By Megan Fitzgerald Dunn
If you were to walk into a Starbucks and eavesdrop on a table of high school students chatting over iced caramel macchiatos and cold brews, you’d hear a lot of things. But, discussion of HIV would likely not be among them.
Amelia Korangy, director of external affairs strategy and programs at ViiV Healthcare, hopes her organization can help change that. As the only pharmaceutical company focused solely on HIV, ViiV is determined to raise HIV awareness and help end the HIV epidemic.
“I think the biggest misconception about HIV is that it’s not an issue and it is an issue,” she said. “I think the silence around HIV is a public silence, but this has impacted millions of people who don’t need to live in silence. There doesn’t need to be that stigma related to it.”
Silence is not the only challenge in addressing HIV prevention and patient care.Ideas about who HIV impacts are outdated.
“I think the coverage and the urgency and the information that gets shared around HIV—we just need to bring it to 2024,” Korangy said.
According to the latest figures from local government officials, Miami-Dade County has the highest HIV incidence rate in the U.S. Of this rate, the majority of new HIV cases among women stemmed from Black women.
Yet, HIV isn’t something you are likely to hear discussed, especially among women.
“There are so many women living with HIV who are experiencing isolation and stigma and shame because there’s not a whole lot of conversation and, for a long time, there haven’t been many networks that women could tap into to talk about their experiences around HIV,” Korangy said.
Among women diagnosed with HIV in 2021, Blacks accounted for 60% of cases, according to the Florida Health Department in Miami Dade County.
The impact of HIV also extends to young adults in South Florida. According to the health department, among females with a new HIV diagnosis locally, the diagnosis rate was highest among 20- to 39-year-olds. Korangy said, while HIV does impact women in South Florida, the majority of people locally who are newly diagnosed with HIV are young Black gay men.
“It’s really disproportionately impacting high school students and folks 20 to 34 make up more than half of all new diagnoses and people living with HIV in Miami,” she said. “So, it’s really affecting young queer people and Black women.”
When it comes to HIV prevention and care Korangy said that where you live matters. People are just more likely to encounter HIV if they live in South Florida.
“It’s not because any person or persons are doing anything wrong. It’s because that’s how the sexual networks are locally,” she said. “There are a lot of people living with HIV, many of whom don’t know it or are not able to access the care that they need.”
To help combat this, ViiV Healthcare has invested in raising awareness and community programs across South Florida. A recent initiative called Risk to Reasons is reframing HIV prevention for women because many women don’t even see themselves as at risk.
“There’s been a real call to sort of reframe risk and find a way to talk to women about HIV prevention that makes sense,” she said. “Instead of focusing on the risk to really think about the motivating reasons that women have for HIV prevention and to talk about those reasons. It’s a shift in ‘What are your risky behaviors?’ to ‘What matters to you? What are your reasons?’ Maybe where you live is a reason, the way you like to have sex may be a reason, your desire for sexual health may be a reason. Women have different reasons for HIV prevention so we’re trying to increase awareness locally about that.”
Korangy said that ViiV Healthcare has invested in different networks of people living with HIV—social networks, supportive networks, formal networks, informal networks—to break down the isolation and silence that many women living with HIV experience. It has also invested in cultural interventions, such as creating and funding art, as well as funding different organizers.
“This is an issue that really affects women and really affects the queer community and so we’re using the strength and creativity and the supportive networks of the queer community to get the word out,” she said.
The company’s advocacy efforts also include the creation of a podcast called Being Seen, which, according to Korangy, has reached millions of people.
“It is about HIV and identities and being seen,” she said. “It’s a way to share information that feels like more than just a PSA but is a part of people’s lives and understanding of where they live.”
Because local advocacy and community organizations play such an important role, Korangy said that ViiV has invested almost $10 million over the last couple of years in community-based organizations that are building supportive networks and helping connect women to HIV prevention and care.
“The voices of people living with HIV locally are strong and there are platforms to share different people’s stories around living with HIV,” she said. “I think it goes a really long way to helping people understand a little bit more about how HIV can impact them and their families and their communities.”
Korangy wants women living with HIV to know that they are not alone. She has been in many situations where women had never had the opportunity to connect with other women living with HIV. They thought the disease only impacted them and they felt totally alone, she said.
“And that’s not true. It’s so important for folks to know that there is support and they are not alone. There are thousands of women experiencing the same thing.”
For a company whose mission is to leave no person living with HIV behind, the hope would be that one day, the public silence around HIV is not because of a lack of awareness or stigma, but because the HIV epidemic has ended—for all.
