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A new survey found 54 percent of young people said they don’t protect themselves with contraceptives or use PrEP during sexual activity. Getty Images
  • A new survey from Merck and Prevention Access Campaign revealed a large number of Gen Z and millennial respondents show a lack of knowledge about key information surrounding HIV.
  • This included believing HIV could be transmitted through casual contact like hugging.
  • The effectiveness of preventive treatments like pre-exposure prophylaxis (PrEP) medications also don’t appear to permeating the general consciousness among young people. Many are unaware they exist.
  • Experts say ways to help close this knowledge gap would be normalizing testing for sexually active people, emphasizing safe-sex practices, and helping to remove stigmas surrounding people who are living with HIV.

In the decades since the height of the HIV/AIDS crisis, great progress has been made by scientists, thought leaders, and public health officials to dispel harmful myths about the realities of living with HIV.

They’ve also worked to disseminate scientifically accurate information about prevention and treatment of the disease.

Despite these efforts, a new survey shows that young adults — those who fall under the Gen Z and millennial generations — seem to have low levels of accurate knowledge about a host of issues surrounding HIV.

While we’re in a current era of FDA-approved pre-exposure prophylaxis (PrEP) medications like Truvada and Descovy — which are shown to be effective drugs for HIV prevention — and more mainstream attempts at de-stigmatizing HIV, from television ads to depictions of people living with HIV in TV and movies, the new survey results can be dispiriting.

Today, pharmaceutical giant Merck, in partnership with Prevention Access Campaign, a nonprofit that aims to battle the HIV epidemic and end HIV-related societal stigma, released the survey results as part of a new public service campaign, “Owning HIV: Young Adults and the Fight Ahead.”

The campaign was designed around the new survey in hopes to better understand just how young people in the United States view and understand HIV.

A one-time online survey, the campaign reached out to 1,596 Gen Z (ages 18 to 22) and millennial (ages 23 to 36) young adults who reported they were either diagnosed with HIV or HIV-negative.

Not only did the survey shed a light on how young people living with HIV try to navigate the complexities that come from their status in modern life, it also showed huge knowledge gaps among HIV-negative young people who might be perpetuating long-dispelled health myths.

The new survey revealed that 28 percent of HIV-negative millennials say they avoid “hugging, talking to, or being friends with” a person who has HIV.

When it came to people who live with HIV, 90 percent of respondents said they agreed with the statement that a person might avoid sharing their status out of fear of losing friends and family as well as facing emotional, mental, or physical abuse.

“For me, the issues related to stigma and how much that persists, that’s what I found the most disheartening [about the survey],” said Dr. Peter Sklar, director of clinical research at Merck. “Sometimes, I take a step back and get lost in my own role at Merck, I see these issues of stigma have progressed over time. I didn’t think they had — the fact that, basically, more than 25 percent of [millennials] avoid hugging, talking to, and being friends with someone with HIV, it’s just tough. I thought we had come much further.”

Sklar told Healthline that he was struck by how these damaging stereotypes and inaccurate, harmful myths that he processed growing up in his own generation have continued on in younger ones.

“The fact that 30 percent said they prefer not to interact socially with someone with HIV was really staggering to me,” he added. “With the knowledge of this epidemic having been going on for three decades, just from my personal point of view, it’s been the most shocking. Now, wearing the physician hat, just understanding that the messaging I try to work hard on also isn’t sticking is shocking as well.”

The survey also showed that 41 percent of HIV-negative Gen Z people said they were not at all informed or only somewhat informed about HIV, which differs from the 23 percent of their older millennial counterparts who answered the same way.

The results shed a light on how a lack of education on a health topic can lead to increased risk.

While 67 percent of all HIV-negative adults said they were most concerned about HIV compared to other sexually transmitted infections, a high of 54 percent said they don’t protect themselves with contraceptives or use PrEP during sexual activity.

That being said, more than 75 percent of millennials and 60 percent of Gen Z people overall who reported living with HIV said they contracted the virus through sex without condoms or PrEP.

Breaking down the data even further by specific populations revealed 84 percent of Hispanic or Latinx respondents, 79 percent of black or African American respondents, and 80 percent of respondents who identified as men who have sex with men (MSM) reported having contracted HIV through sex without the use of PrEP or condoms.

