And the Band Played On

by Randy Shilts

  A vague awareness of something horrible had seized the collective gay consciousness by this summer, however. Businessmen were able to deal with the trend, even if politicians were not. The advertisements amounted to a blitz in the gay newspapers for astronomically priced vitamin packets called HIM—Health and Immunity for Men. The packets contained “natural vitamins, minerals and herbs for the sexually active male.” The unique HIM formula, the advertising promised, helped in “maximizing the immune system to fight infection” and “maintaining sexual vitality and potency.” The advertisements didn’t come out and say, “Eat these vitamins and you won’t die a miserable death,” but that clearly was the exploitive intention as the vitamin packs became hot-sellers in gay neighborhoods across the country. The sewers of Manhattan and San Francisco flowed with the most vitamin-rich urine in the nation, even as gay men trooped off to the baths, convinced that if there was really something dangerous in the business, their leaders would warn them. They were all in this together.

  August 19

  WASHINGTON, D.C.

  The Dallas conference had drawn a dribble of coverage from the wire services, most of which grabbed the AIDS angle because of the dramatic rise in cases. Days later, Washington bureaucrats responded to the publicity the way they know best, with a press release.

  “Dr. Edward N. Brandt, Jr., Assistant Secretary for Health, today directed agencies of the Public Health Service to step up activities to combat Acquired Immune Deficiency Syndrome, a little-understood syndrome afflicting increasing numbers of people in the United States.”

  The instructions Brandt announced that day included continuing studies of hemophiliacs, review techniques to eliminate diseases from Factor VIII, involvement of all groups affected by the epidemic in future AIDS meetings, and a call for the National Cancer Institute to “act as expeditiously as possible” in getting out $2.2 million in government and nongovernment AIDS research projects financed for the next fiscal year. Toeing the FDA line that no peril existed to the nation’s blood supply, Brandt also stated, “The lung infection in three patients with hemophilia is disturbing. At this time, however, we can’t be sure there is a connection between blood products used by these patients and AIDS.”

  Brandt’s instruction for the National Cancer Institute to act “expeditiously” was chuckled over in many key AIDS research centers across the country. After all, it had been nearly a year since the money was pledged, and the grant application process was not slated to begin for another month, meaning it would be mid-1983 before any National Institutes of Health funds were released, “expeditiously.”

  The brief moment of official interest in the syndrome sparked a spate of further news coverage that fell into what was becoming a familiar pattern. 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.” The dozen harried CDC staffers who could barely keep up with breaking developments were transformed by Newsweek into a “75-member CDC task force,” a number that presumably included every CDC staffer who ever sat in on an AIDS Task Force meeting. Two weeks later, a Time magazine story expanded the CDC Task Force to 120 members.

  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. Big task forces meant the problem might be solved, and every month or so, tucked away in the second section of most newspapers, a few wire-service paragraphs appeared about this or that breakthrough in AIDS research. There were headlines like, “KS Discovery Brings Glimmer of Hope,” but, in truth, there were no glimmers of hope as summer faded to fall in 1982. There were just bureaucrats who thought they could both hold back domestic spending and thwart a virulent new epidemic, as well as newspaper editors who didn’t care to run much about a homosexual plague and didn’t care whether what they did run was true.

  Meanwhile, in the last weeks of August, two more states reported their first AIDS cases. The epidemic now had swept into twenty-six states and a dozen nations.

  19

  FORCED FEEDING

  September 1982

  BUREAU OF COMMUNICABLE DISEASE CONTROL, SAN FRANCISCO

  In her cramped office, piled high with medical journals and manila folders of disease records, Dr. Selma Dritz was on the phone to Atlanta, wondering whether they understood how serious this all was. Still another disease was starting to appear among gay men, and she was convinced it was related to AIDS. As an epidemiologist, Dritz played a numbers game and she wanted the new disease included in the AIDS numbers. As usual, she was fighting with the Centers for Disease Control about it.

  The first patients had gone to their doctors with lymph nodes the size of golf balls. This wasn’t your garden variety lymphadenopathy. The diagnosis was Burkitt’s lymphoma, a lymph cancer that was among the first human cancers linked to a virus. A number of San Francisco researchers, in fact, had once worked in Africa on studies that connected Burkitt’s lymphoma to the Epstein-Barr virus, the microbe that in the United States most commonly caused mononucleosis, or the “kissing disease.” Dritz was intrigued because, once again, she was seeing a tumor caused by a virus arising in the immune-deficient gay men, just as Kaposi’s sarcoma had been linked to the cytomegalovirus in Africa. The immune deficiency seemed to let these viruses run wild and foster the tumors. The detection of this phenomenon had implications far beyond AIDS; the trend might offer new insight into the relationship between cancer and viruses.

