The Coming Plague

by Laurie Garrett

  A serious problem with this perspective lay in mounting evidence that GRID was transmissible. How could immune system dysfunction be contagious?

  “The fact that this illness was first observed in homosexual men is probably not due to coincidence,” Gottlieb wrote. “It suggests that a sexually transmitted infectious agent or exposure to a common environment has a critical role in the pathologies of the immunodeficient state.”15

  The only environmental factor under serious consideration was poppers—the amyl nitrites some gay men used in the bathhouses. Though many in the gay community and in physician circles favored the notion that the well-described, mild immunodepression that could be produced by nitrites explained the profound disturbance seen with GRID, the argument was not considered compelling to most scientists in the field.

  There was, of course, a fundamental flaw in trying to solve GRID on the basis of factors unique to the large U.S. gay communities: they weren’t the only people suffering and dying from the mysterious new disease.

  Frederick Siegal determined from a review of his medical records that his first Mount Sinai GRID patient was a thirty-year-old black woman from the Dominican Republic who died of profound immunodeficiency and related pneumonia in 1979. She, clearly, was not a gay man, nor apparently was her husband. She seemed to be a poor housewife with two children and no history of prostitution, drug abuse, or anything else to explain the lethal chaos of her T cells.16

  In Masur’s first New York City pool of eleven GRID patients were three heterosexual heroin or methadone users, one heterosexual cocaine addict, and two homosexual heroin injectors. In other words, for more than half of the men in the first New York group, drug use rather than gay sexual activity might have been the responsible factor. Clearly the phrase “gay-related immunodeficiency” couldn’t apply to the four heterosexual drug users; nor could theories of causality that centered on behavior and infections unique to the most promiscuous elements of the gay community.

  In Europe a smattering of cases among gay men were also noted in 1981; thirty-six in all, half of them in France. The first French GRID case was spotted by Dr. Willy Rozenbaum of the Claude Bernard Hospital in Paris in July, but Rozenbaum didn’t connect the strange symptoms experienced by the man, a gay flight attendant, with those described in the American reports until a month later, when his patient developed PCP.17

  By early 1982, GRID had devastated the immune systems of at least 310 men and a handful of women in the United States and Europe since 1978, killing 180 of them, and it appeared to be transmissible. Yet it still had aroused little interest or concern (outside a handful of public health circles), even from the populations at the greatest apparent risk. Total fiscal year 1981 U.S. federal expenditures on GRID research at the CDC and, minimally, at the National Institutes of Health came to less than $200,000.

  Fiscal year 1982 (begun on October 1, 1981) promised Jim Curran a GRID budget of $2,050,000, though the dollars did not concretely exist on any agency budget line, and twenty-five scientists, most of whom had to be diverted temporarily from other CDC programs. Darrow was tracking down the sexual contacts of known GRID cases, seeking to bolster evidence of GRID’s transmissibility. Guinan and Jaffe were running interference with the medical and gay communities, listening to theories and speculation while pushing for hard data.

  Though Jaffe thought reports of GRID among injecting drug users just about proved that the syndrome was caused by a transmissible agent, he couldn’t be sure. Most of the heroin-using GRID patients were dead by the time local doctors notified the Task Force on Kaposi’s Sarcoma and Opportunistic Infections, so Jaffe couldn’t interview the men to rule out the possibility that they might also have been homosexuals who were reluctant to reveal their sexuality to the physicians.

  Curran was convinced that GRID was an infectious disease, but he was a far more political animal than most of the men and women on his team. He knew that only very solid evidence would persuade the nation to take steps to stop the epidemic, and pushed his team to keep searching.

  And in the meantime he fended off seemingly endless countertheories, most emanating from the gay community and its physicians.

  “They seem to constantly want to consider other causes,” Curran would say. “A lot of people in the gay community are having a hard time accepting the idea that there is a new sexual disease. And a lot of heterosexuals want to think it’s some sort of uniquely gay plague.”

  Curran was also fighting on the financial front.

