As public health officials move more toward talking about HIV prevention in terms of pleasure, data published in the journal AIDS and Behavior show that officials have a long way to go to undo decades of fear-based messaging.

This shouldn’t surprise anyone who has dated while living with HIV. HIV-negative men are still choosing stigma over the science of undetectable equals untransmittable (U=U). And the stigma exists everywhere, including in medical clinics.

Hanne Zimmermann and colleagues with the HIV Transmission Elimination Amsterdam Initiative in the Netherlands wanted to know what men who have sex with men (MSM) thought living with HIV was like, compared to what gay and bisexual men living with HIV reported they experienced. So Zimmerman’s team conducted a 39-question online survey all about people’s experience or perception of life with HIV.

The survey was completed by 1,501 people who identified as gay or bisexual men. Nearly one third (29%) were living with HIV, another 63% were not and an additional 8% said they’d never been tested for HIV. Respondents living with HIV had been diagnosed for a median of eight years and were a median of 51 years old. And they appeared to be doing well living with HIV. Nearly all (98%) were taking antiretrovirals, and 98% reported they had an undetectable viral load. However, one in four reported living with another health condition besides HIV.

Of the men not diagnosed with HIV, those who had been tested were a median of 43, and one in five (20%) reported being on HIV pre-exposure prophylaxis (PrEP). The men who didn’t know their status were a median of 37 years old. None reported taking PrEP, they reported lower educational attainment and they were more likely to live outside of big cities. The never-tested men and those who had been tested had similar rates of HIV risk behavior. 

When the researchers asked respondents what living with HIV was actually like, the undiagnosed men inflated the impact of the virus, compared to the men living with HIV themselves—sometimes by orders of magnitude. For instance, HIV-negative men thought that HIV would be nearly six and a half times more severe than it actually was for the men living with the virus and that they would be almost five times more vulnerable to other diseases than the men with HIV actually were. HIV-negative men predicted that they’d be nearly eight times as preoccupied with having HIV than they were.

In terms of stigma, the HIV-negative men were wildly inaccurate in their understanding of what living with HIV would be like. These men were three and a half times more afraid of transmitting HIV to their family, friends or colleagues; nearly eight times more afraid of transmitting HIV through sex; and 177 times more likely to think they’d be fired or not hired because of their HIV status. They even predicted six times worse sexual well-being and almost a sixfold reduction in sexual pleasure. They also predicted 42 times more trouble with discrimination than the men living with HIV reported.

Men who’d never been tested for HIV, meanwhile, sometimes thought even worse of living with HIV, including a 256-fold increase in their expectation of being fired or not hired because of their HIV status. This group was 43 times more likely to think they’d be rejected by a current sexual partner and 222 times more likely to think a new sexual partner would reject them.

Both HIV-negative and never-tested gay and bi men thought it would be much harder to get used to taking a pill every day than it actually was. But both groups saw their results calibrate better with those HIV-positive men if they knew someone living with the virus.

Of note, the Netherlands has universal health care, and the country decriminalized HIV nondisclosure except in cases of “intentional exposure” or transmission in 2005. The survey didn’t ask for participants’ race.

Of course, this is a self-reported survey, so it’s unclear whether it represents the broad swath of gay and bisexual men in the Netherlands.

“Correcting overestimation of burden can be useful to counteract stigmatization of individuals living with HIV,” wrote Zimmermann and colleagues. “Those who perceive the consequences of HIV as more burdensome than in actuality might be more afraid of a potential positive HIV test result and therefore postpone or avoid HIV testing. This effect might be reinforced by HIV prevention messages implicitly stating that an HIV infection should be avoided.”

Click here to read the study abstract.

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