by Randy Shilts
“Every day there are deaths that are a monument to your irresponsibility,” Waxman berated the HHS budget chief.
The final allocation passed within hours of the conference negotiations and represented a 60 percent increase over what President Reagan had requested for AIDS funds. It marked the fourth fiscal year in which Congress had constructed its own AIDS budget over the objections of the administration. The budget included $58 million for the National Institutes of Health and $23 million for the Centers for Disease Control.
The day after Congress appropriated these funds, Dr. Edward Brandt announced he was leaving the administration at the end of the year.
Days after adjournment, however, another dispute erupted between Congress and the administration. Included in the last-minute appropriations was an extra $8.35 million for the Food and Drug Administration to rush the development of an HTLV-III antibody test. The administration, however, decided it would only use $475,000 of the funds for the blood test, allowing the rest of the money to revert back to the treasury. Already, the administration was behind on its April promise to have a blood test available in blood banks within six months. The reluctance to spend money to speed the test stupefied both Republican and Democratic senators. The ensuing outcry, however, created little interest within the news media and brought no response from the administration.
October 25
CASTRO THEATER, SAN FRANCISCO
The premiere of a documentary film on Harvey Milk moved Bill Kraus briefly back to the glory days of the gay movement in San Francisco, when the enemy was Anita Bryant, not some virus, and the dream seemed so clear. After the lights rose and the applause faded, everybody congratulated Bill on how articulate he had been in the movie when he described what it was like marching with candles toward City Hall.
From across the theater, Cleve Jones saw Bill surrounded by admirers. Cleve had heard that Bill had been diagnosed, but Bill’s friends had also made it a point to tell Cleve he would not be a welcome guest at Bill’s doorstep. Bill’s friends had not forgiven Cleve for withdrawing his support for bathhouse closure six months before. Bill’s diagnosis came as the latest blow to Cleve, who walked daily in a cloud of constant personal despair. Of four roommates he had had in 1980, two were dead from AIDS and a third was suffering from ARC. Cleve’s excruciating shingles infection had cleared, but his lymph nodes remained swollen. And now Bill.
As he made his way out of the theater, Cleve wondered if Bill recalled everything about that night when Harvey Milk and George Moscone were killed. Cleve and Bill had made love that night, after the candlelight march. Characteristically, Bill tended to be less sentimental about the episode and dismissed it as an aberration in his tastes. Cleve had had a crush on Bill ever since that night, however, and it had never died. Now Bill hated him. The epidemic had barged into all their lives like some rampaging bull and left only destruction. Cleve wandered to the Elephant Walk bar for a drink.
As Bill left the theater, he ran into an old acquaintance, who also had been diagnosed with AIDS. Steve Del Re told Bill about this experimental drug the French were using, HPA-23. He was going to Paris to try the drug. Bill might think about it too.
On Halloween, Bill had dinner with Marc Conant and a journalist friend who had traveled to Paris recently to interview Pasteur Institute researchers. The reporter played a tape of an interview with Dr. Willy Rozenbaum discussing the immune studies of an AIDS-stricken hemophiliac.
“He has the immune system of a normal person,” said Rozenbaum. “This drug works.”
Bill Kraus was euphoric. All his denial and bargaining had one name now: HPA-23. He was going to survive.
50
THE WAR
November 1984
On November 6, Ronald Wilson Reagan was reelected president with the biggest electoral-vote landslide in nearly fifty years. Democratic candidate Walter Mondale carried his home state of Minnesota and the District of Columbia; Reagan won the rest. Throughout the campaign, the burgeoning AIDS epidemic never became an issue of import. Neither candidate made any public pronouncement on the administration’s “number-one health priority,” and no reporter thought the issue significant enough to raise. In fact, President Reagan had never publicly spoken the word AIDS or ever alluded to the fact that he was aware that an epidemic existed.
When claiming victory on election night, President Reagan told a cheering crowd, “America’s best days lie ahead.” It was during the month of Reagan’s reelection that the nation’s AIDS caseload surpassed 7,000.
