HIV/AIDS Stigma and Lack of Knowledge is Common Among Millennials and Gen Z, Survey Shows

The start of the HIV/AIDS epidemic in the 1980s led to misinformation fueling fear about the conditions. Now, the number of people living with HIV is tapering off, but it seems misconceptions are once again widespread. The survey’s results appear in Merck and the Prevention Access Campaign’s Owning HIV: Young Adults and the Fight Ahead and reveal the gaps in education and information millennials and Gen Z-ers have about HIV/AIDS. This lack of knowledge appears to be perpetuating the stigma.

Nearly 30% of HIV-negative millennials in the sample of nearly 1,600 young adults in the U.S. reported having avoided hugging, talking to or being friends with someone they knew was HIV-positive. Almost one-third said they’d prefer not to interact socially with someone who is HIV-positive. Of those living with HIV, 90% agree that someone may avoid disclosing their illness because of the fear of losing friends or family, or experiencing abuse.

When the HIV/AIDS crisis first erupted, doctors, governments and the public knew little about HIV and how it was spread. Research found that the virus — which attacks the immune system — could not be spread by casual contact like touching or kissing, but could be spread through the exchange of fluids like blood and semen. Knowledge about safe sex and the dangers of sharing needles have led to better prevention of the virus, while treatments like antiretroviral therapy (ART) have allowed people who are HIV-positive to live longer and even nearly eliminate the chance of them spreading the virus to others through sex.

Millennials (respondents aged 23-36) and Gen Z-ers (respondents aged 18-22) are known for being the first generation with the internet at their fingertips from childhood. But with a dearth of information now available and widely accessible, young people still are misinformed about HIV and AIDS.

It is likely this misunderstanding of the conditions is a result of them being less commonplace, the results suggest. The lack of knowledge appeared to increase as the respondents got younger. More than 40% of HIV-negative Gen Z-ers, those furthest removed from the height of the AIDS crisis in the 1980s and ’90s, reported not being informed at all, or being only somewhat informed about HIV and AIDS. Comparatively, that number decreased to 23% in the millennial age group. Regardless, HIV still is far from being stamped out. According to Merck’s study, young people now make up most of new HIV diagnoses.

Even those with HIV demonstrated some misunderstandings about how to manage the virus. Only 31% of HIV-positive respondents reported they knew that the term “undetectable” meant the virus was no longer sexually transmittable. Those on ART who start early and take the medication diligently can suppress the amount of the virus — or viral load — in their bloodstreams. If the viral load becomes suppressed to the point it is undetectable, a person with HIV cannot spread the virus through sex. More than 30% of Gen Z-ers and 38% of millennials said they have had days where they forgot to take their medication. And 30% of diagnosed respondents from each group incorrectly responded that one could stop taking the medication if they started to feel better.

The survey demonstrated that young adults are not being sufficiently informed about HIV, how it is spread — and how it isn’t. Thirty-nine percent of Gen Z-ers and 28% of millennials said they had trouble forming romantic and sexual relationships because of their HIV status, and 84% of Gen Z-ers and 65% of millennials who abstain from sex do so because of their illness.

“Despite scientific advances and decades of HIV advocacy and education, the findings highlight a disturbing trend: young adults overwhelmingly are not being informed effectively about the basics of HIV,” Bruce Richman, the founding executive director of the Prevention Access Campaign and the Undetectable Equals Untransmittable (U=U) campaign said in the report. “These findings are a call to action that the crisis in the United States is far from over. It’s time to elevate a real conversation about HIV and sexual health among America’s young people, and roll out innovative and engaging initiatives to educate and fight HIV stigma.”

December is HIV/AIDS Awareness Month.

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