Patient Zero and the Making of the AIDS Epidemic

Richard A. McKay

• Editore: University of Chicago Press
• Anno: 2017
• ISBN:
  9780226064000
• Argomento: Historia
• Categoria: Historia del mundo

Now an award-winning documentary feature filmThe search for a "patient zero"—popularly understoodto be the first person infected in an epidemic—has been key to media coverage ofmajor infectious disease outbreaks for more than three decades. Yetthetermitselfdid not existbefore theemergence of the HIV/AIDSepidemic in the 1980s. How didthis idea so swiftly come to exert such astrong grip on the scientific, media, and popular consciousness?In Patient Zero, Richard A. McKay interprets a wealth ofarchival sources andinterviewsto demonstrate how this seemingly new concept drew upon centuries-old ideas—and fears—about contagion and social disorder.McKay presents a carefully documented and sensitively written account of the life of Gaétan Dugas, a gay man whose skin cancer diagnosis in 1980 took on very different meanings as the HIV/AIDS epidemic developed—and who received widespread posthumous infamy when he was incorrectly identified as patient zero of the North American outbreak. McKay shows how investigators from the US Centers for Disease Controlinadvertentlycreated the term amid their early research into the emerging health crisis; how an ambitious journalist dramatically amplified the idea in his determination to reframe national debates about AIDS; and how many individuals grappled with the notion of patient zero—adopting, challenging and redirecting its powerful meanings—as they tried to make sense of and respond to the first fifteen years of an unfolding epidemic.With important insights for our interconnected age, Patient Zero untangles the complex process by which individuals and groups create meaning and allocate blame whenfaced with new disease threats. What McKay gives us here is myth-smashing revisionist history at its best.

Chapter One

What Came Before Zero?

In a book about AIDS first published in 1984, Dr. Alvin Friedman-Kien, a New York dermatologist and virologist, reminisced about attempts that he and his colleague, Dr. Linda Laubenstein, had made in 1981 to locate an individual of interest to their investigations of the new disorder:

One of these men, who had died, had had sex with a man who had KS, and who traveled a lot for a Canadian company. Call him Erik. Someone else also knew that Erik had lived in a house on Fire Island where three men had died. So I said, “We’ve got to get hold of him.” Linda said she’d tried to reach him but he’d moved. . . . Then I was asked by Marc Conant and Bob Bolan to go out to the first meeting of the Physicians for Human Rights in San Francisco [in June]. . . . I went out, gave my talk, then sat down to listen to some of the other talks. A doctor came over to me and said, “I have a date tonight with a Canadian who has Kaposi’s sarcoma. Do you think it’s okay for me to go to bed with him?” I just stared at him, then said, “Is it a man named Erik?” “Yes,” he said, “do you know him? Isn’t he a beauty!” I almost fell off my seat. I said, “Could you do me a favor? Give him my hotel number and tell him to call me. Or, if he can’t do that, to contact me in New York in my office.” I went back to the hotel and called Linda and said, “Linda, I’ve located our Typhoid Mary.”1

For Friedman-Kien, the label of “Typhoid Mary”—the name bestowed upon an ill-fortuned Irish American cook whose story will be retold later in this chapter—summed up his view that this individual was spreading disease to his sexual partners. Laubenstein would echo her professional partner’s tone when she spoke with a San Francisco journalist in 1986. In the reporter’s notes for the interview, roughly scribbled as he tried to keep up with Laubenstein’s words, this man was described as a “vector of disease.” The importance that he would come to signify to epidemiologists was also suggested by Laubenstein’s remark that his “‘little bl[ac]k book’ wasn’t little.” When the journalist in question, Randy Shilts, published And the Band Played On in 1987, he identified “Erik” as Gaétan Dugas, a French Canadian flight attendant whom investigators at the US Centers for Disease Control (CDC) had previously labeled as “Patient 0.”2

