair of the convention’s gay caucus.

The next day, 100,000 lesbians and gay men gathered on Castro Street to march to the convention site. Their numbers filled the neighborhood. Demonstration leaders were busily reassuring the press that the march was not a protest but a show of support for Democrats, and, as he had on the sunny June day four years before, Bill Kraus walked at the front of the throng with other delegates and party officials. As the group strode toward downtown, Kraus thought back to the Gay Freedom Day Parade on that sunny afternoon in 1980.

How different the goals and the future of the gay movement seemed now, Kraus thought, and the nagging question returned to him: How many of these people will be alive for the next presidential election?

July 25

N
EW
Y
ORK
C
ITY
H
EALTH
D
EPARTMENT

The city-sponsored conference on the implications of the HTLV-III antibody test marked a novel development for AIDS policy in the United States. For the first time, officials were planning for a problem before it happened. The unprecedented foray into intelligent AIDS policy planning was indeed timely. No issue would prove as complicated and potentially volatile as AIDS testing, and the battle lines drawn at the New York City conference would mark debates that accompanied use of the AIDS test for years to come.

Within days of the Heckler HTLV-III press conference in April, scientists and AIDS organizers knew that the advent of the blood test would create a public policy problem. Federal health officials saw the test as a rare opportunity to define the extent to which the AIDS virus had penetrated the United States. At last, they would be able to see the part of the iceberg of AIDS infection that lay below the visible tip of full-blown, CDC-defined AIDS cases. Traditionally, efforts to control any disease began with authorities determining who was infected and who wasn’t, and then keeping the infected people from giving it to the uninfected. Obviously, the antibody test, once licensed for widespread use, would be an essential tool in making such a determination.

Don Francis, for one, was itching to implement widespread voluntary testing for gay men. Jim Curran also viewed testing as essential to any long-term strategy in fighting AIDS. That’s what Curran told the 200 health officials and AIDS workers who had assembled for the New York conference.

Paul Popham, president of Gay Men’s Health Crisis, moved uncomfortably in his chair when he heard the enthusiastic support for antibody testing. The antibody assay, he knew, could be used in effect as a blood test for sexual orientation. He thought about the new estimates that the typical AIDS patient needed $100,000 in medical care, and wondered what insurers might do once they got this test. “If the insurance industry can find relief from these enormous expenditures, it will,” Popham said, voicing concern that no gay man would be able to get an insurance policy once the test became available.

Other gay leaders cited concerns with employment and confidentiality. If test results were easily accessible, people with antibodies could be subject to a wide array of discriminatory moves. Already, the
New York Native
had written a story predicting that people with positive antibody tests might at some point be ordered to report to quarantine camps.

Either the Food and Drug Administration or the National Institutes of Health could have allayed such fears had they simply announced that test results were subject to federal confidentiality guidelines, such as those used routinely in other federal health projects that involve such sensitive personal matters as alcoholism and drug abuse. The mechanism for granting confidentiality was already in place; it could be enacted with the stroke of a pen.

Federal health officials were reluctant to take this act, fearing it would be viewed as coddling homosexuals at a time when the election-minded administration was taking a more forthright anti-gay stance. For public consumption at the New York meeting, however, the agencies maintained that such a federal move would be “too restrictive,” and that gays should lobby each institution administering the test to issue such assurances. The suggestion brought loud guffaws from the audience.

“Why burden the community with that?” asked Rodger McFarlane, GMHC executive director. “The feds should require uniform statements of confidentiality.” Without such guidelines, McFarlane added, he would suggest that gay men not participate in AIDS research involving the antibody test.

Cooperation remained the trump card that gay community leaders held in negotiations with the federal government. For the past three years, the gay community had provided some of the most helpful study subjects in the history of medical science. Virtually everything the federal researchers understood about AIDS epidemiology stemmed from this unprecedented cooperation. The gay community’s good faith, however, was running short, given the lack of reciprocation on the part of the federal health establishment.

Already there was difficulty enlisting volunteers for a NIAID study of San Francisco gay men by University of California researchers because it involved antibody testing. The threat of noncooperation was the only leverage gays had in the debate. Federal officials were sufficiently uneasy at the end of the New York City meeting that they pledged to listen to more “community input” on the issue before making any final policy determination.