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Is Not Knowing Your HIV Status The New Stigma?

Pharma-sorting is increasingly how gay men pick sex partners, erasing old fear of undetectable men and PrEP users. Is this better, or is it just shifting dangerous stigma?

These days I’ve been noticing that some guys on hook-up apps are indicating a preference for other men who are also on PrEP, as well as those living with HIV who have an undetectable viral load (since undetectable = untransmittable).

On one hand it’s great that there isn’t the same stigma surrounding HIV that there once was, but the strong preference still seems odd, since PrEP has been proven to be over 99% effective at preventing the transmission of HIV. In a way, it's akin to using two condoms, double-wrapped—which might seem doubly protective, but actually a bad idea: The friction between the two condoms can cause them to weaken. But instead of producing an excess of friction, this PrEP-or-poz-only attitude shifts stigma to those in-between people who aren’t on PrEP and may not know their status. The question is: Is this a bad thing?

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homosexual couple relaxing togetherness and sharing a massage

After having been on PrEP for a couple of years, I now find myself in that in-between. I had to stop using Truvada due to accessibility issues, so I’d be lying to say that I don’t also feel more comfortable having sex with men who are on PrEP or those with an undetectable viral load—basically people who aren’t like myself, because it’s us in-betweeners who are perpetuating this virus.

I don’t serosort, I never have, but sex with guys who are on PrEP or who are undetectable is more carefree. There are no worries about whether a condom has slipped off or broke, and I don’t wonder whether I’m sober enough to practice safer sex. I can somewhat relate to the sentiment observed online, but the difference is that I’m not protected by PrEP, which is why that attitude is still baffling to me.

The only explanation I could come up with for this attitude was that these men aren’t convinced that PrEP works effectively. Granted, there have been two verified PrEP failures (there was a third documented case but it was not verified). Any recorded failures could be frightening if you over-think it, but it was always said to be over 99% effective. Two verified failures in 200,000 users worldwide would still constitute a 99% effective rate, so fear of ineffectiveness is not a valid reason for the shift in attitude.

Man holding a pill used for Pre-Exposure Prophylaxis (PrEP) to prevent HIV infection

“Now I hear that people on PrEP are doing what we call, ‘pharma-sorting,’—so it’s no longer sero-sorting they’re pharma-sorting,” PrEP educator, Damon Jacobs says. “That to me is a very poor, poor judgment and another indicator of fear, of just how deeply fear and prejudice and stigma infiltrates what we do and how we react sexually. Because honestly, if somebody is taking PrEP and they’re taking responsibility for being on PrEP, what in the world does it matter?”

He has a point, especially when there’s no way of knowing whether somebody is telling the truth about their HIV or pharm-status.

Jacobs believes that there are some who simply can’t enjoy screwing without fear of some terrible something happening, despite the hard science. It’s an anxiety that dates back to the beginning of the AIDS epidemic as well as fears instilled by institutions like the Catholic Church which shamed victims in the early 1980s for their lifestyles.

Jacobs also attributes this attitude to the fact that some PrEP users may not understanding the full impact of the medicines they’re on. There are doctors who prescribe Truvada while citing false stats. Even the CDC is still saying that PrEP reduces the risk HIV transmission by more than 90%, which is very different than describing something as more than 99% effective. Those nine-plus percentage points leave a lot of room for anxiety, it turns out.

I emailed Dawn K. Smith of the CDC’s Division of HIV/AIDS Prevention, who explains that PrEP is not 100% effective, especially if one fails to adhere to the daily regiment. She writes that some people select their sexual partners based on attributes including physical or social characteristics, while others base it on factors to reduce their risk. She sees one’s pharma-status as another classification to help reduce one’s risk of HIV infection. My argument would be that although PrEP may not be 100% effective, it’s still over 99% if one does adhere. So does a .0015% risk justify the shift of stigma to people like me?

“We seem to be constantly having these debates around who’s up, who’s down, what’s being stigmatized and what’s being normalized,” said author and renowned sex-advice columnist, Dan Savage, who was helping me think this through. “If we’re going to have a stigma, would it be better and healthier for the community to have a stigma around not being on PrEP?”

Despite such a question, he points out that stigma is a bad thing. We’ve seen the negative effects of HIV-related stigma and shame for years: There are those who may not know their status and avoid testing out of fear of a positive result. Because of stigma, they won’t get treated if required and could potentially spread the virus. Those same people may be too afraid to speak to their doctor if they’re having bareback sex because they don’t want to seem slutty; they ask for PrEP if they’re negative, even though they’re the ones who need it most. Then there are those who are living with HIV who may be reluctant to begin treatment for fear of others knowing their serostatus. Without treatment, the virus can spread and may even lead to death. Though the attitude I observed online shifts stigma, it also debunks so many other long-held and damaging stigmas—definitely a positive change. I wonder whether this attitude could encourage more testing, treatment while promoting PrEP use.

Man pulling underwear of man embracing man, mid section

Jacobs doesn’t believe the end justifies the means. He worries that if people are starting PrEP because of peer pressure, shame, and stigma, then they may adhere irregularly, if at all. If someone takes a pill or two a week instead of daily and acquires HIV but continues using Truvada, then the virus can become resistant to the drug—definitely a bad outcome.

The more that I meet people who are taking PrEP, the more I wish I were still on it myself. I miss having that level of protection, and knowing that I’m now left out by some makes me want it that much more.

“Do we want to have a community norm around people using PrEP?” Savage asks. “Maybe we should have that norm. And then maybe that’s the sharp end of the stick.”

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