And the Band Played On: Politics, People, and the AIDS Epidemic

by Randy Shilts

Six months later, when a jury decided that Dan White should go to jail for only six years for killing the two men, Cleve had organized another march to City Hall—the one that turned into a riot, a vivid affirmation that this generation of gay people weren’t a bunch of sissies to be kicked around without a fight. This White Night Riot left dozens of policemen injured and the front of City Hall ravaged; gay leaders across the country grimaced at the televised coverage of police cars set aflame by rampaging gay crowds.

He could understand that to a gay refugee from Des Moines, the city represented freedom beyond anything imaginable. He also knew, however, that freedom to go to a gay bar was not real freedom.

The gay liberation movement of the 1970s had spawned a business of bathhouses and sex clubs. The hundreds of such institutions were a $100-million industry across America and Canada, and bathhouse owners were frequently gay political leaders as well, helping support the usually financially starved gay groups.

All that people seemed to talk about were the latest intestinal parasites going around. Dinner conversation often evolved into guys swapping stories about which medications stomped out the stubborn little creatures and whether Flagyl, the preferred antiparasite drug, was really carcinogenic. It was like eavesdropping on a bunch of old ladies sharing arthritis stories on shaded benches in Miami.

“The problem lies not in evil personalities or traitorous acts, but rather in the political orientation which believes that an oppressed group gets what it needs by being careful not to offend the powerful,” Bill reported to the Milk Club after the platform compromise. “The problem lies in the desire to protect the little that we have gotten by not risking a fight for what we deserve. The problem lies in believing that what we have gotten is somehow a favor given by politicians rather than the politicians’ recognition of what we have the political power to demand and to get.”

It would always be the unwritten policy of health bureaucrats throughout the epidemic that, when in doubt, don’t scare the horses.

What they had to offer, they figured, was a perspective unencumbered by America’s preoccupation with divining who was homosexual and who wasn’t. American scientists thought it odd to view the new epidemic as an African disease, but the French thought it unusual to view it as a homosexual disease.

A typical GRID case had sex with 1,100 men in his lifetime; a few counted as many as 20,000 sexual contacts.

“Legionnaire’s disease hit a group of predominantly white, heterosexual, middle-aged members of the American Legion. The respectability of the victims brought them a degree of attention and funding for research and treatment far greater than that made available so far to the victims of Kaposi’s sarcoma. “I want to emphasize the contrast, because the more popular Legionnaire’s disease affected fewer people and proved less likely to be fatal. What society judged was not the severity of the disease but the social acceptability of the individuals affected with it….

The logical science of GRID demanded that logical steps be taken, the CDC thought, or people would die needlessly. However, as would be the case with just about every policy aspect of the epidemic, logic would not be the prevailing modus operandi.

Now, as he was about to start what he felt would be promising research into the cause of AIDS, his efforts were arrested because he did not have $1,500 for a filter.

Levy got his money nonetheless. One call from the assembly speaker to the chancellor took care of that. But the money came six months after he had requested it, in January 1983. Levy could have spent those six months looking for the AIDS virus. Indeed, when his lab became one of three institutions in the world to isolate the cause of the syndrome, it was obvious that the $1,500 was well spent. It was also obvious, Levy subsequently noted, that it could have happened much faster.

The inflated staffing figures, while altogether fictitious, reflected two salient problems that haunted the journalism of AIDS for years. First, reporters were willing to believe any story handed to them in a press release without the slightest inclination to discover whether the reported facts were true. 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.

Within days of the discovery of what proved to be the only cyanide-laced capsules, the Food and Drug Administration issued orders removing the drug from store shelves across the country. Federal, state, and local authorities were immediately on hand to coordinate efforts in states thousands of miles from where the tampered boxes appeared. No action was too extreme and no expense too great, they insisted, to save lives.

In the end, the millions of dollars for CDC Tylenol investigations yielded little beyond the probability that some lone crackpot had tampered with a few boxes of the pain reliever. No more cases of poisoning occurred beyond the first handful reported in early October. Yet the crisis showed how the government could spring into action, issue warnings, change regulations, and spend money, lots of money, when they thought the lives of Americans were at stake.

Altogether, seven people died from the cyanide-laced capsules; one other man in Yuba City, California, got sick, but it turned out he was faking it so he could collect damages from Johnson & Johnson. By comparison, 634 Americans had been stricken with AIDS by October 5, 1982. Of these, 260 were dead. There was no rush to spend money, mobilize public health officials, or issue regulations that might save lives.

Even before the meeting opened, however, it was clear that each group had come with its own agenda, and on most lists, stopping the potential spread of AIDS was secondary. Blood bankers were openly skeptical of the CDC claim that AIDS could be transmitted through blood. Some FDA officials remained unconvinced that AIDS even existed. Gay groups already had condemned any call for screening of blood donors as “scapegoating” homosexuals. The San Francisco Coordinating Committee of Gay and Lesbian Services, chaired by Pat Norman, issued a policy paper asserting that donor screening was “reminiscent of miscegenation blood laws that divided black blood from white” and “similar in concept to the World War II rounding up of Japanese-Americans in the western half of the country to minimize the possibility of espionage.”

