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Working to remove stigmas

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.

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