Nadav Spiegelman

And the Band Played On

Author
Randy Shilts
My last highlight
2021-09-02
Number of highlights
93

My Highlights

“You’re just like a little kid,” concluded Bill after they made love. “What other way is there to be?” Kico asked. Kico
Joe figured that the attraction to promiscuity and depersonalization of sex rested on issues surrounding a fear of intimacy. Joe knew these were not gay issues but male issues.
Haverkos wanted to fly to Paris immediately to pick up some virus that he could take back to Atlanta to study. However, because of CDC funding shortages, Haverkos couldn’t add the side trip to his itinerary. The Pasteur Institute had to mail the virus to CDC, in test tubes packed in dry ice. By the time the samples arrived in Atlanta, however, the virus had died, requiring the institute to ship the virus again and delaying CDC tests on LAV for months.
This was when Rubinstein learned what gay leaders had known for two years: New York City’s government had every intention of getting through the epidemic spending the least amount of money that was politically possible.
New York City’s reaction toward the epidemic was marked by the utter absence of any policy at all. Both state and city officials minimized the importance of the epidemic, thereby justifying their inaction. In late June, City Health Commissioner Dr. David Sencer had reported a “leveling off of cases” and proposed that gay men might be “getting immune” to the disease and that AIDS was perhaps “not as infectious as we may have thought.” The chairman of the city’s Human Rights Commission, Isaiah Robinson, flatly told the Daily News, “There is no epidemic.” His calculations stemmed from the fact that 1,600 AIDS cases in a nation of 200 million meant only 1 in 100,000 Americans had contracted the disease. “One ten-thousandth of one percent is not an epidemic,” he said. In Albany, Governor Mario Cuomo was proof that official disinterest in AIDS knew no party lines. On fiscal grounds, the liberal Democrat had taken a strong stand against the Republican-dominated state senate’s push to appropriate $4.5 million for AIDS research and $700,000 for education and prevention programs. The state senate voted unanimously to allocate the funds, but Cuomo threatened a veto. “It’s a very good bill if you have the $5 million,” Cuomo said. “I don’t have the $5 million.” Before a legislative investigations committee on the epidemic, Cuomo’s state Health Commissioner David Axelrod dismissed criticism by saying hypertension was a more important state health issue in New York.
“Okay, Mathilde, I’ll make you the head of my task force on AIDS,” he said. Krim left the office feeling she had accomplished something, at last. She never heard from Mayor Koch again.
In San Francisco, Dr. Selma Dritz announced that AIDS was now the leading cause of death among single men in their thirties and forties.
It was true of the AIDS epidemic that whenever a new discovery occurred, marking a moment things might turn more hopeful or more dark, the new turn almost always was dark, and far darker than anyone suspected.
“I want to assure the American people that the blood supply is 100 percent safe,” said Secretary Heckler in early July, when she went to the Washington, D.C., Red Cross office to donate blood.
As was so often the case, the media became an integral part of the story. Seeing themselves as the bastions of common sense, science writers and reporters covering the epidemic also wrote curb-the-panic stories and avoided asking the blood bankers tough questions.
During the first six months of 1983, there were as many new AIDS cases as had been reported in all of 1981 and 1982 combined.
According to figures released by the Centers for Disease Control on May 2, 1983, the day of the candlelight march, the number of new AIDS diagnoses in the United States had increased by 36 percent to 1,366 cases. About 38 percent of them, or 520, already were dead. This mortality rate belied the true prospective of death from AIDS. At least 75 percent of those who had the disease for two years were dead. Nearly half of the AIDS casualties were men between the ages of 30 and 39. Another 22 percent were men in their twenties.
About 44 percent of the country’s AIDS patients lived in New York City, largely in Manhattan.
Pencils dropped and jaws gaped throughout the auditorium as Lawrence calmly laid out his projection that the mean incubation period for the AIDS virus was 5.5 years. Some people, he added, would not get AIDS until 14 years after their infection. These figures meant that the typical person diagnosed with AIDS in April 1985 was infected in October 1979. The huge number of people infected with the virus in 1982, 1983, and 1984, when the virus was far more prevalent, would not show AIDS symptoms until the late 1980s.
Bathhouses guaranteed the rapid spread of AIDS among gay men. To be sure, the disease would have crept through the United States without bathhouses, but these foci of sexual activity fueled the brushfire propagation of the infection more than any other single element of American society.