A collection of oral history interviews published in 2000 featured the reminiscences of physicians who had played significant roles in the American epidemic over the previous twenty years. By this time, Laubenstein had died, but once again Friedman-Kien gave an interview, and again he spoke of Dugas, the only patient to be identified by his full name in that book. Time had not dulled the physician’s recollection, nor his earlier view that Dugas was sowing disease. Once again, he invoked one of the more negative images associated with “Typhoid Mary”: “While he was in New York, he would go to gay bathhouses and have unprotected sex with a variety of people despite the fact that we warned him against it. I once caught him coming out of a gay bathhouse, and I stopped the car and said, ‘What are you doing there?’ And he said, ‘In the dark nobody sees my spots.’ He was a real sociopath. At which point I told a colleague the story. She was enchanted with him, as most people were. I stopped seeing him, I was just so angry.”3 This pair of recollections from Friedman-Kien indicate the breadth of feelings aroused by his interactions with this individual between 1981 and 1982. On the one hand, he describes his excitement of tracking down an elusive patient who might offer insight into a mysterious condition. On the other, he reports feeling such anger and disgust with the patient’s behavior that he ultimately withdrew his services. Friedman-Kien’s telling use of the term “Typhoid Mary” indicates the way in which historical narratives about epidemics and the characters featured in them subtly shaped the mind-sets of those responding to AIDS. It also demonstrates the importance of being aware of these older histories to comprehend the full communicative force summoned by the story of Gaétan Dugas as “Patient Zero.”

A long history of prejudice, fear, and blame directed toward suspected disease carriers preceded AIDS, and the cultural weight of these past occasions contributed palpably to responses to this epidemic on its emergence in the late twentieth century.4 This chapter provides an overview of this general history and of the key ideas and precedents that animated the story of the flight attendant and the labels “Patient O,” “Patient 0,” and “Patient Zero” as their use spread from the 1980s onward. This longue durée approach treads lightly over several hundred years of events and ideas in Western Europe and North America from the late medieval period to the twentieth century.5 Historians tend to be wary of drawing examples from different periods to illustrate an argument, since doing so risks severing the incidents from the original interpretive frameworks that imbued them with meaning. However, as the following pages suggest, other observers have been less concerned about original context when reappropriating and recirculating older ideas, thus it seems justifiable to cast a wide net in this instance.

Five themes emerge in this overview which inform the chapters that follow: plague as divine punishment and the linked rise of scapegoating; fascination with the origins and spread of disease; recurrent fears about deliberate disease spreading; dangerous beauty coupled with defilement and sexual activity; and the challenges posed by healthy disease carriers. In some cases, the incidents to follow—such as the stories of well poisoning and of “Typhoid Mary” Mallon—were well known to participants responding to AIDS in the 1980s and 1990s. Others, such as the tale of the most beautiful fifteenth-century Italian prostitute said to have generated the “French Disease,” were less widely circulated and have only more recently been examined by historians. Nonetheless, they are all included to demonstrate the long history underpinning the impulses to trace contagion, harbor suspicion, and lay blame in times of epidemic. An epigraph from Randy Shilts’s popular book introduces each theme, demonstrating how And the Band Played On both was embedded in and contributed to this intertexual history of epidemics.

Plague as Divine Punishment and the Rise of Scapegoating

“Maybe Falwell is right,” said Gaetan. “Maybe we are being punished.”6

When Moral Majority leader Jerry Falwell expounded his view in July 1983 that diseases such as AIDS were a “definite form of the judgment of God upon a society,” he was certainly not pronouncing a new view. Nor was it unprecedented for him to suggest that it was “perverted” homosexual behavior that had incited this “spanking” from God. Falwell’s viewpoint, that AIDS was a “gay plague,” echoed the published opinions of Republican speechwriter and senior advisor Patrick Buchanan and other social conservatives in the spring and summer of 1983. The explanation was consistent with many centuries of blaming socially disadvantaged groups for the appearance of epidemic disease.7 During these centuries, first in Europe and later in North America, those whose religious, social, and sexual behavior did not meet the prescribed standards of their communities were repeatedly accused of incurring divine wrath. For many people who made such judgments, notions of contagion revealed a clear and unbreakable link between an individual’s moral choices and wider communal responsibility.8

In Western Europe from the eleventh century onward, a trend developed in which various minority groups—“lepers,” Jews, heretics, and sodomites—were repeatedly cast as enemies of the state, to the point that such scapegoating became a permanent cultural fixture of that part of the world. Collectively, societies would come to the consensus that a particular named group was to blame for certain social ills. The members of this group were then systematically excluded from society and faced the loss of their civil rights and, too frequently, the risk of being put to death.9 These categorized groups might be blamed for specific acts or occurences, or for generic, transferable threats and conspiracies. Though in some cases a rumor or conspiracy might initially be linked to a specific historical event, these explanations often evolved over time, serving as adaptable answers for later generations to make sense of new situations of collective hardship.