  He, infectious diseases division director Walter Dowdle, and Foege spent hours juggling the CDC’s budget numbers and personnel lists in a desperate search for funds and scientists. Among the programs they robbed of funds and personnel during the first eighteen months of the outbreak were hepatitis surveillance, rabies control, studies of the long-term effects of Legionnaires’ Disease, flu vaccine efficacy trials, Joe McCormick’s Lassa research in Africa, other STD programs, laboratory supplies budgets, and tuberculosis control.18 At the close of 1981, Curran drafted a bottom-line budget for his team’s needs for the coming six months, requesting $833,800. This modest request prompted dissent from some members of the team—notably Don Francis—who felt that far greater resources were necessary. But Foege and Curran thought the figures were rock-bottom reasonable, and the CDC director took the request to Assistant Secretary for Health Dr. Edward Brandt, Jr., four times during December and January.

  He was rebuffed.

  By early spring 1982, the body count was rising fast, and Curran and Jaffe were convinced a vast iceberg lay below the visible tip of PCP/Kaposi’s cases. They knew there had to be an asymptomatic stage to the disease, and they already had received reports of what sounded like a prodrome phase involving swollen lymph nodes and fatigue. Curran had no money to install permanent health advisers in the cities then reporting the greatest numbers of cases: Miami, San Francisco, Los Angeles, and New York. He had no funds for an active surveillance program to discover just how widespread the ailment might be in the United States. He couldn’t fund case control studies of the various populations of people who seemed to be coming down with the disease. And only through such studies could the agency possibly say with credibility how the disease was transmitted, by whom, to whom.

  Curran’s tone in memos and letters became increasingly plaintive.

  In April 1982, Curran warned the House of Representatives Subcommittee on Energy and Commerce, which controlled the CDC’s purse strings, that “this problem is going to get larger … and some very, very large studies will probably be necessary in terms of defining the natural history of the syndrome. The role that CDC plays in these studies … has yet to be totally defined.”

  Though Foege supported Curran inside the Public Health Service, and argued repeatedly with higher-ups for funds, he was circumspect before Capitol Hill politicians. In congressional hearings he struggled to protect his agency from larger cuts at the hands of the White House’s budget slashers, refusing to air the CDC’s behind-the-scenes hostilities.

  “As we have in the past when we have a health emergency, we simply mobilize resources from other parts of the Center,” Foege told congressional inquirers. “If we reach a point where we cannot do that, of course, then we will come back and ask for additional funds, but at the moment that is the way we intend to handle it.”

  Virologist Gary Noble was on Curran’s team, trying to set up a laboratory in which to search patient blood and tissue samples for evidence of a new virus. He spent most of his time writing memos requesting donations of surplus equipment, tables, and chairs from other CDC labs.19

  Off in Phoenix, Don Francis was furious. The moment he had heard of the PCP cases in Los Angeles months earlier, Francis had called his former Harvard mentor, Max Essex. Francis thought, as early as June 1981, that the ailment was cau
sed by a virus, though he had no idea what microbe might be blamed. Essex confirmed that it was reasonable to hypothesize a viral causality.

  From 1981 to 1983, Francis worked in Phoenix on blood samples shipped from Atlanta and gave Noble a hard time about the essentially nonexistent GRID lab at the CDC.

  “You gotta steal resources,” Francis would say. “You gotta be an entrepreneur, a Milo Minderbinder type,” he said, referring to Joseph Heller’s Catch-22. “Scrounge!”

  Noble offered to relinquish the viral effort to Francis.

  “Come on, Gary. I’m in Phoenix, two thousand miles away. That’s ridiculous,” Francis said. Eventually, however, he agreed to make monthly trips to Atlanta to review progress and assist in the “scrounging.”

  As 1982 got underway the people most concerned about GRID organized. In Paris a group of physicians, scientists, and gay activists formed the French AIDS Task Force;20 its goal was to trace the origins of France’s cases and determine the cause of GRID. Having already noted that several of the early cases were gay men who had traveled to the United States, the group initially followed the hunch that GRID’s cause was a transmissible agent that originated in America’s gay community.