PASTEUR INSTITUTE, PARIS
The emergence of the harsh nationalism that marked the French-American rivalry among AIDS researchers was an unusual phenomenon in the scientific world, but the problem continued to fester. Most scientists on NCI grants or collaborating with Dr. Robert Gallo sided with the National Cancer Institute. Since the lines of scientific collaboration tended to follow the routes of the Eastern Airlines shuttle on the Atlantic coast, researchers at such West Coast centers as Stanford, UCSF, and UCLA collaborated more with the French scientists and sympathized with their side of the rift.
Dr. Michael Gottlieb from UCLA, who first reported the epidemic, decided he should be a senior statesman of AIDS research. He also was feeling left out of the virologic action, now that the focus of AIDS research had shifted to East Coast laboratories. The French, constantly overshadowed by the publicity that Gallo and the NCI garnered, were ecstatic at any glimmer of recognition for their research, and they welcomed Gottlieb when he came for a visit in November.
Gottlieb was impressed at the Pasteur team’s enthusiasm, as well as with what they had been able to accomplish on extremely limited resources. Like most European governments, the French had not invested in AIDS research, figuring the vast American scientific establishment would make key AIDS discoveries from which the rest of the world could benefit. The entire AIDS budget for the Pasteur Institute was a few million dollars. With this, the Pasteur was coordinating extensive blood testing on serums from Africa, where French and Belgian researchers were tracing the heterosexual spread of the disease. In the Paris labs, the French also were exploring the genetic properties of the AIDS virus.
Because both the NIH and the scientific establishment in the United States largely continued to ignore research on AIDS treatments, the Pasteur Institute had become the world’s most important center for treatment research. The French were eagerly testing all sorts of drugs on AIDS patients, all of whom were more than willing subjects since they knew the alternative to treatment was death. Drs. Willy Rozenbaum and Dominique Dormant were thrilled with the success of HPA-23, the drug with which Dormant had treated Gottlieb’s patient, Rock Hudson.
The French focus impressed Gottlieb, because nothing frustrated him more than the inability to offer any hope of treatments to his eager patients. The U.S. government had taken a business-as-usual approach to AIDS treatment. For example, when the FDA had recently approved isoprinosine for experimentation, it allowed for testing on only 200 patients throughout the country. Under standard scientific procedures, the tests would be both controlled and double-blinded. Half the subjects would be given isoprinosine and the other half a placebo. To ensure that no one’s expectations biased the results, neither doctor nor patient were allowed to know who was getting which. The protocol made scientific sense. The limitations on study participants ensured that untested drugs that might have serious harmful side effects were not distributed unnecessarily to large numbers of people. Only through such controlled experiments could science really, and relatively rapidly, determine whether a drug actually did hold promise as an AIDS treatment.
These scientific principles, however, were difficult to explain to patients facing a death sentence. Gottlieb knew of scores of Los Angeles patients who were driving to Mexico for isoprinosine and ribavirin, another drug reputed to have antiviral effects even though it was not licensed in the United States. Every week, more Americans arrived in Paris pleading for HPA-23 treatments as inform
al word of its potential spread on the AIDS grapevine.
The Pasteur doctors considered Americans barbarous for not aggressively pursuing every possible means of treatment. Double-blind studies were cruel and inhumane, they thought; the patient who receives a placebo is precluded from any chance of survival. Every patient who wanted it should get some kind of treatment, the French said. “You Americans let people die without any hope,” Rozenbaum told a California reporter that autumn. “What do these people have to lose?”
For all their enthusiasm, Gottlieb saw that the French were poor scientific games players. One reason they had found difficulty in getting their research published and accepted in the United States was because they were inexperienced at writing papers for American scientific journals. They did not present their data as well as American scientists. The Pasteur’s primary spokesman, Dr. Luc Montagnier, lacked the charisma and forcefulness of Gallo.