In 1321, communities in France and several other Christian countries blamed and in many cases executed individuals marked by leprosy for an elaborate plot—involving shadowy foreign powers, secret meetings, and deadly powders—to poison local water sources.10 A generation later, this conspiracy was recycled with Jews as the chief villains when Europe was overcome by the Black Death, reportedly following the arrival in Sicily of twelve plague-infected Genoese ships from Constantinople in 1347.11 At that time, it was widely understood that there could be a separation between the underlying cause of plague—for example, the position of the stars or contaminated air and waters—and the more immediate reason for its spread, such as interpersonal contact. Given the vigorously anti-Jewish attitudes of the time and the devastation of the plague, it is, lamentably, not difficult to imagine how the two theories could have combined into the popular view that the Jews were contaminating well water with poison to spread the pestilence.12

Such water-based plague anxieties date to ancient times. In his account of the fifth century BCE Peloponnesian war, the Greek historian Thucydides discussed the sudden appearance of a deadly outbreak during the conflict’s second year. Though he left speculation about the plague’s origins and causes to other writers, he recorded a story told by residents of the Piraeus, the port district on the outskirts of Athens that was first struck by the pestilence shortly after the Peloponnesians invaded. The residents maintained that their enemies had poisoned the water reservoirs. For an arid region where drinking water was precious and often associated with divine beneficence, the accusation of poisoning a communally shared source of life conveys the compounded horror, fear, and disgust aroused by the double devastation of invasion and plague. The fact that the disease had not seemed to affect the Peloponnesian peninsula to a degree worth recording would only have added to their opponents’ presumed culpability.13 Thucydides’s work was not widely available in Europe when these stories of well poisoning later recirculated. However, other ancient writers including Seneca, whose moral essays did influence medieval thinkers, particularly from the mid-thirteenth century onward, also wrote “of springs defiled by poison, of plague the hand of man has made . . . and secret plots for regal power and for subversion of the state.”14

During the late medieval and early modern period, differences of background and class also shaped perceptions, with travelers and the poor frequently featuring in accounts of plague spreading. In some northern areas of early modern Italy, for example, these marginalized groups replaced the Jews or witches who normally featured in such stories. Wealthier members of society worried that graveyard workers, a group which tended to draw vagrants and criminals in times of pestilence, might attempt to prolong epidemics. Some feared they had ready access to deadly matter drawn from bodies and clothing, which they could surreptitiously scatter throughout unsuspecting neighborhoods.15 Similarly, impoverished linen washers in early sixteenth-century Geneva were accused of deliberately spreading plague-infected ointment in the houses they cleaned in order to kill the inhabitants and then steal their possessions.16 Travelers also implicated local prostitutes in social condemnation. Even before brothels became associated in the late fifteenth century with the spread of the great pox, or the “French Disease”—a sexually transmitted affliction now commonly thought to be syphilis—they faced punitive sanctions in times of plague. It remains unclear whether these sexual sites drew condemnation more for their indiscriminate welcoming of strangers or for encouraging divine displeasure to fall on a society that permitted fornication.17

At times, early modern Europeans grouped sodomites with prostitutes as moral offenders to be marked as different and expelled from the community along with other types of corrupt matter in times of disease.18 Indeed, historical evidence suggests that in northern Italy both prostitutes and sodomites joined Jews in being required to wear yellow to warn other citizens of their suspect moral and public health status.19 The capaciousness of the word sodomy also reflects the conjugation of sodomites and prostitutes in the popular imagination: in some parts of early modern Europe, the term defined a variety of sexual activities between men, while in others it included all non-procreative sexual acts between men, women, and, more rarely, animals.20 Sodomy itself was viewed as contagious by such medieval authorities as Albertus Magnus; spread from person to person, it was very difficult to treat and particularly afflicted the rich.21 Northern Italian religious authorities—in Venice, Lucca, and Florence, among other locations—viewed the visitation of the Black Death in the fourteenth century as a consequence of unpunished sodomy.22 They were thus prepared to blame the arrival of a new disease at the end of the fifteenth century in a similar way. The great pox, erupting in that region during the lead-up to the Battle of Fornovo in 1495, would famously be blamed on many diverse groups—chiefly the French, but also Italians from Naples and Spanish Jews, with fingers pointed as far away as the Indies and Ethiopia.23 As the disease spread over the next century, some, such as the Lucchese, linked it specifically to sodomitical practices.24 Such linkages were solidified by a papal bull issued in 1566 that singled out sodomy as a chief cause of God’s wrath.25

Christian responses to plague in late medieval and early modern England demonstrated similar attempts to understand the reasons for God’s displeasure. While some Christians stressed the role of providence, others sought to intuit the offensive provocations and then act decisively, aiming to root out the sinners or social disorders to eliminate the risk of pestilence and other div...