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What We Know About HIV Transmission Should Influence PrEP Messaging

February 24, 2015

What if a huge proportion of HIV infections came from people who didn't know their status or who weren't in medical care? How would that change how we view the role of pre-exposure prophylaxis (PrEP)? And what would it mean for my fellow activists working at either end of the viral divide between HIV-positive and HIV-negative people, even as we seek to bridge that divide?

Well, seems like it's time to figure it out.

In a new analysis of transmission data published in the journal JAMA Internal Medicine, researchers estimate that approximately 91.5% of new HIV infections in 2009 were acquired from people who either didn't know their HIV-positive status or who were not in medical care. The researchers believe that 30.2% of those infections came from people unaware they were positive, while the other 61.3% were from those diagnosed but not in medical care.


Remember, there are also the early PARTNER study findings, which show that those with undetectable viral loads do not transmit HIV -- even after having lots and lots of sex. And the HPTN 052 study, which shows a drastic reduction in HIV infections when an HIV-positive person is on medication.

Given all this, it is pretty clear that those who are diagnosed with HIV who are in care and on medicine are not spreading the virus.

With all that we know now about the science of transmission and prevention, why do people continue to discuss PrEP solely in the context of having known HIV-positive partners? And in what ways do we still stigmatize people living with HIV in our discussions around PrEP as a tool to bridge the viral divide?

I'm reminded of the 2012 poster "I Don't Need to Wear a Spacesuit to Fuck You," from Canadian artists and activists Onya Hogan-Finlay, Morgan M. Page and Jessica Whitbread. Inspired by a conversation in which Whitbread explained to a date that the date "didn't need to wear a spacesuit to fuck" her, the image shows two women in spacesuits, legs interlocked.

The image is fun, the explanation is moving and the title is striking. But are we now treating PrEP like a spacesuit? Are there ways in which we talk about PrEP that insinuate we need it in order to be intimate with those living with HIV?

PrEP protects you from a thing -- an adaptive little virus called HIV. It should not be framed as something that protects you from HIV-positive people. It protects you from a what, not a who.

We can talk about how PrEP protects you from unsuppressed virus. There are also many reasons -- personal, financial, medical and more -- as to why a person may not have a suppressed virus, so I wouldn't even say that we should frame it as a detectable versus undetectable issue.

PrEP is protection from unsuppressed virus, not from HIV-positive people. When we talk about the who instead of the what, we risk spreading the stigma that can keep people away from testing and care in the first place.

The majority of the infections evaluated in the new analysis came from the uncontrolled viral load of those who knew their status, but had not yet entered medical care. And though I don't know what keeps every individual from entering medical care, I can venture to guess that a large part of the problem is stigma. If we continue to talk about people living with HIV as infectious, as if we need a little sky-blue spacesuit in order to be intimate with them, do we keep them stigmatized and thus, potentially, keep them out of care?

Now, I know plenty of serodiscordant couples that use PrEP in order to have the best sex life possible. And this is not meant to chide them at all. In fact, I applaud them emphatically -- always have and I always will. Most serodiscordant PrEP-using couples I know ventured into the world of condomless sex long before PrEP and have embraced it as an extra protective layer, and as a way for both the negative and positive partner to live in solidarity -- using HIV medications in both partners' bodies to keep the virus in check.

If anything, I think these findings show those who are prevention activists -- and not solely PrEP advocates -- that our work lies, in part, in making sure that HIV-positive people have greater access to medical care, and a reason to get into medical care. And that means vigilance in stopping stigma, even when it comes in subtle forms.

If we stop stigmatizing those who are HIV positive, we allow space for people to seek HIV treatment. And if you are on PrEP and can advocate for your negative sisters and brothers to get on medication, you can also stand with your positive sisters and brothers to make sure they have access to treatment as well.

If PrEP is helping us communicate to partners of many statuses that we wish to be close with them and touch them in new ways, it is time for our language to be in step. If HIV-negative people can allow HIV-positive people to enter them and to receive them, then we can talk about intimacy with HIV-positive people in a way that reflects that desire to be close.

