With time, some of Reagan’s appointees would surprise observers at both ends of the political spectrum with their independence of thought and action. But there was no visible abundance of it inside the Reagan administration in 1982.
Not surprisingly, David Sencer’s letter to Wyngaarden didn’t result in the prompt action he and Mayor Koch had expected. It would be more than three months before the NIH would issue its first Request for Applications on GRID research (on August 13, 1982), and a full year before the selection and granting process would be completed. Checks for the first formal research grants to basic scientists wouldn’t be cut until May 1, 1983.25
Researchers on the front lines warned that precious time was being lost, and the disease was spreading. But the NIH officially deflected most interest in GRID back to the CDC. In response to Sencer’s urgent plea, Wyngaarden suggested the New York City Health Commissioner wait a year, for the NIH’s next annual grant round. When an internal NIH report, signed by the director of the National Cancer Institute, urgently recommended creation of an emergency joint NIH/CDC task force to study the mysterious disease, Wyngaarden responded coolly: “While NIH does not bear a direct responsibility for controlling the outbreak, it is apparent that an epidemic of this sort may offer significant scientific opportunities … . I hope that NIH will not fail to capitalize on any opportunity to contribute … .â€26
At the annual meeting of the American Public Health Association during the summer of 1982, the group’s president, Dr. Stanley Matek, charged that the CDC was forced to stoop to “robbing Peter to pay Paul … Peter is currently the money for venereal disease and other vital public health problems.â€
By that time the CDC had spent just under $1 million for some thirteen months of GRID research.
In roughly the same amount of time—or less—the CDC had spent $9 million in pursuit of the cause of death of twenty-nine Legionnaires in 1976–77; more than $1 million on Ebola hemorrhagic fever investigations in Central Africa; at least $135 million on Swine Flu investigation and vaccine development. By the end of 1982, Brandt would defend the Reagan administration by pointing out that between June 1981 and December 1982 a total of 5.5 million federal government dollars were dedicated to the GRID effort, dispensed to the CDC, NIH, and Food and Drug Administration.
This would not appease critics.
“There is no doubt in my mind that if the disease had appeared among Americans of Norwegian descent or among tennis players, rather than gay men, the response of the government and medical community would be different,†charged powerful Democratic Party member Congressman Henry Waxman of California. “I want to be especially blunt about the political aspect of Kaposi’s sarcoma. This horrible disease afflicts members of one of the nation’s most stigmatized and discriminated against minorities. The victims are not typical mainstream Americans. They are gays mainly from New York, Los Angeles, and San Francisco. Legionnaires’ Disease hit a group of predominantly white, heterosexual, middle-aged members of the American Legion. The respectability of the victims brought them a degree of attention and funding for research and treatment far greater than that which has been made available so far to the victims of Kaposi’s sarcoma. I want to emphasize the contrast between the ‘more popular’ Legionnaires’ Disease—which affected fewer people and proved less likely to be fatal—and Kaposi’s sarcoma. What society judged was not the severity of the disease but the social acceptability of the individuals afflicted with it.â€27
With more than 500 diagnosed GRID cases in America, an apparent death rate of 50 percent, and no sign the epidemic would spontaneously abate, the mysterious ailment had become thoroughly politicized. Battle lines were drawn. Public health scientists and physicians were forced—against the basic natures of most—to choose sides. With time the situation would only worsen, antagonisms would heighten.
Swine Flu and Legionnaires’ Disease had certainly been politicized epidemics, but scientists working on the front lines had, for the most part, been shielded from the squabbles and allowed to pursue their investigations. And they never lacked sufficient resources. If GRID had been, for example, a lethal contamination of a commercial food product, there would have been no question of the CDC’s public health mandate: order a recall of the product, issue high-profile public warnings, and identify and disinfect the source of the contamination.
But what constituted proper health action in 1982 for GRID?
Curran and Jaffe felt a key part of their job was to warn the gay community. In public forums in New York, San Francisco, and Los Angeles the CDC scientists labeled GRID “an epidemic unprecedented in the history of American medicine†and urged gay Americans to shake themselves out of a state of collective denial. Curran would point to Bill Darrow’s data showing that the more sexually active a man was, the greater his risk of contracting GRID.
Meanwhile, Darrow had for months been using the standard sociology techniques he had applied to other disease problems during his twenty-one years with the CDC, to try to disprove etiologic roles for “poppers,†“fisting,†and other environmental factors, and prove that GRID was caused by an infectious agent. He searched for an irrefutable infectious link between people who had the disease.
A crucial clue came on March 6, 1982, when the Los Angeles Department of Health got a phone call from a gay man who had previously been interviewed by CDC investigators, as had dozens of GRID victims, mostly in California and New York. The man called from an L.A. hospital, where his lover had just succumbed to GRID.
“There are two other guys here in the hospital with the disease right now, and I know they had sex with my lover,†the man said.
The call was referred to Dr. David Auerbach, an EIS trainee for the CDC, based in Los Angeles. Auerbach met with the informant hours later, and heard a sexual saga that began in October 1979, when five previously unacquainted gay couples shared a table at a benefit banquet.28
The informant and his boyfriend, like the other four couples, had a long-standing but nonmonogamous relationship.