  When the first reports came in, casually from doctors she would be chatting with, Dritz did her homework. She checked with the California Tumor Registry in Sacramento, where all California cancer cases are recorded, and found that statisticians expected only two or three cases of the rare cancer for the entire state in two years. Dritz had eight cases, all among San Francisco gay men, in just nine months.

  “Burkitt’s lymphoma is a form of AIDS,” Dritz told the CDC, in her most matter-of-fact Chicago voice. “We should start counting it and let people know.”

  The CDC demurred that they weren’t hearing of it anywhere else. Of course, Dritz thought, no place else is as organized as we are in San Francisco. Health officials in other cities weren’t on the phone to doctors every day to tail this horrible marauder of gay men’s health. It was one of the things that made Dritz grateful for her complicated network of gay community contacts.

  Dritz never nagged, but even as she hung up, the doctors at the CDC were betting that she would keep her own set of statistics now. She’d have one set of statistics that counted AIDS cases by the narrow CDC definition, and she’d have another that counted cases by the definition that gave her the most accurate profile of what was killing people in her city. They were right. The two lists were kept, making it that much easier when the CDC ultimately relented to the no-nonsense health officer and added Burkitt’s lymphoma to the ever-lengthening list of AIDS ailments. By now these included fungal infections of birds, sheep, cats, and deer, as well as cancers that appeared all over the body, on the tongue, in the rectum, or most horrifically, in the brain.

  September 15

  FEDERAL BUILDING, SAN FRANCISCO

  “How much do you need?” asked the burly congressman flatly.

  Bill Kraus had prepared long explanations with intricate details on why complicated lymphocyte research needed so much money at, say, the Nation
al Institute for Allergy and Infectious Diseases and why deeper studies of intravenous drug users needed so much more money at the Centers for Disease Control.

  Congressman Phil Burton just wanted a dollar figure so he could get on with business. Kraus hesitated.

  “We really have no idea, to be honest,” said Kraus, sheepishly. “There’s no way to find out how much you need for any health problem. There’s no mechanism.”

  Kraus’s only measure of spending had come with a Congressional Research Service report. The report found that in 1982, the National Institutes of Health’s research on toxic shock syndrome, a mystery that had by then been solved, amounted to $36,100 per death. NIH Legionnaire’s spending in the most recent fiscal year amounted to $34,841 per death. By contrast, the health institute had spent about $3,225 per AIDS death in fiscal 1981 and $8,991 in fiscal 1982. By NIH budget calculations, the life of a gay man was worth about one-quarter that of a member of the American Legion.

  The torpid pace of NIH involvement was most galling to Kraus. The National Cancer Institute still had not released an application for the more than $2 million in grants they had grandly announced last month. The promise of NCI money had, in fact, been lying dormant for more than a year now. The National Heart, Lung, and Blood Institute, which does research on blood issues, had spent all of $5,000 on AIDS in fiscal year 1982. Even after the discovery of AIDS in contaminated Factor VIII, the institute was budgeted to spend only $250,000 on AIDS in the next year. Moreover, there was no inclination within proposed budgets for either the NIH or CDC to raise AIDS funding, even though caseloads were skyrocketing with each passing month. The joke among gay congressional staffers was that NIH stood for Not Interested in Homosexuals.

  Senator Harrison Schmidt had managed to sneak an extra $500,000 into a recent supplemental appropriations bill, earmarked especially for AIDS research at the CDC, but the administration had vetoed the bill as too costly.

  While Phil Burton waited impatiently for a suggestion, Bill Kraus cast about in his mind for some nice round numbers.

  “We should ask for $5 million for the CDC and $5 million for the NIH,” suggested Kraus.

  “Hell,” countered Burton. “Let’s ask for $5 million and $10 million.”

  Kraus realized that such numbers were nothing to Burton, who daily kept tabs on a federal budget that was counted in the hundreds of billions of dollars. But the proposal represented a 3,000 percent markup on AIDS funding, and it was soon introduced into the House.

  In Washington, Tim Westmoreland, as chief staffer for the House Health Subcommittee, volunteered to put the legislation into legalese, and it was introduced on September 28. Journalist Larry Bush called it “the first gay pork barrel,” and, for a movement that could barely raise the tens of thousands to finance a national organization, the appropriation seemed gargantuan. Phil Burton’s bills, Kraus knew, were only symbolic, because the funding ultimately would be written into some larger spending bill, but the bills added Burton’s formidable political clout to that of the House health point man, Representative Henry Waxman.

  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.

