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

by Randy Shilts

Nearly 20 percent of the money committed to fighting the AIDS epidemic for the entire United States, including all the science and epidemiology expenditures by the U.S. government, now was pledged by the city and county of San Francisco.

Gottlieb knew, and it would not be enough to even start decent research. He was losing time, and time meant losing lives. He wondered how many people would die before the government took the epidemic seriously. What was the threshold of death and suffering society could tolerate? He asked himself the same question later, after the gay man who had done the word processing for UCLA’s first request for an AIDS grant withered away and died of the disease.

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.

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.

the meeting that marked the first official attention the municipal government of New York City had lent to the epidemic.

Two distinct waves of the AIDS epidemic were sweeping Europe—the first dating back at least five years to Africa, and the second, more recent, among gay men who had contacts with American homosexuals, usually in New York City.

If anything marked the blood work of AIDS patients, Klatzmann said, it was the virtual absence of T-4 lymphocytes. The virus appeared so deadly that it killed its host cells, which might render fruitless a search for the virus in the blood. Given the fact that lymphadenopathy appeared to be some kind of early symptom of AIDS, it made more sense to try to find the culprit while it was still proliferating and not after it had delivered the coup de grace to so many T-4 cells. This line of inquiry turned out to be one of the most momentous in the scientific history of the AIDS epidemic.

A drop in gay donors would have a terrible effect on the region’s always-tenuous supply of blood. Between 5 and 9 percent of Irwin’s donors were gay, he told Dritz. “They are very good donors,” he sighed.

AIDS had always created some discomfort for Gallo, who hailed from traditional Italian-Catholic stock in New Jersey. There was all this dirty talk of 1,100 partners, fist-fucking, and other exotic sexuality; frankly, Gallo found it embarrassing to talk about. Besides, the lab research had been so damned frustrating.

Gallo’s lab had found evidence of reverse transcriptase in the infected lymphocytes of AIDS patients. This enzyme, in effect, had left the footprints of a retrovirus all over the lymphocytes. But it was impossible to find the damned retrovirus itself.

The frustration was galling and, by November, Gallo had made what would prove to be among the most important decisions of his career. He gave up.

Mayor Feinstein had decided to veto the law.

the veto underscored that the notion that homosexuals and their relationships should be granted such recognition was still repugnant to this society. Gay relationships were meant to be dirty secrets, and nothing more.

For all the acceptance gays had gained, homosexuality still was not accepted as equal in the city they called Mecca. A prevailing morality that viewed homosexuals as promiscuous hedonists incapable of deep, sustaining relationships ensured that it would be impossible for homosexuals to legitimize whatever relationships they could forge.

December 1982, at a time when gay people more than ever needed to be encouraged into relationships, they were told their partnerships were valueless by institutions that later scratched their heads and wondered why gays didn’t settle into couples when it was so clear their lives were at stake.

The scientific community was aware of the severe problems health agencies were having in securing adequate funding under the Reagan administration. Some blood bankers, including some officials of the FDA, remained unconvinced that AIDS even existed.

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.

Still, the shock at Mark Feldman’s diagnosis educated him as to how much he had seen AIDS as the problem of other people. Sure, he had worked on it as an issue and had repeatedly instructed Phil Burton that it was the top-priority gay issue, but Bill had never seen it as an issue for himself, except in some dark corner of his imagination.

gay men who had stopped getting inseminated by the end of 1982 tended to avoid infection with the AIDS virus; those who were infected tended to be those who carried on into 1983 and beyond.

New York City, where the virus apparently arrived first and was probably more widespread, a fierce debate had already consumed the gay community in the final weeks of 1982, precisely on the issue of promiscuity and AIDS.

The politically correct line, emerging from a handful of “AIDS activists,” maintained that talking about the gay community’s prodigious promiscuity was part of a “blame-the-victim mentality.”

Callen saw a fine line between blaming the victim and taking responsibility, and he thought it was time for some straight talk about the disease if gay men were to survive.

the GMHC board thought that issues like bathhouse closure presented profound civil rights questions. You might start by closing baths, but what would happen next? they asked.

Despite the cultural obsession with androgyny, homosexuality, and prejudice, 1982 marked the beginning of the time, commentators would later note, when America started feeling good about itself again.

Both MMWR reports gave greater weight to the idea that gay cancer wasn’t so gay anymore. Now AIDS became more newsworthy, particularly as the implications of transfusion AIDS sunk in. Because any chance accident might put one in need of a transfusion, just about everybody was now at risk for AIDS, it seemed.

Few could have imagined the impact the recall election would have on the lives, and deaths, of thousands of San Franciscans for years to come.

“There have been some incredibly special times during the past few months that leave me very, very rich: spots I could not have gotten to without the spots that are on my leg,” said Gary. “It seems amazing to me how rich this time can be, how much I’ve enjoyed touching that inner self. It’s like it’s never been touched before…. And all the hell you bear along the way, including this fucking disease, it all seems to be helping to get me to a spot where I can rest peacefully, whether it’s living or whether it’s dead. I want this spot, this connection with the beauty around me more than I’ve ever wanted a lover—because it is my lover. It’s what you can always carry with you, where you can understand everything….”

Francis’s second memo outlined the most crucial component of his long-range plan for AIDS. Even given the mysteries of the disease, the CDC knew enough about the syndrome to start large-scale campaigns to halt its spread now, particularly among gay men, who were well-educated and far more likely to heed government warnings than other risk groups such as intravenous drug users or Haitians.

What good were gay rights if they were all dead?