Dr. Dritz, the infectious disease specialist for the San Francisco Department of Public Health, had
“During the wars with Napoleon, when Admiral Nelson asked for the numbers of men killed and wounded in a week of action, he said, ‘Let me have the butcher’s bill for the week,’” Dritz sighed to a reporter one day. “As I make out these reports with the new numbers of AIDS cases each week, and as I check them off when they die, I feel like I am writing the butcher’s bill of this epidemic.”
By the end of 1983, the entire contribution the government of New York City had made to AIDS services or education was a $24,500 allocation to the Red Cross to provide home attendant care to AIDS patients.
Newspapers like The New York Times and Washington Post solemnly insisted that they did not discriminate against an employee on the basis of sexual orientation. In practice, however, such papers never hired employees who would openly say they were gay, and homosexual reporters at such papers privately maintained that their careers would be stalled if not destroyed once their sexuality became known. Gays were tolerated as drama critics and food reviewers, but the hard-news sections of the paper had a difficult time acclimating to women as reporters, much less inverts.
Morrison announced the new 5B policy: that all patients designate their significant others who would have visiting privileges. As far as Morrison was concerned, the definition of the American family had changed. It should be the right of patients themselves to define their families, not the right of the hospital.
Probably the most startling revelation was the continued absence of any coordinated plan for attacking AIDS, even at this time in late 1983. After months of pressure, the Department of Health and Human Services had submitted a six-page document to the subcommittee in late October. The congressional report, however, had little praise for this effort. “The so-called ‘operational plan’ is, on its face, a document created for the subcommittee, and serves only to highlight the lack of comprehensive planning and budgeting by the PHS in response to AIDS,” the report said. “It provides no specific information about future research and surveillance plans. It barely mentions, if at all, HHS strategy, timetables, contingency plans, and vehicles for evaluating the Government’s activity. Essentially, the plan submitted by HHS is an abbreviated fact sheet about past activities, rather than a program for dealing with the Nation’s ‘number-one health priority.’”
The strategy of both state and city health officials continued to minimize the severity of the AIDS problem, lending credence to their contention that they were doing enough to fight it. Both the state health commissioner, Dr. David Axelrod, and the city health commissioner, Dr. David Sencer, had cheerfully announced that AIDS diagnoses were decreasing in New York in the last months of 1983. The analyses were based on the fact that rather than doubling, as cases had been for two years, the rate of increase had gone down by 30 percent.
The closeted homosexual is far less likely to demand fair or just treatment for his kind, because to do so would call attention to himself.
So far, sixteen hemophiliacs were suffering from AIDS. In just two years, the disease had emerged as the leading cause of death among hemophiliacs in the United States, even surpassing uncontrolled bleeding.
Bathhouse owners, some of whom had spent much of the last decade barring racial minorities from their businesses, themselves had become new champions of civil liberties.
That afternoon, Rock Hudson took a call from an old Hollywood friend. “President Reagan wished him well and let him know that he and Mrs. Reagan were keeping him in their thoughts and prayers,” said a White House spokesperson.
In New York, Dr. Mathilde Krim, besieged with interview requests, was privately disgusted that President Reagan was shedding “crocodile tears” over Hudson. Where was his concern for the thousands of others who had been dying all these years? she wondered.
As far as Kramer was concerned, AIDS was not the wrath of God but the wrath of heterosexuals. Heterosexuals had decreed that gays could not legally marry or even live together in any semblance of openness without risking ignominy. The gay movement, in Kramer’s view, had colluded with straights by becoming a cause of sexual liberation, rather than human liberation.
Doctors involved in AIDS research called the Hudson announcement the single most important event in the history of the epidemic, and few knowledgeable people argued.
To Francis, the Hudson episode was not a celebration of one man’s courage but an indictment of our era. A lot of good, decent Americans had perished in this epidemic, but it was the diagnosis of one movie star, who had demonstrated no previous inclination to disclose his plight, that was going to make all the difference.
In the broader historical sense, Koop’s role in the epidemic was a bit more ambiguous. After all, the surgeon general had managed to maintain a complete silence on the epidemic for over five years. By the time he spoke out, 27,000 Americans already were dead or dying of the disease; Koop’s interest was historic for its impact, not its timeliness. There was no denying, however, that the report proved a watershed event in the history of the epidemic, and conservatives were stunned.
The United States government, which had so brazenly transformed Gallo’s work into political capital for the Reagan administration, tenaciously held on to the myth that Gallo had discovered the AIDS virus. This meant adhering to Gallo’s notion that the virus was a relative of the HTLV family that Gallo also had discovered, and that he had the right to name the virus, as viral discoverers always do. Ultimately, it had, taken an international committee to rule that, no, this was not a leukemia virus and, no, Dr. Gallo did not have the right to name it.
