Health

‘I am proud of the community I am part of’: HIV Planning Council debuts anti-stigma campaign

"I’m a proud gay man who is living with HIV, and I never thought as a young person that I would ever say that."

Tim Young, Ryan White Planning Council committee chair, speaks about his experience being HIV positive at Boston City Hall on July 28. Screenshot of video

The world has now lived through a global pandemic which many have compared to the early AIDS epidemic, but misunderstanding about the disease, and the virus that causes it, persists. So, Boston recently took steps to reduce stigma about HIV in local communities.

On July 28, Boston’s Ryan White Planning Council debuted a video and hosted a panel discussion as part of the “Someone You Know & Love” campaign to reduce stigma around HIV. Supported by family, friends, and a good crowd, four openly HIV positive panelists shared their stories and experiences of navigating the world with the virus.

Though the campaign is new, this work is not. Boston has received a $15 million grant annually since 1990 from the federal Ryan White HIV/AIDS program, meant to “provide care and treatment services to people with HIV to improve health outcomes and reduce HIV transmission among hard-to-reach populations.” The program’s namesake, Ryan White, was diagnosed with HIV/AIDS at 13-years-old following a blood transfusion to treat his hemophilia. His story went national when he was barred from attending school in Indiana.

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Boston’s Ryan White Planning Council decides how those funds should be used.

“A couple years ago we took on an additional project to create a really interactive and visual campaign to eliminate HIV stigma in the community and put a name and face to the people living with HIV today,” Liz Koelnych, planning council support manager, said at the event. “It’s very interesting to have done this in the past year and a half and see the parallels between COVID-19 and HIV, and to hear from long-term survivors how much this feels like the 80s and 90s.”

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Koelnych called the film a “true celebration of spirit,” and noted the life experience in the room. Right now, the video is available online as part of the recording of the event (it begins at 11:53 and lasts around 8 minutes).

Like White, panelist and council member Darren Sack was diagnosed with HIV in the 80s after receiving treatment for his blood disorder. Sack was 12-years-old when he received the initial diagnosis and his parents were told he wouldn’t make it to 16. He’ll be 52 this September.

“I have no problem with birthdays and falling apart and getting older because I truly never thought I would be here,” he said.

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Larry Day shared his experience of stigma while navigating the healthcare system as a person of color, drug user, and HIV-positive person.

“When you add on top I was an active heroin user, that complicated issues,” he said. “People did not want to deal with me because they felt I was just a junkie and I was going to die anyway.  The compassion and energy you feel and hear now about the opioid epidemic was something that didn’t exist 30 years ago. If you were an active addict, you were a junkie, you were a thug, people weren’t crying for you on TV, the governor didn’t make speeches and put money into programs…that only began to happen when the complexion of that epidemic began to change.”

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Asked about media representation of HIV, Tim Young, the council’s Consumer Committee chair, praised actor Billy Porter for sharing his HIV-positive status and going on to win an Emmy.

“I am proud of the community I am a part of,” Young said. “I’m a proud gay man who is living with HIV, and I never thought as a young person that I would ever say that – one that I was HIV positive and two that I would be proud to be a person in this community, supporting and loving one another, growing, educating, and changing the lives of people around me.”

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