  In New York City, Kramer’s GMHC group was busy preparing a musical benefit, from which they hoped to raise money to care for the growing numbers of sick, publish educational pamphlets to distribute in gay bars and bathhouses, and lobby for research on what they considered a truly terrifying disease.

  San Francisco’s doctors and patients were also getting organized. Savvy gay political leaders who played prominent roles in the Democratic Party pooled efforts with Dr. Marcus Conant to form an organization which after three name changes would come to be known as the San Francisco AIDS Foundation. And on Wards 5B and 86 of San Francisco General Hospital, Volberding and Gee were creating what would become the first hospital facility in the world dedicated specifically to the care of people with GRID. Volberding was seeking Kaposi’s volunteers willing to take experimental drugs and was lobbying the National Institutes of Health for research money.

  But there was no outpouring of funds anywhere. GRID researchers worldwide in early 1982 were scrambling for crumbs and robbing other scientific enterprises to pay for the detective efforts they felt compelled to carry out.

  Though he had no designated research funds, in response to Darrow’s prodding Moss prepared an incidence survey during the winter of 1982 designed to give him a sense of just how many gay San Franciscans might already have GRID, or some sort of “pre-GRID.”

  Moss, with his University of California at San Francisco colleagues Peter Bacchetti and Michael Gorman, organized Selma Dritz’s GRID information into a scientifically accessible form. They indexed the cases by zip code, then overlaid 1980 U.S. Census information on a San Francisco zip code map, rating zones according to numbers of never-married men over fifteen years of age. The zip codes with the most never-married men were in and around San Francisco’s Castro District, the hub of the city’s gay community. The majority of the GRID cases in Dritz’s Health Department files were from the same neighborhoods.

  Moss’s group drew three startling conclusions: “the incidence of [GRID] in San Francisco is following an epidemic pattern,” the incidence among all the city’s never-married men was about 102 per 100,000, but the incidence among never-married men in the Castro area was 285 per 100,000.21

  “Christ, this is big!” Moss told colleagues in an April 1982 seminar presentation of the data. He felt a knot in his stomach as he plotted projections from the incidence data.

  “What we see is that about three out of every one thousand gay men in San Francisco already have this disease,” Moss explained. “Now, if we assume the disease is caused by a transmissible agent, and we also assume this three-to-one-thousand rate has arisen fairly quickly, from something approaching zero back in 1977, then we can plot ahead. And it looks something like this.”

  On the graph’s vertical axis were percent-of-gay-population-infected numbers. On the horizontal axis were years, from 1977 to 1985.

  A line started at near-zero percent infected in 1977, and then climbed upward at a greater-than-45-degree angle, to 5 percent infected in 1978, about 15 percent in 1979, and over 40 percent of the city’s gay population already infected as the group sat in that room, looking at, but not wanting to believe in, the chart.

  By 1985, Moss predicted, three out of every four of San Francisco’s gay men would be infected if, as most of the scientists in the room believed, the cause was a sexually transmissible agent. And if nothing was done to prevent the horror from unfolding.

  Skeptical questions were asked, but Moss was known as an excellent, careful epidemiologist.

  Moss had secretly hoped somebody would find a critical flaw in his study, revealing it to be overly dramatic or exaggerated. When no such mistake was identified, Moss was emotionally shaken, and began having what he called “fits of paranoia” and nightmares. He would lie awake nights trying to shake a vision of ten thousand dying men, some of them undoubtedly his friends and colleagues. The study was a political hot potato, and the new team of eight scientists and doctors working under Volberding’s leadership—including Moss—were at odds over how best to release the findings. Feeling that the gay community should see the data as quickly as possible, Moss and Bacchetti discreetly leaked copies of their unpublished charts to key leaders of the San Francisco gay elite: members of the Harvey Milk and Alice B. Toklas Democratic Clubs.

  The information would not be formally released for nearly a year, however, when Conant would describe the study’s findings in a speech before physicians in New York City. And it wouldn’t be published until April 23, 1983.

  Moss was politically savvy and cynical enough to recognize that the U.S. President’s most avid constituency was composed of right-wing religious moralists, and he suspected that his dire forecasts wouldn’t muster much of a response in Washington.