The hepatitis testing would end up marking gay men with a “biological pink triangle,” said Dr. Herb Perkins, alluding to the emblems gays wore in Hitler’s death camps. “If 95 percent of gay men are antibody core positive, do we want them marked to exclude all blood with this marker?” he asked.

As gay leaders gathered for their weekly meeting with Feinstein that afternoon, she chided, “Well, you’ve had your revenge.” Even some of Feinstein’s longtime supporters chortled, enjoying the fact that they truly had exacted some retribution for the domestic partners’ veto.

“To some extent the insurance industry exists to discriminate among risks and to pool or avoid them,” he wrote. For this, other gays denounced Westmoreland as an alarmist.

The holistic healers had promised that the amino acid and DMSO treatments would cure Gary Walsh. They had cured AIDS patients before, they assured him. Moreover, the medical establishment knew the treatments were effective; that was the very reason they were illegal in the United States, they said. Doctors would go out of business if they let people get about the business of really curing disease.

“What’s more, I sense that your experiences have failed in making you bigger men. The letter reveals a reverse trend, a trend toward peevishness. What a time in your lives to be without honor.

In a way, the television cameras and print journeymen had come to need events such as the candlelight march as much as the marchers needed the reporters. Much of modern news is shamelessly artificial, coming from press conferences hyped by press releases written by legions of public relations people; the march lent an authenticity to the epidemic, even if it truly was designed to generate media coverage.

The CDC had yet to do a complete study on which sexual behaviors were responsible for spreading AIDS and which weren’t. At one point, Don Francis ordered a basic textbook on retroviruses, only to have the requisition refused. The CDC could not afford even $150 for a textbook.

Secretary Margaret Heckler had set the tone for testimony when she told Congress that “I don’t think there is another dollar that would make a difference because the attempt is all out to find an answer.” That was the policy of the Department of Health and Human Services and of these health officials.

To Rubinstein, the mode of transmission was fairly obvious and fit quite well with existing epidemiological data on AIDS. The mother obviously infected the child in her womb. The fetus and parent shared blood as surely as an intravenous drug user, hemophiliac, or blood transfusion recipient. The fact that none of the infants in Oleske’s study were over one year old reinforced this notion. In order to interpret this data to mean that “routine household contact” might spread AIDS, an entirely new paradigm for AIDS transmission was needed. Rubinstein’s paper explained it all very easily, though the Journal of the American Medical Association seemed more enamored with Oleske’s specious analysis.

the journal at first returned Rubinstein’s paper with the section on intrauterine transmission crossed out.

Fauci quickly cast blame on a hysterical media for taking his comments “out of context.” After all, he had said only that the possibility of household transmission might raise all these scientific implications. The lay public did not understand the language of science, he pleaded. Science always dealt with hypothetical; this did not mean he was saying that AIDS actually was spread through household contact.

the report created a lasting impression on the public that would raise the hysteria level around AIDS for years to come. Scientists just aren’t sure how AIDS is spread, the thinking went. Because of the long incubation period, possible transmission routes existed that might not reveal themselves until later—until it was too late. Anthony Fauci had said as much in his ill-considered editorial. Indeed, transmission routes may have seemed mysterious in 1982, but by 1983 the mysteries were solved. All the ways to get AIDS were established by then, and scientists, at least at the CDC, understood precisely how AIDS was spread.

By the next Friday, face masks, rubber gloves, and ten-minute education tapes on AIDS were being passed out in every firehouse and police station in the city. The photo of an officer trying on one of the resuscitation masks started cropping up in dailies and newsmagazines across the country in the fearful weeks that followed, a virtual emblem of the AIDS hysteria that enveloped the nation because of the household contact “findings.” The second epidemic had commenced—the epidemic of fear.

prisoners at a New York State prison in Auburn started a hunger strike because the cafeteria’s eating utensils had been used by an inmate who had died of AIDS a week earlier.

In the first official report on the spread of Acquired Immune Deficiency Syndrome to the United Kingdom, London health authorities reported that three Englishmen had died of AIDS as of mid-March and six more cases were being monitored nationwide. The report, combined with troubling news from the United States about the epidemic being spread in households, sparked a wave of AIDS panic in the always-hysterical British press. Health authorities began to debate whether to ban the import of American plasma, which made up half of the blood products used in Britain.

The linguistic roots of AIDSpeak sprouted not so much from the truth as from what was politically facile and psychologically reassuring. Semantics was the major denominator of AIDSpeak jargon, because the language went to great lengths never to offend.

