On October 26, a study from the science journal Nature debunked the myth of Patient Zero, or the man who was said to be the first carrier of HIV in the United States in the 1980s.
The study, titled, “1970s and ‘Patient 0’ HIV-1 genomes illuminate early HIV/AIDS history in North America,” was the first comprehensive genomic analysis of the emergence and early spread of HIV-1 in North America. Prior to this study, it was said that Patient Zero, whose real name is Gaëtan Dugas, was the person who spread HIV/AIDS to North America.
This groundbreaking study estimates that the origin of HIV/AIDS in the United States was New York City and that Dugas, who was from Southern California, was not the first patient with HIV/AIDS. Dugas, however, was villainized until his death and was even called by the New York Post as “The Man Who Gave Us AIDS.” The case illustrates the power that media has in medical discourse and the importance of remaining critical of information, while also reminding us of the relevance of HIV/AIDS and the ongoing issues regarding it today.
In 1981, a mysterious disease seemed to emerge in gay communities in Los Angeles, San Francisco and other major cities. Previously gay men were getting sick from rare lung infections and cancers. The disease, known as the gay plague at the time, would kill 500,00 people throughout the US during the 1980s. A 1984 study done by The American Journal of Medicine suggested the origin of the disease was Dugas, referred in the study as Patient O, which stood for “outside Southern California.” The O was mistaken as a zero, hence, he is infamously known as Patient Zero. Dugas would later be further publicly disparaged in the 1987 book, “And the Band Plays On” by Randy Shilts.
At the time of its discovery, HIV/AIDS was a deadly disease that could not be treated or cured. Because it was associated with the gay community, a stigmatized group at the time, many people, including President Ronald Reagan, ignored the disease. Luckily, several treatments came out around 1987; this, however, would not fix the epidemic. Often times these patients had to take multiple pills that had major side effects.
HIV/AIDS and all the suffering associated was pointed to one man, Patient Zero. Until Dugas’ death in 1984, the French Canadian flight attendant was wrongly blamed for the epidemic that killed 500,000 Americans. Many news outlets at the time picked on the The American Journal of Medicine study and framed Dugas for the epidemic. According to Medical Director of Northwestern Health Service, Kimberly Seipel-Carrow, this is an example of how the media exacerbated the situation.
“The media blew things out of proportion, said Dr. Seipel. “When you look retrospectively at genotypes and transmission, [it was all] false accusations. It was akin to a witch hunt and people wanted to lay blame. [Dugas] was much maligned as a scapegoat. It's all about perception, the media can change perception.”
HIV/AIDS research and treatment has progressed greatly since those grim times. People living with HIV are able to control the disease with relatively fewer drugs they have to take everyday. With this regimen, many of these people can live as long as those without HIV. However, there are still barriers to accessing proper care, and the stigmas that were pervasive in the 80s still haunt us today.
According to a 2009 study, of the estimated 1,148,200 persons living with HIV in 2009, only about a quarter of them were virally suppressed, which means they were on a regiment that reduced a person’s viral load to undetectable. There were 18.1% who were undiagnosed, and 45.2% were aware of their infection but were not retained in care.
Various barriers to care may be the cause of this high percentage. One of the most significant barrier to HIV treatment is its exorbitant cost. According to the Centers for Disease Control and Prevention, it is estimated that the lifetime treatment cost of an HIV infection is $379,668. From 2005 to 2014, diagnoses increased 87% among young black gay and bisexual men. Men of color, particularly black men, face more barriers to accessing to care because of racism and high quantity of cases. Another major barrier to care is the stigma and the misconceptions surrounding HIV and other STIs. This is especially true amongst young people including university students.
Luckily, Northwestern provides many resources for preventing, testing and treating STIs, including HIV. Students on the Aetna insurance plan can have all their STI testing covered. For students who are not on Northwestern’s Aetna insurance plan and are worried about confidentiality or cost, there are other accessible resources for HIV prevention, testing and treatment include the Howard Brown Center and the Center on Halsted.
Not only does the Health Service offer HIV testing, the clinic can also help students go on post-exposure prophylaxis (PEP) and pre-exposure prophylaxis (PrEP). PEP is a regimen for students who believe they have been at risk of being infected with HIV and can be administered 72 hours after the risky episode.
PrEP, which was only recently approved by the FDA in 2012, is a regimen for a person who is at risk for HIV. Not all schools offer this; two years ago, Northwestern was the only one of 14 schools in the Big 10 schools that offered PrEP to its students. The regimen includes taking a Truvada (emtricitabine/tenofovir disoproxil fumarate) everyday. By taking Truvada and committing to safer sex practices, including using condoms, PrEP can reduce HIV transmission rate by 92%. One of the biggest issue regarding HIV prevention, however, is the lack of conversation about PrEP and the misconceptions about PrEP.
"Without question, more advocacy [for PrEP] is needed,” said Dr. Seipel. “I think that a lot of students are aware of it and in the LGBT community there's been great advocacy and dissemination of information. But I think a lot of students are worried about confidentiality and cost. There is also some element of denial. I think a lot of young people are experimenting with their sexuality and for many reasons might make some decisions that in hindsight they hadn't made."
The Patient Zero case reminds students today to remain critical of news media and of science. It also reminds us that HIV/AIDS is still a topic that needs to be talked about. While the myth of Patient Zero is at last over, the legacy of HIV/AIDS continues.