For the big picture, Sklar explained that the results suggest messaging efforts around HIV need to be better thought out.

“The messaging efforts that roll out of this campaign, I think have to be individually tailored. I think this disease in this country really no longer is operating in the bubbles of where there is a lot of knowledge. A lot of new infections are occurring in places where the knowledge is not as common,” Sklar said.

He added, “We have to dig deeper in our results, see where they might give us some trends. That’s a part of it — it’s no longer a ‘coastal disease,’ it’s really a disease of the rural South, and that brings new and different challenge in terms of getting messages out there.”

Deondre Moore, a millennial from Houston, Texas, who is also running for Texas State Representative in 2020, says he sees evidence of the kinds of HIV-knowledge gaps highlighted by the survey “every day” among friends and acquaintances on social media.

In fact, he remembers moments that shaped his own misunderstandings and fears about HIV when he was younger.

One time, while watching a clip of legendary tennis star Arthur Ashe, Moore’s father told him the athlete was “a gay man who died of AIDS.”

At another moment, when walking into a concert with his father, they passed by a man who allegedly had AIDS, which prompted Moore’s dad to say, “You don’t want to touch him. If he scratches himself or has blood on his hand and touches you, you can get it, too.”

“Those things stuck with me,” Moore told Healthline. “I had no education to say otherwise.”

Moore, who identifies as gay, said he internalized a lot of this messaging himself. When he was a senior in high school, an older friend asked, “Would you ever date anyone with HIV?”

Moore recalled he said “no.”

These memories stood out to him when he was diagnosed with HIV at 19.

Moore said it was the day after Easter, and he was away at college ready to take an exam when he found out the results of an HIV test he took the week before. He got in his car, drove home, and told his mother.

“Look, I’m a ‘momma’s boy,’” he said with a laugh. “She did something that forever changed our relationship. I expected her to say, ‘I’m sorry this happened, you can’t be here, you can’t come around as much as before.’ Instead, she looked at me and said, ‘Well, I’m not going to bury my son. So [you’re going to] have to hit the ground running. Do what you do. Go back to school today. Take that test.’”

His mother’s insistence that he meet life head-on in the face of his HIV-diagnosis was a life-changing moment for Moore.

“I would hope other parents do the same for their kids, too,” he said.

Since then, Moore has taken her words to heart. Soon after, he became an HIV advocate, working hard to push back on messaging he heard while growing up.

His desire to do good has also fueled his candidacy for Texas State Representative in the 2020 election.

Currently, Moore is serving as a spokesperson for the new “Owning HIV” campaign. He said it is crucial that someone like him have a prominent voice in HIV education.

As an openly gay black man living with HIV, Moore said it’s been “empowering” to be able to use a large platform and share his story.

“There’s a lot of ‘me’ out there, people with my experience. I want to make sure people have knowledge before it happens. I don’t want more people to have to go home and tell their mom — look her in the face and say, ‘Your baby’s sick, I have HIV,’” he added.

Having a platform is also crucial to another spokesperson for the campaign, Wanona Thomas, a certified nursing assistant who now runs her own nonprofit “Live In Your Truth” and has dedicated herself to dispelling misconceptions about HIV.

Thomas told Healthline that it’s important that others like her — a young, black heterosexual woman living with HIV — see her and hear her story about her own lived experiences.

“Let’s be honest, HIV is [often] looked upon as a gay white man’s disease, or even just a ‘gay disease,’ but you don’t really see black mothers or black women, or if you do, you see lesbians, or you associate them with being gay, you don’t see heterosexual women. We’re not seeing black women, again, and then young women — I’m part of the millennials, part of new diagnoses,” she said. “So, this is very personal.”

Thomas has been living with HIV since November 2016, but said that she didn’t speak openly about her status — outside close friends or relatives — until about a year later.

As a mother of four, she said it’s crucial that campaigns like this one exist so that younger generations can move past the problematic notions about HIV they have been conditioned to receive.

She recalls that in her teen years in Kansas, she only vaguely heard about HIV in sex education classes. She became more familiar with it once she started working as a nursing assistant at 17.

“Even then, I really didn’t think about it too much. I heard ‘HIV’ and, again, said, ‘That’s a white gay man’s disease. I’m not gay, it won’t affect me.’ Here I am, I’m a heterosexual black woman — there are so many other stories. My story is not unique, that’s what’s sad,” she said.