  The supplemental appropriations bill set the pattern for how Congress and the Reagan administration would deal with AIDS for the next three years. The administration, of course, opposed the extra money, dispatching its agency chiefs to argue that they had all the funding they could use. Once the money was passed by Congress, however, the administration would not put itself in the politically indelicate position of actually vetoing it. Ultimately, the money was made available, usually much later than the scientists needed it. The Reagan administration would never ask for it and insist it didn’t want it, but the money would be thrust upon the government anyway. It was a ritual of forced feeding.

  As he savored his ability to finally make a difference on this issue, Bill Kraus thought briefly that Henry Kissinger was right about one thing. Power did have certain aphrodisiac qualities. The boost from ensuring the first major funding for fighting the AIDS epidemic came as his spirits badly needed to be lifted. Kico Govantes had gone off with his architect, and Bill again was single. Of course, he never lacked dates, but he was feeling uncomfortable about sex and uncomfortable about the way he had lived his life during the raucous late 1970s. It was around this time that friends and colleagues started noticing his late office hours and how his conversations didn’t travel much away from the new epidemic and all the things that needed to be done. Friends nodded to each other knowingly, understanding that Bill was throwing himself into his work after the end of what would always be his most romantic love affair.

  September 27

  SAN FRANCISCO BOARD OF SUPERVISORS CHAMBERS, CITY HALL

  The supplemental appropriation sailed through the board of supervisors without a dissenting vote. Bill Kraus and Dana Van Gorder had timed the vote perfectly. Half the board was up for reelection in five weeks. Nobody would dare vote against public health money, given the fact that one in four city voters was gay. Mayor Feinstein personally felt the money should come from some other part of the health budget, but Bill Kraus knew her hands were tied as well. She was up for reelection next year and wouldn’t dare veto an AIDS funding bill.

  It was brute political power moving the San Francisco government to spend $450,000 to finance the world’s first AIDS clinic, grief counseling and personal support for AIDS patients through the Shanti Project, and the first locally funded education efforts through the Kaposi’s Sarcoma Foundation. 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.

  October

  ALBERT EINSTEIN COLLEGE OF MEDICINE, BRONX, NEW YORK

  As chief epidemiologist for the AIDS Task Force, Harold Jaffe had already heard the pediatricians deriding the notion that AIDS could appear in babies. He knew that some scientists, like Arye Rubinstein, were being mocked for arguing so passionately that the epidemic had spread to infants. All the pediatric immunologists had assured Jaffe that these were congenital deficiencies misclassified as AIDS. The immune syndrome, they insisted, was a disease of homosexual men.

  Jaffe could see with the first babies Rubinstein showed him, however, that they were not the victims of a congenital defect; they had AIDS. His findings were also consistent with those of Dr. James Oleske, an immunologist who had treated dozens of babies in the slums of New Jersey, where AIDS was running rampant among drug addicts. Jaffe came away convinced and started framing an MMWR article on AIDS in babies.

  The development, he knew, strengthened the case of people who, like himself, argued that a single agent, transmitted through the placenta in this case, caused AIDS. It also directed attention toward the probability that the agent could be spread through blood transfusions, something that the CDC was desperate to prove so the blood industry would start taking precautions. Jaffe’s findings also pointed to still another depressing dimension of the AIDS problem. No sooner had researchers settled on the existence of AIDS in drug addicts than they discovered it in their babies.

  If Harold Jaffe was sure of nothing else in October 1982, he was sure that the numbers of people with AIDS, in all risk groups, would continue to increase. The pace of new reports was quickening every day in Atlanta. The operative term in Building 6 was “exponential.”

  It was during Jaffe’s New York visit that somebody mentioned that there were three children, born of the sam
e prostitute, all being treated for immune deficiency at the University of California in San Francisco. Jaffe was going to be in San Francisco later that month for an AIDS conference anyway. He wrote a reminder in his notebook: “They all have separate fathers. It doesn’t fit the pattern of any known inherited immune deficiency.”

  The different epidemiological trails AIDS was blazing led the small group of people involved in its research to one conclusion: This thing was getting much bigger. Moreover, the spread among such diverse elements of the population meant it was going to get much, much worse before it got even slightly better.

  CENTERS FOR DISEASE CONTROL, ATLANTA

  The start of the federal government’s new fiscal year on October 1 found the AIDS Task Force still scrambling for money. CDC budget managers had to prepare three budgets for its AIDS work before it submitted one that scaled down AIDS spending enough to be acceptable to the administration. When Wilmon Rushing, acting administrative officer for AIDS, sent the final budget to CDC management, he warned, “As you know, the attached budget is insufficient to adequately fund AIDS surveillance and epidemiologic studies. However, we will continue with the highest priority activities until additional funds become available.”