Mathew Rodriguez is the community editor for and You can follow him on Twitter at @mathewrodriguez, like his Facebook page or visit him on his personal website.

Copyright © 2015 Remedy Health Media, LLC. All rights reserved.

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This article was provided by TheBody.

Reader Comments:

Comment by: Anonymous (San Diego ) Mon., Mar. 2, 2015 at 1:35 pm UTC
I would not call it stigma. Is just plain and simple ignorance.. I should know I was one of them until I saw my strategy fail miserably. All the facts point to the fact that neg folks must be cautious with other neg folks to keep their neg status. But is easier to ignore all facts and just blame and demonize those who are poz, with a viral load well controlled and with near zero chance - in fact a extremely low and unlike not yet proven theorycally chance - to infect anybody.
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Comment by: Anonymous Tue., Mar. 10, 2015 at 8:23 am UTC
it's not ignorance! Ignorance suggests an idea not known or understood. It doesn't take a genius to grasp the idea that the amount of virus in the body correlates with how infectious someone is. This is hysteria against HIV+, plain and simple, and it is very much stigma. It doesn't matter if you were susceptible to that hysteria before diagnosis or not. Sites like this have been part of the problem, as they're negligent in reminding people of this obvious fact. Instead, they advertise PrEP as "a great tool for serodiscordant couples", as if the - half of an identified +/-couple was actually at any realistic risk from the + half, or they exaggerate how infectious HIV+ are, citing HTPN052 rather than any number of studies that suggest undetectables are not observed to transmit. Rather than provide realistic prevention guidance, this trend dehumanizes people with HIV and rationalizes undue fear. It supports discriminatory laws and has created an environment in which no one in their right might who suspects they'll test positive is going to submit for an HIV test.

This is hardly a new trend. Scan previous articles on this site from previous years, you'll see tons of articles whose headlines seem to validate serosorting. A full retraction is long overdue, but I consider this article a small, but welcome, step in the right direction.

Comment by: Someone Wed., Feb. 25, 2015 at 2:39 pm UTC
I've been an outspoken critic of you, but I'd like to applaud you for this. Too much PrEP advocacy has reinforced HIV stigma and come at the expense of those who don't use it. This website has been no exception to the trend.

Instead of being presented as an "extra layer of prevention", PrEP use become another "status" to be listed on hookup sites, elevating the user and further widening the chasm between the "clean" everyone else. It doesn't help that there's been no shortage of hostile rhetoric from PrEP users. Phrases like "I'd like to stay this way", continual refusal to engage with HIV+ when there is no reasonable threat of transmission, listing of HIV test dates and occasionally threatening behavior from PrEP users is far more common than anyone actually being called a "Truvada Whore". When you hijack the AHF's call to expand treatment, you look selfish. When you disregard the likelihood of sexual HCV transmission or state it isn't a problem because you're negative, you look stupid, arrogant, possibly homocidal. When you call PrEP "gay birth control", you insult every woman whose struggle to control her reproductive destiny has been sabotaged by patriarchy.

These actions have reinforced stereotypes held by positive PrEP skeptics and negative non users alike, that the typical PrEP user is a sociopath, concerned only with himself and only with the present.

It doesn't help that this site and many groups have visibly shifted their emphasis from advocating for the needs of HIV positives to advocating for a drug whose widespread utility remains debatable. Almost completely absent on sites like this is any mention of or advocacy for a cure, even as more reputable, disinterested, mainstream news sites have begun to regularly report on progress. Gone are demands for treatment and HIV research. Instead of being seen as forums for those with HIV, sites like this are increasingly seen as part of the problem.
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Comment by: Mark Milano (NYC) Tue., Feb. 24, 2015 at 5:56 pm UTC
And the sad thing is that the greatest stigma gay men with HIV face these days is not from society, but from HIV-negative gay men. Shame.
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