Owning HIV: Myths and High-Risk Sexual Behaviors Continue Among Young Adults

Owning HIV, a new campaign designed to combat results from a survey of beliefs and perceptions about HIV among young adults in the United States, kicked off last month, just in time for World AIDS Day. It is a partnership between the Prevention Access Campaign and pharmaceutical giant Merck.

The survey uncovered a disturbing trend of confusion and insufficient knowledge of HIV and its transmission. This ignorance, coupled with high-risk sexual activity, poor disease management and stigmatizing behaviors among young adults, signals the HIV crisis hasn’t ended in this country.

“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,” said Bruce Richman, founding executive director, Prevention Access Campaign and the Undetectable Equals Untransmittable campaign. “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.”

Owning HIV, an online survey conducted between June 17 – August 5 of this year, tapped 1,596 Generation Z (ages 18-22) and millennials (ages 23-36) that self-reported as living with HIV or HIV-negative. Participants included African American, Latino, gay, bisexual, transgender and straight individuals. The goal of the study was to uncover attitudes and perceptions around HIV among young adults in this country.

Survey findings showed participants are not effectively being informed informed about HIV and its transmission. Not surprisingly, the trend was worse among Gen Z—the population furthest removed from the HIV crisis of the 1980s and 1990s.

The survey also found:

• More than two-thirds of HIV-negative young adults said they were most concerned about HIV compared to other sexually transmitted infections.
• More than half of the HIV-negative respondents reported not using condoms or pre-exposure prophylaxis, also known as PrEP.
• Stigma remains a barrier facing those living with HIV; 28 percent of HIV-negative millennials said they have avoided hugging, talking to or being friends with someone with HIV, despite the risk of HIV transmission through casual contact being nonexistent.
• More than three in four young adults living with HIV agreed someone with HIV may hesitate to share their status to avoid being judged, and 90 percent agree someone may avoid sharing their status because of the fear of losing friends or family, or experiencing mental, physical or emotional abuse.
• Thirty-nine percent of Gen Z and 28 percent of millennials living with HIV said they have trouble forming new romantic or sexual relationships due to their status. Eighty-four percent of Gen Z and 65 percent of millennials say they abstain from sex because of their HIV status.

One of the more troubling data sets from the survey found young adults aren’t being accurately informed about the meaning of an undetectable viral load. Scientific evidence verifies that people living with HIV on treatment who reach and maintain an undetectable viral load have effectively no risk of transmitting the virus sexually. In essence, undetectable equals untransmittable. 

Among diagnosed respondents who were asked about the term “undetectable,” only 31 percent reported it meant a person living with HIV cannot transmit the virus sexually. In addition, nearly 50 percent of HIV-negative respondents believed the virus could be transmitted when someone is undetectable. And while most survey respondents who are living with HIV are on treatment, 33 percent of Gen Z and 38 percent of millennials said they’ve forgotten to take their medicine for three or more days in a row—potentially impacting the suppression of their viral load. In addition, more than one-third of Gen Z and millennials living with HIV wrongly believe a person with HIV can stop treatment if they are feeling better.

“Merck invested in this research because of our ongoing and long-standing commitment to the HIV community, and it’s clear based on these findings, unmet needs exist among vulnerable populations across our country,” said Dr. Peter Sklar, director, clinical research, Merck Research Laboratories, and practicing physician caring for people living with HIV. “Understanding the problem is the first step in preventing a deepening of the HIV epidemic. We must continue to search for ways to better understand young people’s perceptions of HIV, promote safer sex behaviors and drive education and action in this population. It’s time to act. We are proud to champion these important issues with Prevention Access Campaign.” 

New HIV diagnoses in the U.S. remained stable between 2012 and 2016, but they increased for people aged 25 to 29 during that same time period. Young people now account for a majority of new diagnoses.