And the Band Played On

by Randy Shilts

  Gallo interrupted and asked sharply where the antibodies came from.

  Essex’s younger associate said that they had come from samples Gallo had previously sent to him. Gallo exploded.

  “How can you collaborate with me and you’re doing stuff behind my back?” he shouted. “If you’re using my materials on anything, I need to know about it in advance. You need my approval.”

  Gallo spent the next forty-five minutes berating Essex and his colleague. The CDC doctors were aghast. This guy came all the way to Atlanta so he could spend all this time abusing some junior researcher? This was the ugly side of the National Cancer Institute that the CDC researchers sometimes talked to each other about. 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. The outburst confirmed the CDC’s darkest suspicions about the NCI and left the CDC officials visibly embarrassed by Gallo when the meeting was over.

  Robert Gallo seemed embarrassed himself as Don Francis drove him back to the airport after the conference.

  “I got carried away,” Gallo confided. “My Italian style.”

  Francis was forgiving. He understood what Gallo knew about himself: that his greatest strength was also his major fault. The temper and arrogance were what made Gallo a formidable enemy to disease.

  Momentum propelled news coverage of the AIDS epidemic, and six months of growing media movement peaked in late July, bringing camera crew after camera crew to a simulated lab in a corner of the CDC headquarter’s gym. The bogus lab was used to minimize interruptions in the real CDC work going on in labs. Here sundry teams from all the Eyewitness News and Instant Eye shows enthused that the CDC was on the trail of the killer, and that this or that “breakthrough” heralded a possible end to the disease. In early July, Time magazine had done a CDC cover, entitled “Disease Detectives: Tracking the Killers,” and by July 26, Newsweek reporters walked the CDC hallways in preparation for their cover story due out in two weeks. Between July and September, the nation’s major print media churned out 726 stories on AIDS, more than would appear in any other single quarter for another two years. In Washington, the Public Health Service issued regular bulletins to the press, making specious claims that “large [NIH] awards have already been made” for AIDS studies and that the CDC had embarked on “intensive laboratory investigations to identify the infectious agent of AIDS.” The CDC’s efficient media relations staff also provided videotapes of CDC scientists actually performing real AIDS research for the various Ken-and-Barbie television news teams.

  Despite the reporters’ optimistic chatter, personnel at the CDC’s AIDS Activities Office recall these months as the most frustrating in the course of the epidemic. A new computer surveillance system was set up to monitor national AIDS trends more efficiently. Two months before, the CDC had made AIDS a reportable disease, requiring state and territorial health officials to report all known cases to Atlanta. Most state health officials, by now, had issued similar requirements to their county health authorities. The earlier dark predictions segued to reality, with the numbers mounting quickly. 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. Every new lead meant an old lead could not be followed. That summer, the hottest new lead sprang from all the European medical journal reports on the Zairian connection with AIDS. A CDC team was dispatched to Zaire to investigate.

  A staff harried by pressing new demands barely had time to analyze even the old research. Only in August, nearly two years after it was launched, was the original case-control study slated to be published in the Annals of Internal Medicine. Difficulties in getting computer time for statistical analysis, and the business-as-usual publication schedules of medical journals, conspired to stall the dissemination of this essential AIDS information.

  It seemed the CDC doctors were always on the phone with one or another local health official, or delivering the same old reassurances to the reporters. Later, dispirited AIDS staffers at the CDC complained they spent more time in July 1983 controlling AIDS hysteria than controlling AIDS.

  On July 26, 1983, in Reno, Nevada, the National Gay Rodeo was only days away from opening. The Pro-Family Christian Coalition had organized opposition to the annual rodeo, which routinely drew 50,000 gays, for fear that all those homosexuals would spread AIDS throughout Nevada. The group took out full-page ads in local papers, urging the county government to cancel the contract allowing the gay organization to use the Washoe County Fairgrounds for the event. To buttress their arguments, the group recruited Dr. Paul Cameron, a longtime homophobe from Nebraska, who described the gay community as a “living, breathing cesspool of pathogens.” Cameron also said, “Here is a subclass of people, who, as a function of their sexuality, are consuming prodigious amounts, from a medical standpoint, of fecal material. Any community that allows thousands of these people to congregate will run a considerable risk, not only from AIDS but other disease such as viral hepatitis.” Cameron cited the Journal of the American Medical Association on “routine household contacts” as ample evidence for his views.

  The Reverend Walter Alexander of Reno’s First Baptist Church went one step further by telling reporters that, “I think we should do what the Bible says and cut their [homosexuals’] throats.” The man who ran the anti-rodeo ads in the local newspapers opined that he didn’t want to see anybody actually murdered because of the ads, although he wouldn’t criticize Alexander’s comments directly because the minister clearly had authority to speak on matters “biblical.”

