Owning HIV
Survey Reveals Troubling Trend of Misinformation and Stigma Among Millennials & Gen Z
by Hank Trout

Owning HIV: Young Adults and the Fight Ahead, a joint venture of Prevention Access Campaign and pharmaceutical company Merck, has released the results of a troubling one-time online survey of young individuals who self-reported as diagnosed (people living with HIV) or HIV-negative. The survey revealed that “participants are not being effectively informed about HIV and its transmission”; it revealed further that more than half of respondents (54%) reported not using condoms or pre-exposure prophylaxis (PrEP), despite declaring themselves more concerned about HIV than other sexually transmitted infections (STIs) (67%).

The survey sheds light on potential reasons that, although new HIV diagnoses in the U.S. remained stable between 2012 and 2016, new cases increased among people aged twenty-five to twenty-nine during that same time period. Young people now account for a majority of new diagnoses.

The survey of 1,596 Generation Z (Gen Z; eighteen to twenty-two years old) and millennial (23-36) individuals, conducted by Kantar Group between June 17 and August 5, 2019, also asked HIV-positive respondents how they acquired HIV. More than 75% of HIV-positive millennials and 60% of Gen Z reported that they had acquired HIV through sex without condoms or PrEP. Among HIV-positive millennial Hispanic/Latinx, African American, and men who have sex with men (MSM), the numbers are even higher. Some 84% of Hispanic/Latinx respondents, 79% of African American respondents, and 80% of MSM reported contracting HIV through sex without condoms or PrEP use.

Perhaps most disturbing, the survey revealed the persistent HIV misinformation and stigma among young adults in the U.S. and the ways such lack of knowledge (or presence of misinformation) impacts the ways young people with HIV are being treated. More than one quarter (28%) of HIV-negative millennials reported having avoided hugging, talking to, or befriending someone with HIV; thirty percent revealed that they would prefer not to interact socially with someone with HIV. One in three (34%) of HIV-negative Hispanic/Latinx and Black/African American respondents said they have avoided shaking hands or sharing food, drinks or utensils with someone with HIV.

Given those attitudes among HIV-negative millennials, it figures that more than three in four (76%) young adults living with HIV understood that someone with HIV may fear that sharing their status could cause them to be judged. Nearly all (90%) agreed that revealing their serostatus could lead to their losing friends or family and/or experiencing mental, physical or emotional abuse.

Not surprisingly, HIV-positive respondents reported that their HIV status had negatively affected their sexual health. 39% of HIV-positive Gen Z and 28% of HIV-positive millennials reported having trouble forming romantic or sexual relationships; 84% of Gen Z and 65% of millennial HIV+ respondents claimed to be abstaining from sex because of their HIV status.

The survey clearly demonstrated that young adults are not receiving accurate information about how HIV can and cannot be transmitted. This lack of information is worst among Gen Z, the population furthest removed from the devastation of the HIV crisis in the 1980s and 1990s. 41% of HIV-negative Gen Z respondents reported being completely uninformed or only vaguely informed about HIV, compared to 23% of HIV-negative millennials.

Despite the widespread efforts of the U=U campaign, only 31% of the young adults living with HIV surveyed knew that being undetectable means that they cannot transmit the virus sexually. Further, nearly 50% of HIV-negative respondents believed the virus could still be transmitted sexually even if HIV is undetectable. Most survey respondents living with HIV are on treatment; however, 33% of Gen Z and 38% of millennials said they have forgotten to take their medicine for three or more consecutive days in a row, potentially impacting the suppression of their viral load. Erroneously, more than 30% of all HIV-positive respondents, Gen Z and millennials alike, believe a person with HIV can stop treatment if they are feeling better.

In a press release dated November 25, 2019, Bruce Richman [A&U, December 2016], founding executive director, Prevention Access Campaign and the Undetectable Equals Untransmittable (U=U) campaign, said, “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. 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.”

Dr. Eliav Barr, senior vice president, Global Medical Affairs, Merck Research Laboratories, stated that “[W]e are proud to partner with the community to conduct this campaign and ultimately have a better understanding of the challenges and opportunities experienced by young adults living with and affected by HIV in the U.S.” Dr. Barr continued, “We are actively applying these findings to inform forward-looking programming that will seek to educate and empower this population. Our goal is to help improve overall understanding and literacy while elevating the urgency around this critical public health issue.”

Murray Penner. Photo by Elizabeth Brooks/Weber Shandwick

Considering that we are nearly forty years into the pandemic, and further considering the copious amount of correct information regarding HIV that is available on popular social media outlets (Facebook, Twitter, etc.), A&U asked Murray Penner, the Executive Director of North America, Prevention Access Campaign (himself diagnosed in 1986 at the height of the pandemic), just how this level of misinformation is possible. How, we asked, has so much misinformation been able to flourish?

“The findings related to a lack of understanding about HIV were very surprising to us,” Penner explained. “While the survey did not examine the sources of the misinformation many of the respondents had, it’s crystal clear from the results that we are not reaching young adults in ways that help them understand accurate information about HIV. The findings show that young people are not being effectively informed about HIV—how it is transmitted, lived with, and managed. This is why the survey and its results are so important.” Especially in light of the fact that the majority of new cases of HIV were diagnosed among young people, Penner continued, “We must address the stigma that still exists about HIV. U=U represents an opportunity to change how HIV is viewed and to erase HIV stigma. U=U means that a person living with HIV who is on effective treatment and has an undetectable viral load does not transit HIV to their sexual partners. This information was not well-known to survey respondents, again representing the need to more effectively inform young people about HIV.”

The next steps on the heels of the Owning HIV survey are still being formulated, Penner said. “A great deal of data was collected in the survey and we are now in the midst of further analyses to help determine our next steps to address the findings,” he explained. “The Prevention Access Campaign also has plans to increase communication efforts to share correct information about HIV. Social media will be a big part of these efforts and we hope that other organizations and programs will seize these findings and develop their own responses and campaigns so that all of us together own the future of the epidemic.” The goal of future efforts by the Prevention Action Campaign is creating a greater awareness of HIV——how it is transmitted, lived with, and managed.

Along with Richman and Penner of the Prevention Access Campaign, other community partners include Peter Sklar, Practicing Physician, Director of Clinical Research, Merck; Deondre Moore, Community Mobilizer, Prevention Access Campaign Ambassador; Wanona Thomas, founder of Live In Your Truth; and Josh Robbins [A&U, September 2017], creator of www.ImstillJosh.com.

“As a person living with HIV since 1986,” Penner continued, “these findings re-energize me to change what I thought was in our past——a lack of understanding about HIV and the stigma associated with it. Nearly forty years into the epidemic, we have the tools to end new transmissions. Owning HIV is a rallying cry for us to come together and finally end new HIV transmissions.”

For more information and the results of the survey, log on to https://www.prnewswire.com/news-releases/new-survey-of-young-adults-uncovers-low-levels-of-accurate-knowledge-about-hiv-transmission-coupled-with-high-risk-sexual-behaviors-300964124.html.

Hank Trout, Senior Editor, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a forty-year resident of San Francisco, where he lives with his husband Rick. Follow him on Twitter @HankTroutWriter.