During the summer of 1980 one of the couples threw a backyard barbecue party, inviting a pair they had met at the benefit, who brought with them a gay prostitute. That night all five men had sex with one another. Sometime later, the informant’s lover had sex with a member of the barbecue crowd.
Two months later, two members of the barbecue quintet contracted Pneumocystis pneumonia. A few weeks earlier the informant’s lover had discovered Kaposi’s sarcoma splotches on his skin.
The three men died on October 6, 1981; February 6, 1982; and March 6, 1982.
“Six-six-six, you get it?†the informant asked. “Six-six-six!â€
Moved by the biblically ominous coincidence of sixes, the man had called the Health Department.
Auerbach telephoned Darrow in Atlanta, who took the next flight to Los Angeles.
For several high-paced days Auerbach and Darrow crisscrossed Los Angeles and Orange counties, interviewing the eight surviving GRID patients of the nineteen cases diagnosed in the two counties prior to April 1982. To gain information on the eleven who had died, the CDC investigators sought out family members, ex-lovers, and friends. Many refused to cooperate, but within two weeks the scientists had solid information sexually linking nine of the men.
By April 7, Darrow and Auerbach had established that two members of the barbecue party group had in 1979 and 1980 had sex with two other Los Angeles GRID cases—individuals who hadn’t yet been linked in any way to the rest of the group.
As they crisscrossed Los Angeles that spring day, something eerie happened. Two unacquainted men with GRID independently mentioned a handsome French-Canadian flight attendant with whom they had had sex. The coincidence was striking.
The CDC investigators were further “a
stounded,†they said, when “on the same day the companion of a third case in Los Angeles said that his roommate had had sexual contacts with two friends of this same out-of-California [Canadian] case.â€
Though Darrow and Auerbach went to great lengths to protect the confidentiality of the men they interviewed during the 1981–82 investigation, even destroying all photographs and identifying material, somebody close to the inquiry leaked the Canadian’s name to San Francisco Chronicle reporter Randy Shilts.
And Gaetan Dugas would be, after his demise, vilified and crucified, mistakenly named as the man who personally spread GRID around North America.29 In 1985 Dugas’s photograph would hang in the STD clinic in Lusaka University Teaching Hospital in Zambia, captioned: “The Man Who Started the Epidemic.†Because four of their Los Angeles GRID cases named Dugas as their sexual partner, the CDC investigators designated the Canadian as “Patient Zero.†This would later be mistakenly interpreted as indicative of a primary, causative role for Dugas.
Darrow flew the following day to New York City to interview Dugas, the man’s physician, Alvin Friedman-Kien, having agreed to introduce the two when Gaetan came in for a checkup.
Darrow was struck by Dugas’s candor and swagger. Though Dugas had a few Kaposi’s lesions, he seemed unconcerned. He said he felt fine. And he anticipated sexual encounters in the dozens of cities he was scheduled to fly into over coming weeks.
Dugas matter-of-factly laid out his sexual/disease history for Darrow. By late 1978—Darrow’s study period—Dugas was averaging 250 encounters a year. Between December 1978 and April 1982, Dugas guessed, he’d had sex with about 750 men. He estimated that his lifetime total of sex partners, since he became active in 1972, exceeded 2,500.
During that time Dugas had suffered ailments that weren’t diagnosed as GRID until July 1981. In 1979 his lymph nodes swelled appreciably and he felt as if he had a severe case of the flu. A few months later he came down with Pneumocystis pneumonia and was hospitalized in Canada. By early 1981 Dugas had Kaposi’s sarcoma, and in July 1981 he came under the care of dermatologist Friedman-Kien.
The CDC’s Mary Guinan had interviewed Dugas during the summer of 1981, and his story was already in the agency’s files when Darrow asked Dugas to list as many of his sex partners as he could remember. Dugas had never learned the names of most of his bathhouse partners. But he was able to confirm those four Darrow and Auerbach had discovered in Los Angeles, and add sixty-eight more, including four New Yorkers whose cases then led Darrow to a cluster of men who partied on Fire Island during the summers of 1979 and 1980.
By June 1982, Darrow and Auerbach had gathered enough circumstantial evidence to link forty gay GRID victims to a casual sexual network that spanned New York City, Atlanta, Houston, Miami, San Francisco, and Los Angeles. Darrow presented their evidence to Curran, Jaffe, and other members of the Task Force.30 Curran and Jaffe found it compelling proof that GRID was a sexually transmitted infectious disease, and published the Los Angeles component immediately in the Morbidity and Mortality Weekly Report.
But was it?
Auerbach and Darrow thought they were looking at a disease that rapidly progressed from infection to symptoms, and death. By focusing on the most recent sexual exploits of the men they questioned, the scientists got the impression that, for example, eight members of their study group were infected by Dugas in 1979 or 1980, and developed symptoms within an average of ten months thereafter. They reasoned that GRID was a new disease, and the causative agent had been in the United States only since 1978.
