Health experts and artists discussed the need to change the narrative in popular media around HIV/AIDS to avoid stigma and provide true representation in a panel last Friday hosted by Harvard Medical School in recognition of World AIDS Day.
The panel, titled “Portraying AIDS in the Media: How Far Have We Come?”, was sponsored by HMS’ Media, Medicine, and Health program and moderated by physician and award-winning showrunner Neal Baer. The event featured guests actress Gloria Reuben, director Paris K.C. Barclay ’79, artist Kia LaBeija, Yale School of Public Health professor Gregg Gonsalves, and HMS professor Joia S. Mukherjee.
To open the discussion, Gonsalves, who studies epidemiology, showed an advertisement for an HIV drug, Dovato. The ad depicted people with HIV living a happy life while using the medication. Despite the commercial’s joyful appearance, Gonsalves and the other panelists agreed that these media portrayals erase the complexity of HIV/AIDS.
“We have a whole set of issues that we need to deal with, that are obscured by this happy-clappy version of the HIV epidemic that is perpetuated night after night on network television,” Gonsalves said.
“How do we build a critical media discourse about the AIDS epidemic moving forward?” he added. “We didn’t learn the lesson of HIV, we didn’t learn the lesson of Covid, we don’t get three strikes. Three strikes, and we’re out.”
To demonstrate the necessity of “talking, moving, telling your story, getting out there,” Barclay referenced “Pedro,” a film he co-wrote in 2008 about Cuban American television personality Pedro Zamora who died from complications due to AIDS.
Barclay retold Zamora’s story to prove that “even one person who is telling their truth can make some change,” and used the film as a critique against the narrative of silence around Zamora’s illness and the “lie of reality coverage.”
“I wanted to debunk a little bit of what they had done in the real world, which is to disguise and sanitize his story,” Barclay said. “They didn’t show how ill he was.”
Mukherjee, an associate professor of Global Health and Social Medicine at the Medical School, also touched on the power of documentaries in illustrating HIV/AIDS.
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“That’s what we’re fighting for — to tell those stories in patients’ own words,” she said.
Reuben, an Emmy Award-nominated actress, said she aimed to portray the stigma faced by individuals living with HIV when she played Jeanie, an HIV-positive character in the popular television series “ER.”
Reuben explained that depicting a character who felt shame and embarrassment from testing HIV-positive helped show the broader stigma in society faced by individuals living with HIV.
“The shame, the secrecy, and stigma. Those are killers,” Reuben said.
She added that combating the stigma of living with HIV is critical to saving the lives of individuals who fear seeking treatment out of stigma — something that can only be accomplished through “the awareness, the access, and the treatment,” Reuben said.
LaBeija, an artist, storyteller, and New York native, spoke firsthand about the need for representation in the media to truly depict the experience of HIV. She developed HIV through perinatal transmission from her mother and has been living with HIV her entire life.
As a long-term survivor of HIV, LaBeija said, her struggle with the illness was “a completely different experience” compared to those who acquired it later in life.
“Sometimes when I sit in rooms with other people living with HIV, I feel a little isolated,” LaBeija said.
As she grew older, LaBeija met others who were similarly diagnosed with HIV perinatally — interactions, she said, “blew my mind.”
“To feel that, my isolation and my grief, and all that time that I felt alone — there were so many others, just like me,” LaBeija said, adding that the experience made clear to her that shifts in the narrative around HIV/AIDS were necessary.
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LaBeija referenced the more than 14,000 children born HIV-positive from the late 1970s to early 1990s, underscoring the importance of telling these stories.
“There are way less babies that are born with HIV, which is beautiful and a miracle,” LaBeija said. “But those babies that were born, those babies that are not here, they’re still stories that are just completely lost.”
LaBeija said telling her story and fighting for the representation of people who are HIV-positive is critical to ensure support and inclusion of individuals living with the illness.
“If you don’t tell your story, someone else will tell it and they’ll tell it wrong,” she said, citing a proverb she heard early in her life.