Most importantly, however, the new syntax allowed gay political leaders to address and largely determine public health policy in the coming years, because public health officials quickly mastered AIDSpeak, and it was fundamentally a political tongue. With politicians talking like public health officials, and public health officials behaving like politicians, the new vernacular allowed virtually everyone to avoid challenging the encroaching epidemic in medical terms.

They had taken the mystery out of the mystery disease but nobody was going to believe them.

“Scientists don’t really know …” In gay AIDSpeak, that meant that scientists couldn’t prove AIDS was spread by sex, so people shouldn’t take measures to protect themselves. When those same words were spoken with a heterosexual accent, however, they meant that scientists couldn’t prove that AIDS was not spread by casual contagion, therefore people should take any measure possible to protect themselves and society. Both dialects were rooted in the same language of paranoia, one political and the other medical, although they implied drastically different solutions.

When a Department of Corrections official told guards that they had nothing to fear from AIDS patients as food handlers, the president of the Correction Officers Benevolent Association said he would buy a steak and lobster dinner for the entire Department of Corrections executive staff if the food could be prepared and served by AIDS patients.

San Francisco was suffering a simultaneous case of the AIDS jitters. The day after the Post’s classic grandmother headline, two AIDS sufferers were scheduled to be part of an “A.M. San Francisco” segment whose goal was to “demystify” AIDS and calm the fears. However, the two patients couldn’t appear on the show because studio technicians refused to mike them. Then, cameramen said they would not shoot the show if they had to walk onto the same sound stage as the two gay men. The two patients instead talked through a telephone in a separate room; only their disembodied voices appeared in the “demystification” show.

The epidemic gave new fuel to old prejudices.

When the newspapers weren’t writing stories about AIDS hysteria, they were touting cures and breakthroughs. It seemed every edition of each daily paper in the country that year could not go to bed without some doctor somewhere announcing something that “was a first step in the long road to a cure/vaccine for AIDS.”

“It’s hard to explain to people outside the system,” he said. “It’s two different things to work within the system for a goal and talking to the people outside the system for that goal,” he said. “Should I have answered: ‘I’ve been trying to get a statistician but can’t?’ I knew the assistant secretary was working on budget proposals to get that. It was not time to stand up in San Francisco and announce it. Listen, you have three options: you can exit in frustration; maybe you can take a second option, exit and then become an outside voice; or you can be loyal and work on the inside. People on the outside might think you’re lying or covering up. That’s not true.”

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.

On the whole, men are more good than bad; that, however, isn’t the real point, but they are more or less ignorant, and it is this that we call vice or virtue; the most incorrigible vice being that of an ignorance that fancies it knows everything and therefore claims for itself the right to kill. The soul of the murderer is blind; and there can be no true goodness nor true love without the utmost clear-sightedness. —ALBERT CAMUS, The Plague

The Medical Journal of Australia commented, “Perhaps we’ve needed a situation like this to show us what we have known all along—depravity kills.”

In July 1983, one donor imparted his “gift of life” at a bloodmobile visiting his work site. The blood, however, was discarded after Stanford tests measured the ratio of T-helper to T-suppressor lymphocytes to be .29 to 1, far below the average ratio of 2 to 1. The ratio was either the result of a botched test or severe immune problems. As was routine, the blood bank asked the donor, a thirty-nine-year-old male, to return to the blood bank for a battery of follow-up tests. The man made the appointments but never showed up. Eight months later he was diagnosed with Kaposi’s sarcoma. By that time, he had donated blood at all the major Bay Area blood banks, including the two largest, Irwin Memorial Blood Bank in San Francisco and the San Jose Red Cross. In fact, between 1981 and 1984, the man had donated blood thirteen times in Bay Area blood banks.

Only at Stanford, where blood was tested, was this man’s blood discarded; eleven recipients of blood transfusions provided by other blood centers were not so fortunate.

To the more socially conscious CDC staffers, the NCI was a repository for researchers concerned with little more than personal glory. For their part, the NCI scientists tended to view the CDC researchers as naive do-gooders who needed to move over for the “big boys” when a serious crisis evolved.

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. One in six of all the nation’s AIDS cases had been reported in just the past six weeks. The rapid increases in AIDS cases, however, revealed no new trends among victims. AIDS was not breaking new ground in the United States; instead, it was on its way to wiping out the people who had been identified for more than a year as the high-risk groups.

Reporters were routinely given bloated numbers about how many CDC researchers were working on AIDS, but in truth, the AIDS disease detectives numbered only between twenty-five and thirty, and they were nearly always behind in their work.

In an instant, his fury turned to ice. He knew exactly how the Nazis could kill for eight years without anyone doing anything. Nobody cared. That was what was happening with AIDS. People were dying, and nobody cared. As the anger rose again in Larry, he knew what he would do. That night, he jumped a plane to Boston. He quickly made his way to Cape Cod and spent his first night in the States at the Hyannisport Holiday Inn. Within a few days, everything fell into place. He found a cottage on the water and sat down to write a play that would force people to care.