“I’m a mother of four, I have the generation under Gen Z, my oldest is only 8 and when he hears HIV he automatically associates with me. But I don’t want him to be a part of this knowledge gap we currently have with our young adults,” Thomas added. “Once they hit their teenage years, I want them to understand.”

Looking back at the survey results, one of the toughest realities is how key information on the transformative scientific strides that have been made in recent years aren’t being delivered clearly to America’s young people.

For instance, the concept of “undetectable equals untransmittable,” or “U equals U,” — the public service messaging popularized by Prevention Access Campaign — is a clear way to explain that people with HIV who adhere to their medications can achieve undetectable amounts of HIV in the body.

This means they are unable to transmit the virus to a sexual partner, according to the Centers for Disease Control and Prevention (CDC).

Despite all of the information around this fact, the survey shows that only 31 percent of respondents who are HIV positive knew that being “undetectable” means the virus cannot be transmitted, while nearly 50 percent of HIV-negative respondents said they believed the virus could still be transmitted when a person is undetectable.

Additionally, 33 percent of Gen Z and 38 percent of millennial respondents who are living with HIV said they have forgotten to take their medications for three or more days in a row. This could seriously affect their ability to maintain viral suppression.

Dr. Kristin Englund, an infectious disease expert at Cleveland Clinic, did her own unofficial survey before speaking with Healthline — she asked her college-age kids, one 21 and the other 19, about HIV. She said that they heard some information about the virus in their high school sex education classes, but PrEP was not discussed, nor was information on HIV testing provided.

Beyond this, she said the experiences of living with HIV were never highlighted.

Englund, who is not affiliated with the campaign, said this education gap isn’t surprising but is certainly sobering for a physician to hear.

“It’s really difficult as an HIV provider. I see folks when they come in with a new diagnosis with HIV who have the sense of ‘I didn’t realize, I didn’t even think about it, I didn’t think about getting HIV.’ Now, I do think there’s been a much better outreach thanks to PrEP and, frankly, when folks do talk about it and commercials they see online talking about PrEP or Truvada, I think that can be effective,” she said.

On the flip side, she added that all the ad campaigns in the world are competing with the fact that “a lot of 18, 19, 20-year-olds see themselves as invincible.”

Echoing what Thomas said, Englund believes information around HIV is “skewed toward the MSM (men who have sex with men) population and women don’t get the information nearly as much.”

For instance, a heterosexual woman might not know all of the sexual practices of her male partner and might have no idea she is even at risk.

Englund said a big solution would be demystifying and destigmatizing simple conversations around the need for people who are sexually active to receive regular HIV testing.

She stressed that this should just be viewed as a normal practice, without the shame-filled dialogue often surrounding it. The same goes for discussing the option to take PrEP medication, too.

“Some of those conversations are still not being had and are uncomfortable for patients and some providers. Some providers feel they are being made to ask ‘something odd’ about a patient’s sexual practices, when instead, it should just be considered a mainstream practice. It should be a mainstream practice for a provider to say, ‘If you’ve ever had sex, you are at risk for HIV, you should receive testing.’”

She also stressed that HIV should just be a normal point of conversation that comes from parents when they have “the talk” with their children. She said fighting some of the stigma around even discussing HIV needs to come from providers, parents, and educational institutions all at once.

Englund added that it’s dispiriting that both of her kids are on college campuses right now and both told her that HIV doesn’t come up much, even among high-risk groups like gay and bisexual young men.

“That’s terribly sad, those environments could make a tremendous impact with educational campaigns, especially for young people who didn’t receive that information in high school,” Englund said. “Whether it’s social media or other means, we need to do a better job of getting information out there.”

Getting information out there is partly one of the driving forces for someone like Thomas to be such a vocal advocate about HIV education.

She said that she wants both HIV-negative people and people living with HIV to hear the message of this campaign. Thomas added that it’s especially important that people living with HIV not feel the need to silence their own voices.

“Why are you stopping your life and not being the fiercely unapologetic person God, or the universe, or whatever you choose to call it, has made you to be? We are all uniquely made, we all are beautiful people, we all have a purpose,” Thomas said.