Already, some said that Ronald Reagan would be remembered in history books for one thing beyond all else: He was the man who had let AIDS rage through America, the leader of the government that when challenged to action had placed politics above the health of the American people.
As Larry listened, he became aware the president’s speech made no mention of the word “gay.” There was talk about hemophiliacs who got AIDS, transfusion recipients, and the spouses of intravenous drug abusers, but the G-word was never spoken. And then Reagan turned to the nitty-gritty of testing. Larry’s temper began to rise. There was something so utterly dishonest about discussing almost every aspect of the AIDS epidemic in this address and not mentioning the fact that it was homosexuals who had been killed and homosexuals who had, in fact, done so much of the work in fighting the epidemic for all those years that Reagan had ignored it.
By the time President Reagan had delivered his first speech on the epidemic of Acquired Immune Deficiency Syndrome, 36,058 Americans had been diagnosed with the disease; 20,849 had died.
An estimated 12,000 Americans were infected from transfusions largely administered after the CDC had futilely begged the blood industry for action to prevent spread of the disease. “How many people have to die?” Francis had asked the blood bankers in early 1983. The answer was now clear: thousands would.
The numbers of AIDS cases measured the shame of the nation, he believed. The United States, the one nation with the knowledge, the resources, and the institutions to respond to the epidemic, had failed. And it had failed because of ignorance and fear, prejudice and rejection. The story of the AIDS epidemic was that simple, Cleve felt; it was a story of bigotry and what it could do to a nation. The
“Who is the president?” a doctor asked, trying to judge Bill’s presence of mind. “Kennedy,” Bill said. The doctor looked worried. “I think it’s Reagan,” he said. “Please, don’t remind me!” Bill groaned. “I’m sick enough already. Don’t make it any worse.”
Silverman, the director of the Department of Public Health,
They didn’t teach these things when Selma was in medical school in the 1940s, but she quickly learned the down-and-dirty realities about enteric diseases. Gay doctors had long recognized that parasitic diseases like amebiasis, giardiasis, and shigellosis were simply a health hazard of being gay.
Dr. Michael Lange peered into Nick’s room at St. Luke’s-Roosevelt Hospital. A neurologist had found three massive lesions on the young man’s brain during a CAT scan. Lange had been called in as an infectious disease specialist.
None of the CDC doctors he talked to, however, seemed particularly interested in his story.
On Friday June 5, 1981, the Centers for Disease Control Morbidity and Mortality Weekly Report published what would be the first report on the epidemic, based on the Los Angeles cases of Pneumocystis that Drs. Michael Gottlieb and Joel Weisman had seen in the previous months.
Dr. Paul Weisner, chief of the CDC’s sexually transmitted disease section,
The NCI conference fueled Gottlieb’s suspicion that no one cared because it was homosexuals who were dying. Nobody came out and said it was all right for gays to drop dead; it was just that homosexuals didn’t seem to warrant the kind of urgent concern another set of victims would engender.
How very American, he thought, to look at a disease as homosexual or heterosexual, as if viruses had the intelligence to choose between different inclinations of human behavior.
Dr. Arye Rubinstein’s soft voice was infused with a thick Israeli accent that the poor black kids from the Bronx, who made up the bulk of his patients in the immunology ward, found both exotic and reassuring.
In the meeting at Larry Kramer’s apartment, everybody agreed that Paul Popham would be the ideal president of the new organization, Gay Men’s Health Crisis, which was geared to raising money for gay cancer research.
The gay plague got covered only because it finally had struck people who counted, people who were not homosexuals.
The connections between Gaetan and both Michael Maletta, who was one of the first Kaposi’s sarcoma patients in San Francisco, and Nick, one of the nation’s first toxoplasmosis victims, were tantalizing. Nick, Enno, and Michael, it turned out, had all run with the same crowd back in the 1970s. In fact, a whole cluster of the nation’s earliest cases appeared to have lived within doors of each other, south of Washington Square in the West Village.
The Reagan budget men wanted to slice 1,000 grants from the National Institutes of Health and reduce positions on the Epidemiological Intelligence Service. The $5 million increase in the CDC budget barely covered inflation and gave the agency no new funds to deal with the new epidemic.
From just one tryst with Gaetan, therefore, eleven GRID cases could be connected. Altogether, Gaetan could be connected to nine of the first nineteen cases of GRID in Los Angeles, twenty-two in New York City, and nine patients in eight other North American cities. The Los Angeles Cluster Study, as it became known, offered powerful evidence that GRID not only was transmissible but was the work of a single infectious agent.