  Few regions were immune to the AIDS anxiety sweeping the United States. In New York City, a bank robber used that fear, handing tellers a note demanding cash. “I have AIDS,” the note read, “and I have less than 30 days to live.” The strategy worked. One bank employee later admitted she could have dropped behind her bandit barrier and called for help, but she said she was so worried that she might have contracted AIDS from touching the note that she handed the man all $2,500 in her till. At a Chemical Bank branch, a teller broke out laughing when she read the note, thinking it was a joke. She was showing the note to other tellers and was still laughing as the disgruntled bandit made his way out the door empty-handed. By the time police captured the robber in mid-August, he had used the tactic in robbing ten banks of $18,000. He did not have AIDS.

  Rumors spread that this or that celebrity had AIDS, often fostered by gay activists convinced that the epidemic would not get serious government attention until it hit somebody famous. In New York, Calvin Klein gave an interview to deny the widespread rumors that he had AIDS. He was “ridiculously healthy,” he maintained. Apparently, rumor-mongers confused Klein with designer Perry Ellis, who died of AIDS three years later.

  The Alert Citizens of Texas inflamed local fears with their brochure “The Gay Plague,” which provided detailed descriptions of bathhouses, rimming, and golden showers. A nationally distributed Moral Majority Report also explored every unsavory aspect of gay life in gory full-color detail. And Rev. Jerry Falwell now told concerned Americans that they could fight the spread of AIDS by giving money to him.

  In Seattle, gay-bashing was less figurative that week, as gangs of youths roved Volunteer Park, a local gay cruising spot, and beat up gay men with baseball bats, sho
uting invectives about “plague-carrying faggots” and “diseased queers.” One gang raped two men with a crowbar. Once arrested, one attacker told police, “If we don’t kill these fags, they’ll kill us with their fucking AIDS disease.”

  Nationally, the response was less severe, although the marked lack of hysteria among most Americans received very little press. A Gallup poll conducted in late June reported that 77 percent of Americans had heard or read about AIDS. A second survey of adults quizzed on July 20 and 21, found that 91 percent had been exposed to AIDS information. Of these, 25 percent thought there was a chance they could get AIDS from casual contact with an AIDS sufferer. Of the one-quarter of respondents who said they had gay friends, only 21 percent said they were less comfortable in a homosexual’s company. Although gay activists across the country defended such institutions as bathhouses on the belief that Americans were ready to confine gays to concentration camps, the poll revealed that support of gay rights had grown in the past year, with 65 percent of Americans supporting equal job opportunities for gays. This represented a 6 percent increase in gay rights support since 1982.

  Hysteria stories were juxtaposed with those peddling false hope. That summer various snake-oil salespeople, including Swami Shri Mataji Mirmala Devi from India, claimed to have the power to cure AIDS. One San Francisco diet therapist lectured eager gay men on “Cum as an Indicator of Health.” According to this dietician, men could monitor their health by examining the consistency of their semen. A press release boasted that he also could “talk about foods that are cum enhancers.” Federal postal inspectors cracked down on a company that, for $1,900, would send AIDS victims an injection treatment that would cure the deadly syndrome.

  The response of the U.S. Department of Health and Human Services to the mounting hysteria and misinformation was its toll-free hotline, which took between 10,000 and 13,000 callers a day. This was no small feat because the service, with its six operators, was designed with neither urgency nor a national perspective in mind. Indeed, more than 90,000 calls that came in to the hotline went unanswered just in the month of July.

  Like most of the summer’s hysterical episodes, the flare-up over the Reno Gay Rodeo produced more heat than light. On the night of July 26, the county commission’s gallery was crowded with reporters, fundamentalists, and anxious gays from San Francisco, who had come to make sure boxcars weren’t being readied in the hinterlands. The Washoe County Commission listened to the fundamentalists’ fears and the researchers’ reassurances, and determined that it could not legally break its contract with the National Gay Rodeo Association. Some 45,000 people bought tickets for the rodeo days, and there was no later appreciable increase in the number of AIDS or hepatitis casualties.

  The last word on the controversy, however, came from Action for Animals, an animal rights group based in Berkeley, California, which expressed its indignation in letters to San Francisco’s gay papers. Gays should be ashamed of any sport, the group wrote, that is based on the “exploitation and abuse of non-humans.”

  The day that Robert Gallo met with CDC officials in Atlanta, Assistant Secretary for Health Edward Brandt put together a new request for $35 million worth of further AIDS research at the Public Health Service. Brandt originally had requested the money for fiscal year 1984, which was due to begin in three months. Now, however, he asked Secretary Margaret Heckler for permission to go to the Office of Management and Budget for approval of the funds “on an accelerated business.”

  Brandt understood the dangers of his request. Congress had only recently approved the $12 million supplemental AIDS funds; another appeal so soon was guaranteed to generate a hard look by the cost-conscious OMB. Nevertheless, Brandt wrote, “Each of these proposals addresses a critical health need which is receiving increased public attention and congressional scrutiny. At the same time, these three items are appropriate areas of federal involvement in which the department should continue its leadership role.” Brandt attached a six-page, single-spaced breakdown of how the FDA, CDC, and NIH would spend the money.

