And the Band Played On

by Randy Shilts

  While this drama unfolded in the ABC studios, a Superior Court judge at San Francisco City Hall was handed a piece of paper torn from a pocket-sized spiral notebook. “We the undersigned protest having to sit in a confined space with an admitted victim of a fatal disease which has baffled science and methods of transmitting are still not fully known,” it read.

  Andrew Small, the thirty-year-old “admitted victim,” was stunned. He knew he could have pleaded his health to get out of jury duty altogether, but he still felt such service was a civic responsibility. When word had spread among jurors, one woman’s husband demanded that she leave the jury. The others were upset as well. After the judge received the note, she called in the presiding Superior Court judge and Dr. Marcus Conant for consultation. Conant advised her that AIDS was not easily spread, and the judge was not inclined to let this crazy fear interfere with her courtroom. Andrew Small ended up resigning from the panel, however, deciding it was unfair to the litigants to have a splintered jury bickering over the hepatitis B model.

  On the same day, the papers featured the story of two San Jose nurses who quit their jobs after refusing to treat an AIDS patient. “There really isn’t anyone who wants to go in the room,” said one nurse. Among AIDS groups in Manhattan, word spread that nurses were similarly refusing to treat some people with AIDS, although New York hospitals did not see the problem as serious enough to warrant dismissal.

  Even in death, AIDS sufferers would not find respite from the fear and ostracism. The New York State Funeral Directors Association that week recommended that its 11,000 members refuse to embalm anyone who appeared to have succumbed to the epidemic.

  Doctors harbored no protective antibodies to hysteria. At the AIDS clinic at San Francisco General Hospital, clinic director Dr. Paul Volberding noticed that colleagues were less likely to shake his hand. Many seemed standoffish around him. Television news crews were similarly nervous about any physical contact.

  In San Antonio, paramedics demanded their own protective suits—consisting of a hospital gown, pullover hood, surgical mask, and shoe covers—for use when they neared a suspected AIDS patient. In a suburb of San Diego, authorities canceled a class in resuscitation techniques because nobody wanted to share the dummy used for demonstrations, fearing they might get AIDS. Haitian Americans suffered multiple indignities in the two cities where they were most concentrated, Miami and New York. Just trying on a pair of shoes in Florida sometimes became a traumatic experience, because salespeople declined to let anyone who looked Haitian near any merchandise. Haitian community leaders argued loudly that the Haitian category should be dropped from the CDC’s list of risk groups because they were the only nationality so singled out for treatment. In New York, some Haitians reportedly reassured anxious prospective employers that they hailed not from Haiti but from Martinique, another Francophonic Caribbean isle.

  Sociologists hypothesized that AIDS hysteria was more profound than the anxiety surrounding other diseases because AIDS was first identified in the gay community, a group that already suffered social stigma and inspired fear among many heterosexuals. The epidemic gave new fuel to old prejudices. Scientists themselves promoted the fear further with all the “ifs” and “buts” with which they compulsively qualified any statement about the disease. The pusillanimous talk about bodily fluids only made it worse.

  Where there are old anti-gay prejudices given new life, the Moral Majority cannot be far behind. Although the organization was still in the process of forging its final policy statement about the epidemic in the last weeks of June, its leaders were running trial balloons on the nascent rhetoric. “We feel the deepest sympathy for AIDS victims, but I’m upset that the government is not spending more money to protect the general public from the gay plague,” said Ronald Goodwin, executive vice-president of the group. “What I see is a commitment to spend our tax dollars on research to allow these diseased homosexuals to go back to their perverted practices without any standards of accountability.” Another Moral Majority spokesman was more aggressive: “If homosexuals are not stopped,” said the Reverend Greg Dixon, “they will in time infect the entire nation, and America will be destroyed.”

  In Houston, fundamentalist preachers called on health authorities to close gay bars. The Dallas Doctors Against AIDS started litigation to set aside a court ruling that decriminalized gay sexual activity between consenting adults in Texas.

  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.” Papers around the country reprinted an excellent series by Philadelphia Inquirer science writer Donald Drake about Anthony Fauci’s heroic effort at the National Institutes of Health hospital to save a gay man with interleukin-2 treatments and a transplant of lymphocyte-producing bone marrow from his healthy twin brother. Across the country, the series boasted headlines about how this could lead to an AIDS cure. Only at the end of the stories did the reader find out that the AIDS victim went blind and died. In June there also was much talk about using the thymus gland to create an AIDS breakthrough, while genetic engineering firms promoted cloning as a way out of the AIDS mess. At the KS/AIDS Foundation, the stories became known as the Cure-of-the-Week features.

  Such stories kept the focus of coverage on research and researchers. By now, AIDS largely was anchored in the area of science writers. General-assignment reporters might write an occasional social impact story, but AIDS fell into the science beat at virtually every American newspaper. Because of this, AIDS stories often had the explanatory flavor of Mr. Wizard—in deft hands, a good whodunit. They were not exposes or explorations of public policy questions. Thus, for all the coverage of the epidemic, there were precious few paragraphs delving into the politics of AIDS. A brief interlude came in early June when a frustrated Representative Ted Weiss went public about the problems Susan Steinmetz encountered in her CDC investigation.

