Under the Gargoyle: Recipe for Disaster

August 1, 2009

Early in the coverage of the outbreak of H1N1, news sources reported on an alleged "Patient Zero of the Swine Flu Outbreak," a smiling and playful boy from Mexico (four or five years old, depending on the source), who had mysteriously tested positive for the virus. The articles reported that he was—or may have been (again, depending on the source)—the first recorded case of the virus and that he might therefore shed light on its origins. Subsequent evidence did not support the claim, but the use of the term "Patient Zero" is a troubling feature of the coverage of outbreaks in the American media.

Journalist Randy Shilts first put the term "Patient Zero" into public circulation in his 1987 account of the early years of the HIV pandemic, And the Band Played On. "Patient Zero" was the name he gave to Gaetan Dugas, the male flight attendant whom he misleadingly placed at the center of the AIDS epidemic in North America.

"Patient 0" is the term epidemiologists use to designate the index case of an epidemiological study. In this case, the flight attendant became the starting point from which researchers at the Centers for Disease Control tracked sexual contacts among men suffering from the syndrome. The study was designed to test their hypothesis that a sexually transmissible agent was causing the syndrome.

Shilts transformed this "patient 0" into "Patient Zero," a monstrous figure whom Shilts depicts (after his death) as intent upon spreading the infection. If "patient 0" had an epidemiological role to play, "Patient Zero" had an important part in the telling of the story. As one frustrated CDC investigator complained (in Shilts' book), the enemy (HIV) "didn't even have a name." The epidemiological "patient 0" helped to identify the agent, but Shilts' character gave it a name and a face, making the flight attendant a scapegoat for what I call "the outbreak narrative."

The outbreak narrative is triggered in the media every time a new, dangerous disease with person-to-person transmission emerges; it is burned into our collective imagination by its continual retelling in the media and in popular fiction, nonfiction, and film. The story begins with an outbreak of a deadly communicable disease, typically in a remote location, chronicles its spread into the urban centers of Europe and the U.S., and features the heroic work of epidemiologists and researchers to understand the disease and contain the threat. It pits a dangerous and wily microbe against scientific medicine and epidemiology in a potentially apocalyptic battle over the fate of humanity.

Shilts' "Patient Zero" and his many heirs (the term surfaces with every outbreak) are part of that story. Scientists personify the microbe metaphorically, but "Patient Zero" is its human counterpart. In epidemiological horror novels, it is not unusual for a virus to take over the body of an infected human being. The epidemiologists who are the protagonists of Chuck Hogan's 1998 novel, The Blood Artists, dub their virus/human antagonist "Patient Zero." Shilts' character is the prototype of these characters, who give the experts a human being rather than a microbe to fight.

Shilts' Gaetan Dugas refuses to believe—or perhaps does not care—that he may be infecting his sexual partners with a deadly disease. Yet, Dugas was dead by the time Shilts' book appeared. We will therefore never know how well he understood what the CDC investigators were telling him, what he did or did not refuse to do, and why. Violating an individual's rights and freedoms has consequences as well, but the outbreak narrative obscures them.

The outbreak narrative presents the problem of a pending epidemic in predominantly medical terms, and its solution combines treatment (drugs), prevention (vaccines), and containment (quarantine). All are important. What is missing, however, is a broader social view of the problem.

Public-health experts such as Paul Farmer '82 have argued that poverty acts as the most efficient vector in the spread of communicable disease. Malnutrition and illness, as well as inadequate clothing and shelter, make people more susceptible to disease. Lack of access to adequate health care not only produces people who are thereby more susceptible, but also fuels the outbreak once it has begun, since people cannot seek treatment or preventive measures. As a disease moves through a susceptible population, it can become more virulent.

The World Bank estimates that a pandemic could cost more than three trillion dollars. Surely it makes economic, as well as humanitarian, sense to address even some of the most basic issues surrounding access to health care worldwide.

We need to be mindful of the effects of the outbreak narrative. It clouds the terms of important debate on the problems raised by communicable-disease outbreaks. It minimizes the dangers of failing to address the causes of global poverty and inadequate access to health care. It stigmatizes places, groups, and behaviors as it demonstrates the power of stories to define problems and offer solutions.

But stories can be changed. H1N1 has so far yielded neither a devastating pandemic nor a true "Patient Zero." Journalists and medical experts have described it as possibly a "trial run." Perhaps, then, this recent outbreak offers the opportunity to change the story—and the practices and policies it generates—to prepare more effectively for the anticipated disaster.

Wald is professor of English and women's studies and author of Contagious: Cultures, Carriers, and the Outbreak Narrative.