But it would later be clear that the disease’s latency period for gay men averaged over ten years, and healthy white, middle-class men in particular almost never developed symptoms as serious as Kaposi’s sarcoma or PCP within seven to fourteen months of infection, as Darrow and Auerbach had assumed.31
Nevertheless, the cases interconnected so perfectly, with Dugas at the hub, that Darrow and the entire CDC team were absolutely convinced that the disease was due to a sexually transmitted agent. On the basis of those findings, University of Washington clinical researcher Lawrence Corey urged in September that further attention be given to use of condoms to prevent passage of sexually transmitted diseases,32 but Curran was reluctant to go up against the anti-birth control forces in Reagan’s powerful advisory circle without stronger evidence that GRID was caused by a sexually transmitted agent.
Complicating efforts to link GRID cases was increasing evidence that groups of non-gays were coming down with the disease. By mid-1982 the Task Force was convinced that injecting drug users were contracting the disease. Only a minority of them were gay men, and some were heterosexual women. While gay men seemed to be uniquely at risk for Kaposi’s sarcoma, the other prime symptom of the new disease—Pneumocystis—was striking a broader spectrum of human beings. One out of four men with PCP was heterosexual, the CDC reported in June, and of 152 cases closely scrutinized by Curran’s team, 26 were heterosexual men and 8 were women. Twenty-one of the 34 heterosexuals were intravenous drug users.33
A month later the CDC reported that a disease that appeared identical to GRID had broken out among Haitians. Thirty-four cases were described among young male and female adults living in Miami and New York. In addition, the report referred to eleven Kaposi’s sarcoma cases diagnosed in Port-au-Prince, Haiti. Most of the individuals were heterosexuals with no history of intravenous drug use. And in addition to the opportunistic infections already noted among gay GRID sufferers, the Haitian patients experienced profound tuberculosis and toxoplasmosis infections.34 All of the Haitian patients in New York and Miami had recently immigrated from Haiti’s poverty and severe political oppression. Most feared publicity might result in their deportation.
The CDC had actually been informed of the Haitian cases during the fall of 1981, when Drs. Margaret Fischl and George Hensley spotted cases at Miami’s Jackson Memorial Hospital, and Dr. Sheldon Landesman reported treating such individuals at Kings County Hospital in Brooklyn. Jaffe dispatched Belgian CDC physician Alain Roisin, who spoke Creole, to Port-au-Prince, and Roisin was able to confirm that the cases there were identical to those reported by Fischl and Landesman.
An unintended result of the CDC’s Haitian report was a new round of blame. Perhaps, National Cancer Institute physician Bruce Chabner publicly speculated, the disease was caused by a “Haitian virus†that was brought back to the United States by homosexuals. It was suggested that the Caribbean resort had become a favorite of gay Americans during the late 1970s and early 1980s. GRID, some scientists said, might even have originated in Haiti.35
Some North American researchers familiar with the Haitian situation insisted that most Haitian men denied homosexual behavior because of social stigmas and that all the Haitian cases were due to clandestine homosexuality. The fact that a significant percentage of Haitian GRID patients were female was conveniently ignored.36
Darrow knew, from his studies of the gay GRID network of sexual liaisons, that at least one of the New York men was a flight attendant (not Dugas) who frequently flew to Haiti, and other East Coast men acknowledged having vacationed on the island. Dr. Friedman-Kien, who had a large gay clientele, told Jaffe that many New York men vacationed in Haiti because they could buy sex for less than five dollars in the impoverished country, where the average daily wage was less than two dollars.
As for injecting drug users, the CDC knew that several of the 1981 cases had involved men who were both gay and narcotics addicts. These seemingly separate communities had overlaps, and Jaffe privately pictured what he now considered to be an epidemic as a series of circles of varying sizes, overlapping wherever there were people who shared more than one type of behavior that could put them at risk for the disease.37
While no causative agent for GRID had yet been discovered, the uniquely high incidence of the disease among members
of a specific immigrant group prompted finger-pointing. It would worsen with time, spurred by what Haitians experienced as racist views of their culture, their lifestyles, and them selves as individuals. It would, unfortunately, not be the last time a nation and its people felt unfairly blamed as the source of the new disease; indeed, such blame would remain a hallmark of the epidemic for over a decade.
While top federal authorities pondered the significance of discovering GRID among Haitians, the disease turned up in three men born with the genetic blood-clotting disease known as hemophilia. Because they suffered frequent blood loss, the men had received many injections of Factor VIII blood coagulant concentrate. The three men ranged from twenty-nine to sixty-two years of age and came from parts of the country not yet known to be affected by the epidemic: Denver, Colorado; Westchester, New York; a small town in northeastern Ohio.38
Factor VIII was made from the pooled plasma of thousands of donors, so people with hemophilia were particularly vulnerable to contaminants in the blood supply. A typical surgery patient might need six units of transfused blood, donated by, at most, six people. But individuals with hemophilia were exposed to the blood of thousands of people each time they injected Factor VIII. Not surprisingly, they had high rates of blood-borne diseases, such as hepatitis.
The Coming Plague Page 47