  “It appears that we have something to hide,” responded Elvin Hilyer of the CDC, “but we don’t.”

  It was during this intense media interest in all things pertaining to AIDS that somebody at the CDC took a paper napkin from the downstairs cafeteria and wrote a historical marker for an office door. It read: “In this office in April 1981, Sandra Ford discovered the epidemic that would later be known as Acquired Immune Deficiency Syndrome.”

  32

  STAR QUALITY

  June 14, 1983

  DENVER

  Assistant Secretary for Health Ed Brandt thought the times demanded a forthright speech from Secretary Margaret Heckler. The homophobic tenor in the fear of AIDS rankled him. Brandt’s lifelong conservatism was deeply rooted in his straight-arrow sense of right and wrong. He wanted a clear statement that AIDS would not become a tool of discrimination against gays. He also thought gays deserved a pat on the back for having organized their own volunteer educational and service organizations to cope with the disease. It was, after all, what the Reagan revolution was all about: people doing for themselves, without government programs.

  Secretary Heckler agreed, although she knew she was walking into a lions’ den of critics in her scheduled speech before the U.S. Conference of Mayors. The mayors of the hardest-hit cities had called for $50 million in new federal AIDS research money and the promise of a presidential signature on the $12 million already passed by the House. Already, however, officials at the Office of Management and Budget (OMB) were saying that President Reagan would veto the $12 million; he wanted new AIDS research money to be diverted from other “wasteful” programs at the Department of Health and Human Services. An additional $50 million was an unbelievable sum to try to weasel out of the OMB. Heckler opted for the usual administration tact on such issues—say everything’s fine and you don’t need more money.

  The resulting seventeen-page speech, delivered by S
ecretary Heckler at the closing session of the mayor’s conference in Denver, marked the first official enunciation of AIDS policy by a cabinet official, and it dominated the day’s headlines.

  “Nothing I will say is more important than this: that the Department of Health and Human Services considers AIDS its number-one health priority,” said Heckler. “Your fight against AIDS is not a solitary one. We are in the fight with you.”

  After much reassurance that AIDS was not spread through casual contact, Heckler praised the “immediate” response of the National Institutes of Health and the government’s “non-stop pursuit to identify the cause of AIDS.”

  The most intriguing part of the speech was the section that was least quoted in the mainstream media. “Any reference to sharing information would not be complete without acknowledging the excellent work done by gay networks around the nation,” said Heckler. “They have responded to the crisis by offering comprehensive support to AIDS victims, and by working to inform the gay communities of the risks of AIDS, and how to minimize them. I know many of you in this audience have worked extensively with these groups, and I applaud their compassion.”

  By coincidence, the mayors’ meeting coincided with the second National AIDS Forum. In the highly charged atmosphere, virtually every issue sparked contentious debate; the AIDS Forum turned into a festival of AIDSpeak.

  The most vitriolic debates centered on the AIDS-prevention brochures the San Francisco delegation brought to the conference. The San Francisco Department of Public Health had hurriedly assembled its literature, a black-and-white flyer typed out on some department typewriter. Bill Kraus thought it was disgustingly amateurish and timid. There was no mention of bodily fluids or of specific sexual acts to avoid, such as anal intercourse. Instead, the flyer advised gays to decrease their partners, choose healthy partners, and “avoid sexual activity that may cause bleeding.” The flyer and the new poster were held up as models for other cities to follow. Indeed, they were the only AIDS prevention advisories that any public health agency in the entire country had issued.

  Bill Kraus and Catherine Cusic, co-chair of the Harvey Milk Club’s AIDS committee, had arrived at the forum with boxes of the Milk Club’s frank three-color brochure, “Can We Talk?” In cartoons and witty captions, the brochure explicitly told gay men what was safe and not safe. The advice came under such candid headings as Sucking and Fucking, with the appropriate subcategories of being sucked and sucking, being fucked and fucking. Kraus could appreciate that the health department could not issue such controversial brochures, but he thought the department should be ashamed to put its name on the sophomoric paper it was handing out at the conference.

  The New York contingent, largely from Gay Men’s Health Crisis, had arrived with a management plan. The neatly collated documents included flow charts and formal job descriptions that, to president Paul Popham, were the stuff of a sound organization. The booklet reflected GMHC’s dedication to nonpolitical service now that Larry Kramer was off the board of directors. Its education program consisted of symposiums on AIDS with eminent scientists and researchers. Unfortunately, though, the symposiums’ audiences were all full of the same 500 well-informed people. The lectures did not reach the people who needed an education most—the gay men who didn’t perceive AIDS as a threat to their own lives. To this accusation, GMHC AIDS activists came up with their own addition to the AIDSpeak vocabulary: “informed choice.”

