It’s been 35 years since the first case of HIV was reported and America was plagued by the first cases of the AIDS epidemic. Yet long after the end of those early days of the epidemic, gay and bisexual men still are often stereotyped as the primary transmitters of the disease in the United States. Stigma afflicts our community, perhaps even more than the virus itself.
The early foundations of this myth were cemented in our collective consciousness by the creation of "Patient Zero" aka Gaétan Dugas. Dugas was identified as Patient Zero in Randy Shilts’ bestseller And the Band Played On. Originally meant to highlight political wrangling and the government’s unresponsiveness to the epidemic, the publicity campaign for the book ended up focusing on Dugas specifically, making him the sole person of blame for bringing the virus onto American soil, and sealing his reputation as the “man who gave us AIDS.”
As Plus reported two years ago however, "Shilts' former editor admitted the book needed a literary device and had encouraged Shilts to create the epidemic's first 'AIDS monster.' The athletic sex life of Gaétan Dugas fit the bill nicely, and served as a symbol, deliberately or not, for everything people feared about gay sexuality. Dugas had already died in 1984, never having the opportunity to respond to the book's claims."
But recent findings show it to be a mistake.
DNA evidence has emerged proving that HIV arrived stateside long before Dugas became HIV-positive. Research printed in the journal Nature show the strain of HIV responsible for nearly all AIDS cases in the United States, arrived on our shores via Zaire and Haiti, around 1971 — a decade before Dugas’ blood was ever sampled.
The idea of Patient Zero was an interesting concept, both for the media and for the LGBT community. After all, it feels good to have a scapegoat. It does not, however, feel good to be the scapegoat. By focusing solely on the man and his sexuality, rather than the virus itself, the media birthed a defamatory point of view on gay life, that gay sexuality was unclean and promiscuous and thus punishable by AIDS.
“The media was all too eager to cast blame on a single person, rather than reflect on the stigma they were creating and the lack of political will to actually do something about the disease,” says Kelsey Louie, CEO of Gay Men’s Health Crisis. “The stigma created in the past is still strong today and prevents many from talking about HIV to educate themselves, getting tested for HIV for fear of being labeled, and even seeking treatment if they are positive. The Patient Zero storyline also fostered the belief that HIV was a gay disease, when we now know that anyone can be impacted by HIV, regardless of your sexual orientation.”
As Robert M. Grant, an AIDS researcher at the University of California, San Francisco, told the New York Times, “No one wants to be the Patient Zero of their village… Just because you are the first to be diagnosed doesn’t mean you started the epidemic.”
Stigma remains HIV’s most potent side-effect. Thirty-five years ago, activists like Larry Kramer, Peter Staley, Larry Mass, and Edmund White founded Act-Up and fought to end the epidemic and someday find a cure. Their mission was to rattle the very government, which seemed to sit back and watch hundreds of thousands of their citizens die. If it weren’t for them, we would not have the medical breakthroughs we have today. You can have a normal, healthy life as an HIV-positive person — a dream realized.
But even though HIV is a manageable disease, the epidemic is still real, Louie tells Plus. It’s important to have HIV-positive role models like Javier Munoz to remind the world it’s still here. Above all, the fight against stigma is a testament of strength to the human spirit. “We have learned that the human spirit is resilient,” Louie adds. “In the midst of a plague, where friends and lovers were dying and the institutions of power that everyone assumed would respond sat paralyzed, individuals like Larry Kramer, and others, sprang into action to demand a response and to save lives. When politicians refused to meet or even utter the word AIDS, or when the media refused to write about the plague, they kept fighting until they saw action. That is resiliency.”
At the end of the day, all anybody can do is find the courage to be resilient. Patient Zero was proven innocent after nearly four decades. Now it’s time for us all to exonerate ourselves of stigma.