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Stigma Around HIV Makes A Comeback, Survey Finds

Brett Dahlberg
Trillium Health Innovation Chief William Valenti says successful HIV and AIDS education needs to meet young people on platforms they're already using, like dating apps.

As the number of new HIV cases in New York continues to fall, a report from the pharmaceutical company Merck has found that stigma toward the infection in younger generations is growing. 

More than a quarter of HIV-negative millennials have avoided hugging, talking to, or being friends with someone with HIV. Almost a third said they would prefer not to interact socially with someone with HIV, Merck found in a survey of nearly 1,600 Americans between the ages of 18 and 36.

It may seem like a counterintuitive trend, but people working in HIV education and treatment said it’s not surprising.

Cameron Kinker, a community engagement coordinator for the international Prevention Access Campaign, said the youngest generation of adults today was not yet alive at the height of the AIDS epidemic in the mid-1980s. He said that distance can provide a breeding ground for misinformation.

“I’ve been aware that a lot of this is in the ether, but actually having the data points will help us come up with new opportunities to educate people,” Kinker said.

Credit Brett Dahlberg / WXXI
Sam Jett, a prevention navigator at Trillium Health in Rochester.

Sam Jett, who works as a prevention navigator at Rochester’s Trillium Health, said stigma is generational. “It gets passed down, and when you don’t actively counter it, it gets reestablished in every generation.”

Researchers stressed that HIV cannot be transmitted through casual contact or through saliva.

Peter Sklar, Merck’s director of clinical research, said that many doctors need to be better at informing patients about HIV.

“We have a lot of work to do to get clear messages out there,” Sklar said. “We need to not just be telling people information but making sure we deliver it in a manner that sticks.”

William Valenti, Trillium Health’s co-founder and current innovation chief, said communication needs to meet people where they are.

“What we’re talking about is giving people information that is in bite-size pieces, and also in ways that resemble how people communicate. This is the era of the smartphone,” Valenti said. “Hookup apps, meeting apps, dating apps – that’s how people communicate. We have a large digital initiative that gives people HIV prevention information using dating apps."

Valenti said one of the most important messages for people to hear is “U equals U”: Undetectable equals untransmittable.

That means when the HIV virus count drops so low in a person’s body that it can no longer be detected, it can also no longer be transmitted.

But Valenti said that requires taking medication correctly and consistently, which can be difficult.

“There’s more to taking medicine than my handing the patient a bottle of pills and saying ‘Come back in a month,’” he said. “There are social issues, such as mental health, housing, health insurance, employment issues, transportation, family issues – the kinds of things that determine whether a patient is able to stay on treatment as directed.”

Part of Jett’s job at Trillium is working to keep patients on track – or to stop them from becoming patients in the first place. 

Jett said the continued stigma around HIV makes that difficult.

“Stigma around, like, HIV, or even, just, like, sex and sexual health in general, will keep people from seeking education, seeking services – a lot of times out of fear.”

Jett works to get people connected with doctors to help them manage infections, and also to help people use products that reduce the risk of transmission.

“We’ve got our condoms – internal and external condoms – we’ve got our lube. We’ve got all sorts of good stuff.”

Because stigma is generational, Jett said, he hopes that by breaking it down in younger generations today, he can prevent its spread in the future.

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