  His worst-case scenarios began to come true. Though San Francisco and the California legislature authorized research funds for the unfolding epidemic, pleas to Washington and Bethesda for funds were met with silence.

  “This is an actual nightmare!” Moss said. “The sky is falling, we know it. You tell them it’s falling, but nobody listens.” He likened his funding search to “whacking a brontosaurus on the tail in San Francisco, and praying the neural message finally makes it all the way up the beast, to its peasized brain at the NIH and HHS [U.S. Department of Health and Human Services].”

  Throughout 1982 Moss would keep on whacking that tail, while going on with his research—with or without research funds.22

  In New York City, Dr. David Sencer, who had been forced out of his directorship of the CDC in 1977, was Mayor Edward Koch’s Health Commissioner. Still in touch with old allies in Atlanta, Sencer knew that their hunch was that GRID was infectious and not solely gay-related. In March 1982, Sencer called a meeting of the physicians in New York who were most involved in GRID research.

  “What do you want, and what do you need?” Sencer asked.

  The audience wanted answers to puzzles that were expensive to solve. What causes GRID? Who in New York had the disease, and what populations were at risk? How was GRID spread? What treatments should they give their patients? Was there any risk that doctors and nurses could get GRID from their patients—was it seriously contagious?

  Sencer agreed to contact the director of the National Institutes of Health, Dr. James Wyngaarden, urgently requesting funds to look for the answers. And he assured Mayor Koch that the CDC was lobbying hard for increased attention to the problem, obviating the need for large expenditures drawn from the already stretched municipal treasury.

  But NIH was not convinced that GR
ID warranted such urgent, high-priority consideration. Wyngaarden was appointed by the White House, as was his boss, Assistant Secretary Brandt. However persuasive the evidence of a dangerous epidemic might be, they were unlikely to win points with the White House by calling for urgent concern over what appeared to be a gay sexual disease.

  Reagan appointees throughout the federal public health structure reflected the administration’s concern for extremely conservative interpretations of health policy. Vociferous abortion opponent Dr. C. Everett Koop was named Surgeon General. Assistant Secretary Brandt was a “states’ rights” advocate who believed that most sensitive health issues—such as venereal disease prevention—were best handled locally, rather than at the federal level. For Health and Human Services Secretary, Reagan chose a mainstream Republican, Dr. Richard Schweiker. And Schweiker’s Deputy Secretary was Dr. Robert Windom, an ultraconservative Florida physician whose Ask Dr. Bob radio talk show, wildly popular in conservative circles, had positioned him as a leading celebrity fund raiser for the 1980 Reagan campaign. CDC director Foege, a close ally of former President Jimmy Carter, would soon be replaced by James Mason, a Mormon physician strongly supported by the conservative senator from Utah, Orrin Hatch.

  Inside the White House, Reagan surrounded himself with domestic policy advisers who considered even Schweiker and Brandt too liberal: Jack Svahn, Gary Bauer, Nancy Risque, Carl Anderson, Bob Sweet, and Becky Dunlap. These powerful six had their political roots in extremely conservative religious and policy groups.

  As Koop would later describe it: “The Reagan revolution brought into positions of power and influence Americans whose politics and personal beliefs predisposed them to antipathy toward the homosexual community.”23 So sensitive was the GRID situation in the eyes of the White House that, far from ignoring the epidemic (as has been alleged by many critics), key insiders sought almost from the beginning of the Reagan era to hold all federal actions on the matter under tight, centralized control. Koop, for example, though he was the Surgeon General and, therefore, logically the spokesperson for federal epidemic control, was flatly forbidden to make any public pronouncements about the new disease. More than five years would pass before Koop’s gag would be untied. A CDC budget outline and description of funding needs, written in response to congressional inquiry, was blocked by Secretary Schweiker’s office, and Democrats had to threaten congressional subpoena action to obtain the report in late 1982. Similarly, officials such as the NIH’s Wyngaarden, the CDC’s Mason, and HHS’s Brandt knew they were expected to clear all potentially controversial comments on the topic with the Domestic Policy Council inside the White House.24