Researchers Debunk the Myth of Patient Zero in 1980s AIDS Crisis

In the 1980s, people had just began to notice a disease that appeared to be sweeping the nation: AIDS. This new disease provoked a panic in people, deriving largely from dread of the unknown. A combination of fear, and misinformation provided by the media led to the crisis, and it wasn’t long before people started to look for someone to blame; this person was Gaétan Dugas, who became known as Patient Zero. Now, over 30 years later, researchers from the University of Cambridge have proven that Dugas was not, in fact, the first known AIDS case and have dug deeper to discover what led to the widespread myth of “Patient Zero” and the worldwide defamation of Dugas.

In a recent press release, Dr. Richard McKay, a Wellcome Trust Research Fellow from Cambridge’s Department of History and Philosophy of Science, said, “Gaétan Dugas is one of the most demonized patients in history, and one of a long line of individuals and groups vilified in the belief that they somehow fueled epidemics with malicious intent.”

Dr. McKay has done extensive work on how the concept of “Patient Zero” became realized. Over the years, the term has come to mean the first case behind a whole range of outbreaks and epidemics and the media continues to use it as such. However, McKay’s research provides insight into how the term originated, which appears to be by accident.

The Origin of “Patient Zero”

In 1982, the Centers for Disease Control and Prevention conducted a study that consisted of several interviews with gay men who had AIDS and were living in Los Angeles. The researchers aimed to acquire the names of all of the men’s sexual partners. As the study went on, the researchers were able to establish what they considered to be links, or connections, among cases. One such connection that stood out was Case 057, Gaétan Dugas. Dugas, a French-Canadian flight attendant, was found to have had sexual partners residing in New York who had developed AIDS at a later date than he did.

The AIDS patients were identified through the use of a coding system, which consisted of the city that the case came from followed by a number that indicates the sequence in which symptoms presented; for example, “LA 1, LA 2, NY 1, NY 2,” and so on. So, how does Case 057 fit into this equation? Within the Centers for Disease Control and Prevention (CDC), this particular case became referred to as “Out(side)-of-California,” which became “O” for short.

Dr. McKay explains, “Some researchers discussing the investigation began interpreting the ambiguous oval as a digit, and referring to Patient O as Patient 0. ‘Zero’ is a capacious word. It can mean nothing. But it can also mean the absolute beginning.”

According to the press release, more than 65% of the men interviewed admitted to having over 1,000 sexual partners over the course of their lives and 75% reported to having over 50 sexual partners in the past year alone. However, many of them could not remember the names of their partners. Case 057 was an exception; Dugas was able to provide CDC researchers with over 70 names of his sexual partners spanning the course of the past three years. In addition to this information, Dugas provided the researchers with plasma to undergo further analysis. Dr. McKay feels that, through the combination of having a memorable name and being the case that was able to provide the most information regarding sexual partners, Dugas found himself at the epicenter of the AIDS crisis.

In 1984, the CDC study had been published, but Dugas did not live to see it. Upon seeing the link amongst the cluster of cases, “Patient Zero” was born out of media speculation.

The Band’s Conductor: Randy Shilts

Soon, the AIDS epidemic was not only making headlines, but entire novels were being written on the topic. Randy Shilts, a journalist, published a book entitled And The Band Plays On: Politics, People, and the AIDS Epidemic, where he set out to “humanize the disease,” by giving it a face.

Dr. McKay commented, “To Shilts, Dugas as Patient Zero came to represent the disease itself.”

In an article, Dr. McKay makes a critical historical analysis of Shilt’s book and the role it played in vilifying Dugas, as well as embedding the idea that Dugas was recklessly spreading the disease with a kind of malicious intent.

At the time of the study investigators were aware that people with AIDS might not present with symptoms until months after infection but it wasn’t until 1987, five years later, that it became known that those infected with AIDS might not present with symptoms for a number of years, a fact that takes away from any attempt to establish a real depiction of any kind of sexual network.

Debunking a 30-year-old Myth

The latest study, conducted by Michael Worobrey, PhD, from the University of Arizona, consisted of a comparison of eight other blood samples that had been archived since the 1970s with Dugas’s blood sample. The researchers found that AIDS may have emerged from a past epidemic in the Caribbean and may have reached the United States as early as the 1970s. In addition, according to study authors, they “found neither biological nor historical evidence” supporting that Dugas was, in fact, the first US case.

Dr. McKay describes the term “Patient Zero” as “infectious” in that it has now become a term that has been adapted to “make sense” of a range of epidemics. Study authors predict that even with the myth debunked, the term, and the need to blame people for outbreaks, will remain.

However, Dr. McKay concludes, “It is important to remember that, in the 1970s, as now, the epidemic was driven by individuals going about their lives unaware they were contracting, and sometimes transmitting, a deadly infection. We hope this research will give researchers, journalists and the public pause before using the term Patient Zero. The phrase carries many meanings and a freighted history, and has seldom pointed to what its users have intended.”