At least 40 of the first 248 gay men diagnosed with GRID in the United States, as of April 12, 1982, either had had sex with Gaetan Dugas or had had sex with someone who had.
People were suffering and the city wouldn’t do anything about it. Half the GRID cases in the country were in New York City, and you barely heard a whisper about it from the mayor or the health officials. Gays were going to have to establish their own services or be left to die in shame, fear, and isolation.
As managing editor of the “CBS Nightly News,” Rather passed the news judgment that made AIDS a disease that one rarely heard anything about. Three years later, television commentators would still be talking about AIDS as that disease you rarely heard anything about, as if they were helpless bystanders and not the very people who themselves had decreed the silence in the public media.
Most of the research that would come from the federal government in the next two years was financed by these bills and prodded through Congress by these two men, who in turn were sparked into action by two of the only openly gay congressional aides on Capitol Hill, Yale Law School graduate Tim Westmoreland and one-time street radical Bill Kraus. No matter what would be said about how the gay community reacted to the epidemic, it is clear that virtually all the money that funded the early scientific advances on AIDS can be credited almost solely to these two gay men.
Always eager to use an angle that did not involve perverts or addicts, Newsweek ran a brief story keyed to the two-month-old hemophiliac announcement: “Homosexual Plague Strikes New Victims.” It was important to let people know that AIDS was hitting people who mattered, so the story’s second sentence reported that “the ‘homosexual plague’ has started spilling over into the general population.”
Press-release journalism, out of vogue since the advent of Watergate-style investigative reporting, made a dashing comeback with the AIDS epidemic. The second tendency evident in AIDS journalism was the compulsion to lend a reassuring last note to otherwise bleak stories.
The joke among gay congressional staffers was that NIH stood for Not Interested in Homosexuals. Senator
In New York City, where half the nation’s AIDS cases resided, The New York Times had written only three stories about the epidemic in 1981 and three more stories in all of 1982. None made the front page. Indeed, one could have lived in New York, or in most of the United States for that matter, and not even have been aware from the daily newspapers that an epidemic was happening, even while government doctors themselves were predicting that the scourge would wipe out the lives of tens of thousands.
Often, neurological problems were the only early symptoms of AIDS, scientists had reported at a meeting of the American Neurological Association. Upon closer examination, three in four AIDS sufferers showed evidence of some brain damage.
There was a doctor from New York University who had written an extensive study on the apparent infection of the central nervous system, but he refused to tell the reporter from the American Medical Association journal about his work because he had submitted his paper to a neurological journal, where it had been accepted for publication. The neurological journal might throw out the story if he publicly discussed his findings with the press, and that would hurt the doctor’s career in the publish-or-perish world of academic medicine. It was science as usual, and the Journal of the American Medical Association would just have to wait until the research was published in six months.
the reporting that did exist had already set a pattern for how the disease would be reported: The focus was on the men in the white coats, who were sure to speak innocuously. The stories were carefully written not to inspire panic, which might inflame homophobes, or dwell too much on the seamier sex histories of the gay victims, which might hurt the sensitivities of homosexuals. The pieces always ended on a note of optimism—a breakthrough or vaccine was just around the corner. Most importantly, the epidemic was only news when it was not killing homosexuals. In this sense, AIDS remained a fundamentally gay disease, newsworthy only by virtue of the fact that it sometimes hit people who weren’t gay, exceptions that tended to prove the rule.
The Centers for Disease Control was behaving in an entirely reactive mode,
Even as Governor Cuomo assured gay leaders he would never move against the bathhouses, he opposed—for the second year in a row—allocating state funds to fight AIDS.
At the University of California in San Francisco, administrators mentioned to one of the nation’s foremost researchers that they wanted less publicity about AIDS. UC officials worried that top interns were choosing to go to other medical centers because the UCSF teaching hospital was San Francisco General, the nation’s premier AIDS facility. The best medical school graduates, they feared, would not want to perform internships at a hospital if all they would see was one kind of patient.
An unmarried man over the age of fifteen in New York City now stood a higher chance of dying of AIDS than of heart disease, which is traditionally the greatest killer of men, Curran said. In San Francisco, a single man was five times more likely to die of AIDS than of a heart attack. It was now clear that the CDC had vastly underestimated the scope of the epidemic, he added.
Negotiations among Robert Gallo from the National Cancer Institute, Don Francis from the Centers for Disease Control, and Jean-Claude Chermann from the Pasteur Institute quickly acquired the mood of delicate arms negotiations among parties who shared only mutual distrust. Gallo flatly refused to discuss the details of his upcoming publications on HTLV-III in front of Francis, so a game of musical chairs enveloped the meetings. Francis frequently had to leave the room while Gallo and Chermann conferred privately. The Pasteur scientists were astonished that one branch of the U.S. government should hold another in such low regard.
