Lack of HIV knowledge revealed by survey raises concern among experts, activists

A new survey suggests that people under 36 lack basic knowledge of HIV, how it is transmitted, treatment and survival with undetectable levels of the virus.

By Brian P. Dunleavy
Lack of HIV knowledge revealed by survey raises concern among experts, activists
Scientific evidence has confirmed that people living with HIV on treatment who reach and maintain an undetectable viral load have effectively no risk of transmitting the virus sexually. Photo by Kim Cloete/NIH

Dec. 2 (UPI) -- HIV can't be passed from one person to another through a hug, but the reluctance of younger Americans to share the gesture with someone who is HIV positive has raised concerns that additional education on the disease is desperately needed.

In a survey conducted by the Prevention Access Campaign, HIV-positive activists and drugmaker Merck, more than one quarter of HIV-negative "Millennials" who responded said they have avoided hugging, talking to or being friends with someone with HIV.


Additionally, 30 percent said they would prefer not to interact socially with someone with HIV.

Activists involved in the project say the results are evidence that many in the general population -- particularly those between 18 and 36 years of age -- remain poorly informed about the virus and its transmission.

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"The findings are very surprising to me," Murray Penner, Executive Director of North America, Prevention Access Campaign and one of the activists involved in the project, told UPI. "Having lived with HIV for nearly 34 years and worked in the field for 30 years, I definitely believed we were doing a better job at getting information about HIV out to our young people."


The "Owning HIV" survey was administered as a one-time, online questionnaire by Kantar Group between June 17 and August 5.

The target audience was young adults classified as either "Generation Z" -- those currently between age 18 and 22 -- or "Millennials" -- those between age 23 and 36 years of age -- and nearly 1,600 responded. Participants included black, Hispanic, gay, bisexual, transgender and straight individuals, all of whom self-identified as either HIV-positive or -negative.

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Notably, 41 percent of HIV-negative Gen Z respondents said they were either not at all informed or only somewhat informed about HIV, compared to 23 percent of HIV-negative Millennials.

In terms of reported behaviors, more than two-thirds of HIV-negative young adults said they were most concerned about HIV compared to other sexually transmitted infections, yet more than more than half said they did not use condoms or pre-exposure prophylaxis, better known as PrEP, to prevent HIV transmission.

Among all HIV-negative Hispanic and black respondents, one in three said they have avoided shaking hands or sharing food, drinks or utensils with someone who is HIV-positive, while 75 percent and 90 percent said that someone with HIV may hesitate to share their status to avoid being judged or for fear of losing friends or family, or experiencing mental, physical or emotional abuse.

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Both HIV-positive and -negative respondents were not well informed about the term "undetectable," with just 31 percent of positive respondents knowing that a person living with HIV cannot transmit the virus sexually when its undetectable in the blood, and nearly 50 percent of HIV-negative respondents believed the virus could be transmitted when someone is undetectable.

Scientific evidence has confirmed that people living with HIV on treatment who reach and maintain an undetectable viral load have effectively no risk of transmitting the virus sexually -- a status known colloquially as "Undetectable=Untransmittable" or "U=U."

"Activists have been very busy encouraging and at times demanding public health bodies to disseminate the U=U message," Josh Robbins, creator of, and another of the activists involved in the survey project. "We must continue that movement. I see the immediate need to make sure that physicians are sharing this with patients, and to address the criminalization of HIV, which could be impacting testing. This is a national issue and we need everyone to work together."

"Public information campaigns about HIV have diminished in recent years," added Richard Chaisson, director of the Johns Hopkins University Center for AIDS Research, who was not involved in the survey project.


"While PrEP is being promoted in a number of settings, basic details about HIV transmission are not being addressed as much as a decade ago," Chaisson said. "The finding that stigma is common is sobering but not surprising -- the fact that HIV is not curable remains frightening to many people, and although it is now easily treated with one pill, once a day, it is still a lifelong infection."

In general, experts and activists agree that education about HIV for young people is vital, as is more support services for adolescents and young adults most at risk for the disease. They also agree that, despite the troubling findings, the survey is an important first step.

"This type of survey with my peers has never been done before about HIV knowledge gaps and this first step is really important," Robbins said. "We have the information and it must guide educational programs. That's the plan of all of this. This is the right path."

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