As he scanned the group, Michael Callen, a leader in the newly formed New York chapter of People With AIDS, relished the irony of the press conference. He knew that virtually every gay man there had had hepatitis B and that most had engaged in the kind of sexual activities that put them at high risk for AIDS. Not one of them could in good conscience donate blood, Callen thought, and here they were, exuding self-righteous indignation at the thought that someone would suggest they did not have the right to make such donations.

The PHS saw fit to offer only two sentences of guidance to gay men eager to avoid the strange new disease, despite reams of data collected in the still-unpublished case-control study. “Sexual contact should be avoided with persons known or suspected to have AIDS‚” the PHS wrote. “Members of high-risk groups should be aware that multiple sexual partners increase the probability of developing AIDS.” That statement represented the sum total of the U.S. government’s attempt to prevent the spread of acquired immune deficiency syndrome among gay men in March 1983, more than twenty months into the epidemic.

“If this article doesn’t scare the shit out of you we’re in real trouble. If this article doesn’t rouse you to anger, fury, rage and action, gay men may have no future on this earth. Our continued existence depends on just how angry you can get. … Unless we fight for our lives we shall die. In all the history of homosexuality we have never been so close to death and extinction before. Many of us are dying or dead already.” With those words, Larry Kramer threw a hand grenade into the foxhole of denial where most gay men in the United States had been sitting out the epidemic. The cover story of the New York Native, headlined “1,112 and Counting,” was Kramer’s end run around all the gay leaders and GMHC organizers worried about not panicking the homosexuals and not inciting homophobia. As far as Kramer was concerned, gay men needed a little panic and a lot of anger.

With his silence on AIDS, the mayor of New York is helping to kill us.”

“I am sick of guys who moan that giving up careless sex until this thing blows over is worse than death‚” Kramer wrote. “How can they value life so little and cocks and asses so much?”

Larry Kramer’s piece irrevocably altered the context in which AIDS was discussed in the gay community and, hence, in the nation.

Inarguably one of the most influential works of advocacy journalism of the decade, “1,112 and Counting…” swiftly crystallized the epidemic into a political movement for the gay community at the same time it set off a maelstrom of controversy that polarized gay leaders.

Questions focused largely on one issue: Did the doctors really know how AIDS was transmitted? Anal intercourse could be a major problem, the scientists said, given the hepatitis B model of transmission. The virus, obviously present in semen, could be injected directly into the bloodstream through fissures in the rectal lining. Nobody, however, seemed particularly enthralled with Conant’s suggestion that gay men start wearing condoms. The CDC case-control study had indicted promiscuity, a word quickly denounced by gay leaders as “judgmental,” but the doctors could offer little direct advice on which practices spread the

disease. Because of federal funding shortages, no subsequent epidemiological studies had been undertaken to investigate this issue, even though they were precisely the inquiries that could most directly have saved lives.

Conant had a sinking feeling as he walked down the mansion’s twisting, baronial staircase to leave. He had hoped the leaders would agree on a call to arms to fight the epidemic within the gay community. Instead, they seemed preoccupied with the politically correct thing to do. Conant feared that people were going to die because of it.

AIDS was rapidly becoming a disease of the poor and the non-whites in the sprawling ghettos bordering New York; 68 percent of New Jersey AIDS cases were black or Hispanic.

Willy Rozenbaum, however, was convinced. You don’t find a new human virus that often; it was beyond coincidence. And his priority was to save lives. He was tired of treating the various opportunistic infections associated with AIDS. It was like putting a brick in one bank of the dam only to know the other side would collapse in minutes. He wanted an anti-viral drug, maybe a substance that could interfere with the enzyme with which any retrovirus multiplied, reverse transcriptase. One afternoon,

The revelations about transfusion AIDS in late December had started it all. In the first three months of 1983, 169 stories about the epidemic had run in the nation’s major newspapers and newsmagazines, more than four times the number of the last three months of 1982.

Gallo focused on retroviruses and by the mid-1970s was among the scientists to characterize the enzyme reverse transcriptase,

In the process he discovered interleukin-2, a natural substance that stimulates T-cell multiplication.

This time he definitively showed that he had a retrovirus that caused leukemia. After publication of his findings in 1980, Gallo was a star again, receiving the coveted Albert Lasker Award.

This date, April 11, 1983, was later cited by the officials of the National Cancer Institute as the turning point, the time that the institute became firmly committed to finding the cause of Acquired Immune Deficiency Syndrome. It was precisely one year, ten months, and seven days after the MMWR had announced the first twenty-six cases of Kaposi’s sarcoma in gay men, as well as the eighteen other mysterious cases of Pneumocystis and other unexplained opportunistic infections.

Between the time of that announcement and the date of the NCI’s commitment to finding the cause of the disease, 1,295 Americans had contracted AIDS and 492 had died.

Then, there were the other, peskier requests. No, the city would not provide housing or hospice space for AIDS patients kicked out onto the street. That would be perceived as being “special treatment” for gays.

April 1983 that the momentum of movement on the AIDS epidemic shifted from New York City to San Francisco, typified, as much as anything else, by that meeting in New York City Hall. For

The shift was ironic, considering that New York City was the epicenter for the epidemic, both biologically and, at first, psychologically. Because of the extraordinary reporting of the New York Native, the city’s gay community had been exposed to far more information about AIDS than San Francisco’s in 1981 and 1982. All the ingredients for a successful battle against the epidemic existed in New York City, except for one: leadership. In San Francisco, the plethora of gay leaders created an environment in which questions of AIDS policy were debated, albeit brutally.