In Paris, the Pasteur researchers asked Gottlieb to help frame their article on the early success of HPA-23. One reason the French were eager to publish was because they were afraid they would be upstaged again by Gallo’s work on suranim treatments.
The Pasteur team remained dispirited by their inability to gain recognition for their achievements. As they plodded from conference to conference, they continued to see their work slighted and the viral discovery they had made attributed to others. By the end of the year, Montagnier sighed, “I have learned more of politics than of science during all this. I never thought I would have to be a good salesman in order to be heard.”
“The war,” as Rozenbaum called it, simmered on the American front as well. Gallo was conducting a memo battle with the Centers for Disease Control because the CDC continued to refer to the AIDS virus as LAV/HTLV-III. Medical journals were returning to Dr. Jay Levy at UCSF his papers on the virus, which he called ARV, saying he should refer to it as HTLV-III. The reviewers who wanted the name change, Levy noted, were usually scientists on NCI grants. At one point, Gallo himself suggested that everybody should “throw out the name AIDS” and instead call the syndrome “HTLV-III disease.” This would remove the stigma that the word AIDS now conveyed, he suggested.
UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
When Marc Conant was in college and told his staunchly Catholic mother that he no longer believed in God, she scolded him. “Some day you’ll be dying and you’ll need it,” she had said. “You’ll return to the church.”
The comment always bothered Conant. The idea that Catholic mysticism might rise again to overwhelm his good judgment ran against the grain of his scientific rationalism. At Duke University, he even minored in theology, hoping that by understanding religious totems, he would not succumb to their superstitions. Conant’s lingering fear that he might one day surrender to mysticism is what made Bill Kraus’s decision to go to Paris all the more upsetting.
In Bill Kraus, Marc Conant saw a younger mirror of himself. Like Conant, Bill was cerebral and articulate, and he had long ago shed the denial about AIDS. Now Bill was seeing a mystic healer and chasing the rainbow of some untested drug in an exotic, faraway land. It was denial and bargaining, Conant thought. It most certainly was not intelligent.
Bill was equally adamant about the trip to Paris. He had made his decision after the second lesion appeared in November. Walking along the windswept cliffs at Land’s End, above the pounding surf of the Pacific, he had told Catherine Cusic that he was frightened of the depression that had settled on the San Francisco gay community. He didn’t know what else he could do. Bill bolted at the suggestion that he talk to the grief counselors at the Shanti Project, a group that he frequently called “the Angels of Death.” Bill told Catherine, “They tell people how to die—I want to live. I want to go to Paris.”
Catherine had to agree that a morbid fascination with death pervaded the Castro neighborhood. And in the growing number of obituaries in the gay papers, people didn’t just die of AIDS anymore. Instead they left this plane, departed this incarnation, or went to the other side. Bill chortled when one of his friends confided that, if he got AIDS, he wanted his obituary to read that he kicked the bucket. Nevertheless, Bill had surrendered to his own mysticism as well, spending his hours in visualization of good health or in daydreams about the promise of HPA-23.
Although many of Bill’s friends looked askance at his increasingly metaphysical leanings, everyone noticed how his mood lifted when he decided to leave. They made plans to help finance the trip and began scheduling visits to Paris so Bill would never have to live there alone. The pieces fell quickly into place. Through his political connections, Bill would have the best treatment. Research would continue in the United States because of money he had helped to obtain. He would have the support of a community he had helped organize.
Ironically, it was with Kico Govantes, whose superstition had once been the butt of so much of Bill’s teasing, that Bill could most freely discuss his changing attitude toward spirituality. For all his Catholic upbringing, Bill was awed at the realization that he did have a soul, that there was a pure spirit within him that he could tap for strength. And Kico had to laugh when he saw a copy of the Bhagavad Gita at Bill’s bedside one night.
Bill was defensive. “It’s a good book,” he said. Then Kico reminded Bill of how he had ribbed Kico four years ago when Bill had seen the same book by Kico’s bed. That was the night they had met, Kico reminded Bill.
