Today in the United States, teens and young adults have highly stigmatizing beliefs about HIV and are largely unaware of recent scientific advances that could stop transmission, according to a survey conducted by the Prevention Access Campaign and the pharmaceutical company Merck.
The survey, which included nearly 1,600 youths ages 18 to 35, found that 90% of those living with HIV said that sharing one's status could mean losing friends or family and suffering from emotional, physical, or mental abuse.
Meanwhile, 28% of those surveyed who are not living with HIV seemed to justify that fear, noting they would be reluctant to hug, talk to, or associate with someone living with HIV -- despite the fact that casual contact is not a risk for transmission.
These and other survey findings could explain alarming trends in HIV incidence in the United States. From 2010 to 2016, the number of new diagnoses decreased among young teenagers and older adults, but increased among millennials ages 25 to 34.
According to the Centers for Disease Control and Prevention (CDC), one of the biggest reasons that youth aged 13 to 24 now comprise about 21% of all new diagnoses is because of inadequate sex education.
Results of the Prevention Access Campaign/Merck survey were collected and presented in consultation with a working group comprised of millennials and youth advocates living with HIV.
One of the members of the working group -- Wanona "Nunu" Thomas -- was diagnosed with HIV three years ago, at the age of 24. Thomas said that if she had had a proper HIV and sexual health education prior to becoming sexually active, "that could have helped me continue to be HIV negative."
"One of the things that really upset me were [that] a lot of things I learned after getting the diagnosis I should have learned beforehand," said Thomas, who created the Live in Your Truth Foundation after her diagnosis.
Another member of the working group, Josh Robbins, was diagnosed with HIV at the age of 29.
"I wish the information was told to me before I got the diagnosis," said Robbins, who is the creator and publisher of the HIV information website I'm Still Josh. Other members of the working group included Yonce Jones of Harlem United, Cameron Kinker of Prevention Access Campaign, and Deondre Moore, a community mobilizer with AIDS Healthcare Foundation Houston and ambassador for the Elizabeth Taylor AIDS Foundation.
The survey results will be used to advocate for better HIV and sexual health education in schools, in health care settings, and in society in general. The survey is part of a joint Prevention Access Campaign/Merck project called, "Owning HIV: Young Adults and the Fight Ahead."
The survey itself was conducted online from June 17 to Aug. 5 by a data consultancy company called Kantar Group. Overall, 1,596 people participated, including members of Generation Z (aged 18 to 22) and millennials (aged 23 to 36). About half of respondents were people living with HIV, and the other half were HIV negative.
The survey also represented groups with a higher burden of HIV, including 408 black/African-American respondents and 271 Hispanic/Latinx respondents. About 60% of respondents were straight/heterosexual, and the remainder identified as gay, bisexual, men who have sex with men (MSM), or another sexual orientation. The survey also included 50 transgender or gender-nonconforming respondents. About half lived in big cities, about 15% in rural areas, and the remainder in suburban areas outside cities.
Safe Sex Practices
The survey results helped unpack some of the misconceptions and misinformation around safe-sex practices -- perhaps highlighting the lack of adequate sexual education in schools and communities.
For example, about two-thirds of HIV-negative respondents said they were more concerned about HIV than other sexually transmitted infections, yet less than half were using condoms or pre-exposure prophylaxis (PrEP) for protection.
Among those who were HIV positive, about two-thirds said they contracted HIV via unprotected sex (without condoms or PrEP). Meanwhile, fewer than a third of HIV-positive respondents were aware of a paradigm-shifting scientific development known as undetectable equals untransmittable (U=U), in which researchers have confirmed that it's essentially impossible for HIV-positive people to transmit the virus -- even via condomless sex -- if they are taking daily medication and have an undetectable amount of virus in their blood.
"That is a message that changed my life when I was diagnosed with HIV, because at the moment, I thought I would never be able to find somebody to love me again," said Robbins. "U=U was a life-changing moment for me, and this survey reveals that there are a large number of people living with HIV who do not know that information."
When it comes to HIV and safe sex education, "there's really a lot more work that needs to be done," said Murray Penner, executive director of the Prevention Access Campaign in North America. "We must do more to improve this knowledge gap in HIV literacy in Gen Z and millennials."
Treatment and Adherence
Among young people living with HIV, survey results indicate that misinformation exists about medication management. Almost all of the HIV-positive survey respondents said they were taking medication -- a rate that far exceeds the estimated 27% of young people living with HIV who are retained in care nationwide, according to the CDC.
But despite the fact that almost all of the HIV-positive survey respondents seemed to be engaged in the health care system, 33% of Gen Zers and 38% of millennials said they have forgotten to take their medication for three days in a row. Perhaps even more alarming, about a third of Gen Zers and millennials believed incorrectly that it's OK to stop taking your daily medication once you start to feel better.
Merck representative Peter Sklar, M.D., M.P.H., director of clinical research, said it's obvious there are still knowledge gaps, even among this highly engaged group of HIV-positive people.
"The science [that] has evolved over many years is quite clear -- take [medication] regardless of whether you're feeling better or not," he said, noting that the medical community needs to do a better job of communicating this fact clearly to patients.
Stigma and Misinformation
The survey also found a high level of stigma and misinformation among millennials and Gen Zers about HIV transmission risk. Thirty percent of HIV-negative millennials said they would prefer not to interact with people living with HIV. Among Hispanic/Latinx and black HIV-negative respondents, 34% said that in the past, they have avoided shaking hands or sharing utensils, drinks, or food with someone living with HIV.
Meanwhile, young adults living with HIV reported the devastating effects of stigma on their emotional, mental, and sexual health. About a third said they have found it difficult to forge new romantic relationships, and about two-thirds said they have abstained from sex because of their HIV status.
Members of the working group confirmed that HIV stigma has had a negative impact on their lives. Thomas said that at a recent family gathering, she shared food with another member of the party -- a father of young children. When his children's mother found out that he had shared food with Thomas, she took his children away from him because she believed his actions might expose their children to the virus, according to Thomas.
"To find out that I was the cause of having someone's children stripped away from them really hurt," she said. "After so many advancements in this field, you would think that people would know that casual contact or even eating the same food as someone with HIV -- the virus cannot be spread.
"This survey shows why we are saying: Stigma is really the killer of HIV."