  “You don’t tell people how to have sex,” the argument went. “You give people the information about how AIDS is transmitted and you let them make their own informed choice.”

  The strategy was consistent with the New Yorkers’ concerns over civil liberties. Health policy that could not pass muster with civil liberties lawyers was simply not considered. “Informed choice” had become an article of faith, not only for GMHC but for the New York Health Department, which showed no inclination to spend the money that health education would require. Even the bashful efforts of the San Francisco Department of Public Health were far too bold for these New Yorkers. When Pat Norman presented the San Francisco bathhouse poster, some New Yorkers booed openly.

  The concern that rallied New Yorkers was not education but confidentiality, the preferred word in the Manhattan AIDSpeak lexicon. The issue had exploded in New York not long before when the Centers for Disease Control contacted the New York Blood Center in hopes of nailing down more transfusion AIDS cases. The CDC had asked the blood bank for a list of its donors. Citing confidentiality procedures, the blood center refused this but said that if the CDC gave them a list of all the state’s AIDS patients, blood bank officials would compare the names to its roster of donors. In a moment of sheer buffoonery, the CDC complied. Even before this foul-up, New York gay doctors were angry at the CDC for its conduct of the cluster study in 1982, when researchers read names of early AIDS cases to other patients to see if they had had sexual contact with each other. Such research had helped establish that AIDS was a communicable disease, but this did not calm criticism of the CDC. Now, many New York City gay physicians refused to report AIDS cases for fear the CDC would hand out names right and left.

  Like most West Coast gay leaders, Bill Kraus didn’t get excited about the confidentiality issue, viewing the matter as typical East Coast closetry. Although he thought the CDC officials were idiots to give their lists to anyone, he couldn’t see spending much political capital on it. After all, the people on the lists were dying—it wasn’t as though they would be around for years to suffer much ignominy. New York City health officials, however, moved confidentiality to the top of their agenda. Commissioner David Sencer spoke of the need to preserve confidentiality as the city’s number-one priority. This pleased the Manhattan AIDS activists and took some of the sting out of the anger they felt about the lack of any city services or education programs. The city was very good on confidentiality, they assured each other. Only a handful of cynics pointed out that confidentiality, like the gay bathhouses, was a perfect issue for David Sencer to champion, because it did not require spending a dime. Symbolism nearly always triumphed over substance in the world of AIDSpeak.

  The final forum reports were perfect verses of AIDSpeak. The blood policy workshop, for example, issued a report that cast important public health issues in entirely political terms. Any blood screening, the report said, “must seriously weigh such issues as donor confidentiality, and the political and social effects of the method on donor groups…. In effect, direct or indirect questioning has excluded gay men as a class from donating blood. The quarantine of blood is an ominous first step towards further social, political, economic and even physical quarantine of a community already denied many basic civil rights protection. Stigmatizing the blood of an already disenfranchised segment of society may permit homophobic and racist forces to accomplish in the name of ‘science’ what they thus far have been unable to fully accomplish politically.”

  The public policy committee voted to “reaffirm our support for individual rights and vigorously oppose any attempt to legislate morality. This means that we oppose any legislative attempts to restrict sexual activities or to close private clubs or bathhouses.” In a final, glorious burst of immaterial rhetoric, the committee ended its report with the observation that, “We should never forget that we live in a homophobic society, or that homophobia is the major threat to our health. We must constantly struggle against internalized homophobia as we strive for gay and lesbian wellness.”

  With scientists increasingly leaning toward the theory that a single viral agent caused AIDS, the political strategies workshop concluded their report with a cautionary note. “We hasten to point out that the single virus theory is just that—a theory,” the workshop decided. “We believe the premature endorsement of any one theory prior to scientific proof will be devastating to the civil rights of the gay and lesbian community.”

  The risk-reduction workshop, which became the “Making Positive Changes in Sexual Mores Workshop,” had the opportunity t
o make the major contribution to the conference by agreeing on guidelines that might save lives. Instead, the workshop’s final report conceded, “No consensus could be reached with regard to essential versus elaborations of current risk-reduction guidelines. It was concluded that further debate was necessary.”

  “It was concluded that further debate was necessary.” Bill Kraus read the line aloud to Catherine Cusic, then wadded the paper in his hand. “Everybody in the gay community will be dead except two of these political dinosaurs debating over whether it’s politically correct to tell people to stop having anal sex.”

  Mervyn Silverman had always known he would be a doctor. His father was a dentist, so it was natural to pursue medicine and attend college close to his Washington home at Washington and Lee University. His internship at a county hospital in Los Angeles, however, convinced Silverman that he didn’t want to practice medicine, so he joined the Peace Corps and served two years in Thailand. As the Peace Corps medical director for Southeast Asia, Silverman learned the value of preventive medicine and found his calling. He then earned a master’s degree in public health at Harvard, and joined the Food and Drug Administration, eventually serving as director of its division of Consumer Affairs. Seeking more direct authority, he took the job as Wichita, Kansas, public health director, where he was an unlikely public official with his longish hair and handlebar mustache.