“Four years ago,” mused Bill, his voice echoing with wonder at all that had been lost and all that was being found. “Just four years ago.”
November 28
SAN FRANCISCO
Before a hushed courtroom, San Francisco Superior Court Judge Roy Wonder issued a ruling aimed at balancing public health and private rights. Wonder said the bathhouses could reopen, but only if they hired monitors who would survey the premises every ten minutes and expel any men engaging in unsafe sexual practices. Moreover, the bathhouses had to remove all doors and private places where such acts might occur unobserved. Any violations of his order could result in closure.
The ruling put into effect the anti-sex regulations that Dr. Mervyn Silverman had proposed in mid-April. Gay attorneys declared the ruling a partial victory, although bathhouse owners were dubious. In the two months since they were shut down by Silverman’s order, several had gone out of business. For all the talk of bathhouses as places where gays exercised their First Amendment rights to freedom of association, bathhouse owners understood more than anyone that gay men only went to their establishments to screw. Most of the bathhouses never bothered to reopen in the weeks after Judge Wonder’s order. Some did, but business fell dramatically. One by one, bathhouses and sex clubs started shutting down, and the issue largely faded from the city’s consciousness.
With the bathhouse issue out of the way, the San Francisco Department of Public Health finally put into place an aggressive education program that minced no words in exhorting gays to change their sexual behavior. Billboards, dramatic ads in gay newspapers, and public service television announcements became part of a hard-hitting program that quickly became a national model. It didn’t escape notice among Bill Kraus’s friends that the campaign finally instituted in late 1984 was virtually identical to one that Bill Kraus had drawn up over a weekend in mid-1983, sixteen months earlier.
AUSTRALIA
Even as the last news analyses on the U.S. presidential election were being written, AIDS suddenly exploded as a potent issue in an otherwise dull federal election campaign Down Under. The controversy started a week after Reagan’s reelection, when the health minister of Queensland Province announced that four babies had contracted AIDS from blood donated by a Brisbane man. Three of the babies to receive the blood, which had been donated in February, were already dead; a fourth was dying. The twenty-seven-year-old gay donor had no AIDS symptoms, although subsequent testing showed he harbored HTLV-III antibodies. To date, the continent had been home to only twenty-six AIDS cases, of whom nine had died. These first de
aths outside the gay community, however, proved a lightning rod for critics of the ruling Labor government of Prime Minister Bob Hawke. Within a day, the Queensland legislature passed a law imposing a stiff fine and a two-year prison sentence on any member of a high-risk group who donated blood.
Conservative opponents immediately blamed Labor’s support of repeal of the nation’s old sodomy laws. “If it wasn’t for the promotion of homosexuality as a norm by Labour, I am quite confident that the deaths of these three poor babies would not have occurred,” said Ian Sinclair, leader of the right-wing National Party. One National Party parliamentary candidate advocated manslaughter trials for any gay men found to be donating blood; others said they should be indicted for murder.
Leading fundamentalists said this never would have happened if (he nation had heeded their 1983 call for a quarantine on all gay men traveling to the United States. Gay rights groups reported numerous gang attacks on gay men, apparently inspired by the AIDS panic.
With clamor rising across the country, Prime Minister Hawke interrupted a campaign tour and called an emergency meeting of AIDS experts and state health ministers in Melbourne. The atmosphere was acrimonious. According to one report, the Queensland health minister refused to so much as walk into the room where an openly gay man was present. A number of committees and task forces were established, and the health ministers agreed to impose national guidelines to deal severely with people who misled blood bankers when filling out questionnaires about their status as possible members of high-risk groups. Hawke issued a national call for female donors.
Although Australia was the hotspot for AIDS hysteria in 1984, concern grew elsewhere as well. The World Health Organization reported a threefold increase of AIDS cases in western Europe during 1984, with 762 cases diagnosed in fourteen nations. About one-third of the cases were in France. The two nations with gay populations most prone to travel, Denmark and Switzerland, reported the highest per capita rates of AIDS on the continent.