When It Comes to Young People & HIV/AIDS, Stereotypes & Misinformation Still Persist

Marshall Bright

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For members of Generation Z, the AIDS crisis of the 1980s and 90s is something they maybe learned about in textbooks. Certainly the worst of the early days of the HIV/AIDS epidemic in the United States happened well before they were born in the late 90s and early 2000s — and a lot has changed since then. By the time many of them were preteens, the FDA had approved PrEP, or pre-exposure prophylaxis, a drug that can reduce the risk of contracting HIV by up to 99% percent. Thanks to medication, many HIV-positive individuals are also able to manage an “undetectable load,” which is often short-handed to “undetectable,” making it almost impossible for them to pass on the infection. And today, life expectancy for those infected with the virus in the U.S. is close to normal as long as they’re treated early.

Those facts would have been unthinkable 30 years ago — but they also require a huge amount of awareness: early treatment, PrEP, and managing an undetectable load require knowing your status and risk and being proactive about it. And that’s where today teens are falling short: Just ahead of World AIDS Day on December 1st, a new survey has found that both millennials and Gen Z are lacking basic knowledge when it comes to HIV and AIDS. That data is especially troubling when coupled with the fact that diagnosis rates, while staying stable across all age ranges, are actually surging in young adults — accounting for around half of all new diagnoses.

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The survey, conducted in partnership with the Prevention Access Campaign (PAC) and Merck, asked a diverse group of young adults ages 18-36 about their perception and knowledge of HIV. Both millennials (23-36) and Gen Z (18-22) showed gaps in knowledge, but the trend was worse for Gen Z respondents. It also found a low rate of condom use for STI protection (54% reported not using them) despite an overwhelming fear of HIV infection. Shockingly, the survey also revealed that many old stereotypes of HIV still persist from the 80s: 30% of respondents also said they would rather not interact with someone who is HIV positive.

Because this survey only talked to adult members of Gen Z, it left out Gen Z’s youngest members. To see if the same lack of knowledge was true for them as their older peers, we reached out to SheKnows’ Hatch kids, a group of teens and preteens that we have been following for the past five years.

First, the good news: none of them have any fear about interacting socially with someone with HIV.

“I would 100% be comfortable interacting with someone living with HIV,” says Reed, 14. “Being HIV positive or negative should have no effect on how someone is treated by others.” All our teen respondents agreed, expressing confusion at the idea that someone would avoid hugging someone who is HIV positive.

But the Hatch kids also acknowledged that they don’t know a lot about HIV or AIDS because it doesn’t feel like an issue that is relevant to their community, noting that they’re not aware of anyone they know personally having the virus. It also makes the idea of contracting the disease feel unlikely, though several teens took pains to note that they plan on using protection and practicing safe sex to minimize the risk of exposure to all STIs. (Yay!) But because they also aren’t aware of anyone in their community with the disease, a lot of their knowledge comes from media.

“I think that HIV/AIDS seems a lot scarier than some other STDs, because of all the depictions of AIDS in movies, TV shows, general pop culture and media,” says Reed. Another teen, Jack, 14, spoke about the influence that seeing the musical Falsettos, about the early days of the AIDS crisis, had on him. But that also points to a larger problem: so much media about HIV and AIDS was created in the 80s and 90s. Fewer TV shows or movies show young people taking PrEP, for example. One respondent even said the only treatment he was aware of for HIV without googling is AZT. (AZT is indeed still a commonly used drug for HIV, but it was originally prescribed as a single drug. Today, it’s viewed as largely ineffective on its own and is almost certainly part of a drug cocktail for suppressing the virus.) At least one knew what PrEP was, which may have to do with aggressive public health campaigning to make people more aware of the drug.

While these kids are young and still have a lot of learning to do, it can’t come soon enough: nearly half of youth between 15-19 have had sex, according to Planned Parenthood. Educators and parents are putting kids at risk by failing to discuss the reality of HIV and AIDS in the 21st century. As the kids in Hatch have shown, Generation Z is more than capable of understanding and tackling difficult issues. It’s up to the adults in their lives to give them the information they need.

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