  “The request for each of these agencies assumes that by FY [fiscal year] 1984 [October] a causative agent will have been isolated and a reliable screening test will have been developed,” Brandt concluded.

  Without such a breakthrough, the agencies would need even more money.

  The next day, Secretary Heckler announced that, in keeping with the administration’s commitment to AIDS as its “number-one health priority,” the government would step up its AIDS education efforts by adding new staff to its toll-free AIDS hotline. She made no comment about added funds for AIDS research.

  On Capitol Hill, Representative Ted Weiss prepared for the subcommittee hearing on federal AIDS funding to be held in a few days. He still struggled with the Department of Health and Human Services for permission to allow congressional investigators to review CDC budget records. However, the agency had turned over many of the relevant internal memoranda, two of which were of particular interest to Weiss. One, which came through less-than-formal channels, was from the National Cancer Institute, ordering that before any interviews with congressional investigators, NCI researchers should advise agency officials and “invite” a top administrator to attend. So much for an independent inquiry, Weiss thought.

  A second memo, dispatched by CDC Director William Foege, simply told federal agency heads that, “All material submitted to the Congress must evidence the Department’s support of the administration’s stated policies.”

  At about the same time that Don Francis dropped Robert Gallo off at the Atlanta airport, reporters in San Francisco were being led through the cheerful yellow and orange hallways of a newly redecorated hospital ward that, until recently, was used by interns for naps between shifts. Now, San Francisco General Hospital’s Ward 5B was the AIDS Ward.

  All the nurses were volunteers. About half were gay men and the other half were women. All had undergone extensive encounter sessions to examine their sentiments about death and dying. Cliff Morrison, a gay clinical nurse specialist, organized and designed the ward as he saw fit, because the more important hospital administrators all seemed rather embarrassed by the ward and the disease. The thirty-two-year-old Morrison was a dedicated idealist who disliked the hierarchical doctor-nurse-patient model that dominated hospitals. Doctors would not run this ward; he would, and he wouldn’t even call himself head nurse, preferring instead the less authoritative moniker of “nursing coordinator.” Patients would have a louder voice in their own care, which only made sense, Morrison noted, because they usually knew more about the intricacies of their often-experimental medications than their doctors.

  Community groups, such as the Shanti Project, which recently had opened its first city-funded residences for homeless AIDS patients, had free rein in Ward 5B. Volunteers from a number of AIDS organizations and gay religious groups bustled from room to room. The day that patients went in, a social services worker began developing a plan for their life after they left. Morrison also rejected the idea of visiting hours as a concept designed for the convenience of nurses rather than patients, and he instituted policies to permit visitors to stay overnight if they wished.

  There were also conversations with every patient about code status. Upon respiratory failure from, say, Pneumocystis pneumonia, a patient could ask for code-blue status, a request that hospital staff use all necessary means to preserve his life. Usually that meant a respirator. After two years of experience with AIDS patients, however, doctors found that 85 percent of Pneumocystis sufferers who went on a ventilator never came off the contraption. They died a miserable and silent death, with a tube stuck down their throats. In Ward 5B, most patients opted to go without the blue code, asking that no extraordinary measures be used to preserve their lives. In the months to come, more patients in Ward 5B made that choice than in all the other hospital wards combined.

  When Cliff Morrison and Dr. Paul Volberding, the AIDS Clinic director, cut the ribbon for the opening of Ward 5B on that
Tuesday afternoon, Volberding was amazed that hospitals elsewhere, particularly in New York City, weren’t planning similar wards; the facilities clearly would benefit both patients and doctors, who were still struggling to understand the grisly array of AIDS complications. It seemed that every new MMWR reported some new disease associated with the syndrome, some of which were maladies that most typically strike animals.

  New research indicated that whatever virus killed the T-lymphocytes of AIDS patients also caused malfunctions of B-lymphocytes, another key component of the immune system. Neurological symptoms were becoming more common. Cases of lymphadenopathy were now so common that the CDC had recently defined a new phenomenon called AIDS-Related Complex, or ARC. In a conference call with a number of AIDS researchers, including Dr. Don Abrams, assistant director of the AIDS Clinic, the CDC arrived at what Abrams called a “Chinese menu” approach for its definition. A person had ARC if he or she had two clinical conditions or certain lab test results on the CDC list. Two from column A and two from column B constituted ARC. The most pressing question was whether ARC was always a precursor to AIDS or simply a milder infection. In his two-year-old study of 300 lymphadenopathy patients, Don Abrams hoped to show that ARC was a healthy reaction to infection with an AIDS virus. Patients got swollen lymph nodes and a few mild infections like thrush, Abrams hypothesized, while their bodies kept enough lymphocytes to fight off one of the deadlier diseases associated with AIDS. Abrams’s optimism was fueled by the observation that only a handful of the lymphadenopathy cohort had actually come down with AIDS—so far. However, Abrams wasn’t sure what to make of the strange disorders of the central nervous system that he was beginning to see among these patients.