The retrospective testing bolstered the hypothesis that a new viral agent had appeared among San Francisco gay men in 1976 or 1977 and spread rapidly through the city well before Ken Home first saw the purple lesions on his chest in 1980.
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.
Ed Brandt denied leaking a photocopy of his May 25 memorandum to Secretary Heckler seeking $55 million in new AIDS funds.
Certainly, the surfacing of Dr. Brandt’s twenty-two-page memo proved the watershed event in the AIDS budget battle of 1984.
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.”
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.
The threat of noncooperation was the only leverage gays had in the debate.
AIDS was a topic of much discussion at the Republican Convention, although all of it was off the convention floor. At a party barbecue held at the estate of a millionaire Republican businessman, a fundamentalist minister delivered an invocation that included a reference to the fact that God was using AIDS to mete punishment to the immoral. At a breakfast for Republican business executives a day later, the president of American Airlines opened his talk by telling guests that the word “gay” stood for “got AIDS yet?” To highlight the link between the party of Lincoln and growing fundamentalist political clout, Republican leaders recruited Jerry Falwell to deliver the benediction for the session in which President Reagan was renominated.
“I caught some flu bug when I was filming in Israel,” Hudson assured his friend, Nancy Reagan. “I’m feeling fine now.”
“I wish I didn’t have to get sick before I saw how many people really like me,” Bill observed.
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.
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.
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.
The crisis in New York AIDS treatment characterized the new phase the AIDS epidemic was entering. The unheeded warnings of 1983 and the lost opportunities of 1984 were materializing into the tragic stories of 1985.
In New York City, for example, there was only one laboratory capable of performing the LAV viral isolations. The lack of such laboratories was a legacy of the cutbacks of the first years of the Reagan administration. In the early 1980s, when retrovirology grants dried up, scientists simply stopped learning how to be retrovirologists. There wasn’t any future in it.
The family soon fell into the same confusion that gay men had faced about their own vulnerability to the syndrome. The doctors told them to take precautions, not to use the same dishes as Frances and to wear gloves when they washed her dishes and laundry.
Even the most cynical critics of the Reagan administration were staggered when the Office of Management and Budget released its proposed AIDS budget for the 1986 fiscal year. Not only had the administration not increased AIDS funding but the budget called for reducing AIDS spending from the current level of $96 million to $85.5 million in the next fiscal year.
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.
To most heterosexuals, the rhetoric sounded implausible to the point of absurdity, but most heterosexuals remained uninformed as to the lasting legacy that prejudice imprints on an oppressed people. Humans who have been subjected to a lifetime of irrational bigotry on the part of a mainstream society can be excused for harboring unreasonable fears. The general apathy that the United States had demonstrated toward the AIDS epidemic had only deepened the distrust between gays and heterosexuals. Gays could understandably suspect the intentions of a federal government that had spent the past four years doing as little as possible to thwart the epidemic.
In her only departure from her prepared text, Heckler added, “We must conquer AIDS before it affects the heterosexual population and the general population…. We have a very strong public interest in stopping AIDS before it spreads outside the risk groups, before it becomes an overwhelming problem.”
many gay leaders wondered who had determined that homosexuals were not part of the “general population” that so concerned the Secretary.
It was four years, one month, and twenty-five days since Gottlieb’s first report on the five unexplained cases of Pneumocystis carinii pneumonia had appeared in the Morbidity and Mortality Weekly Report. Since then, he had treated 200 AIDS patients, most of whom were dead by now. Gottlieb felt numbed with grief and weariness. After all his years of warnings and pleas, he was aggravated that it had taken this, the diagnosis of a movie star, to awaken the nation. He was troubled by what this said about America and the nation’s much-vaunted regard for the sanctity of human life. Nevertheless, Gottlieb could see that Rock Hudson’s diagnosis had irrevocably changed everything for the AIDS epidemic. After such a burst of attention, AIDS would never again be relegated to the obscurity to which it had long been assigned.
It was commonly accepted now, among the people who had understood the threat for many years, that there were two clear phases to the disease in the United States: there was AIDS before Rock Hudson and AIDS after. The fact that a movie star’s diagnosis could make such a huge difference was itself a tribute to the power the news media exerted in the latter portion of the twentieth century.
Ultimately, it was a report issued in October 1986 that turned the tale, galvanized the media and allowed AIDS to achieve the critical mass to make it a pivotal social issue in 1987.
If preventing disease in a community was best done by the community itself, why bother to have a public health department?