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Opinion

2 People Got HIV Despite PrEP -- and Millions Get HIV Without It

October 18, 2016

JD Davids

JD Davids (Credit: Selfie by JD Davids)

This year, two cases have been reported of people getting HIV while adherent to pre-exposure prophylaxis (PrEP). The most recent was revealed this week at the HIV Research for Prevention conference in Chicago.

In this same year, about 50,000 people in the U.S. (plus many, many more worldwide) will have acquired HIV while not taking PrEP.

Why do we focus so much on these rare cases of transmission among people who are adherent to PrEP?

As someone who has followed PrEP developments for many years and is also a PrEP user, my heart is heavy hearing of this second case of HIV in a person who was PrEP adherent. Yet, given the most recent stats on HIV diagnoses in the United States, we know that nearly 200,000 non-PrEP-related cases of HIV transmission may have occurred in the U.S. alone in the four years since Truvada (tenofovir/FTC) was approved as an HIV prevention tool.

As always in the complicated course of the HIV pandemic, it's vital that we lead our efforts with science, public health and health justice, rather than being swayed from effective strategies by outliers that can trigger fear or exacerbate HIV stigma.

In a world where people with HIV are jailed for consensual adult sex or even spitting, it can seem that HIV stigma has no bounds. And a specific cloud of fear has long existed around PrEP, even when it was still a theoretical concept, as if the idea of less-fettered sex is, in and of itself, dangerous.

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The moderators of the popular PrEP Facts list on Facebook work assiduously to share information and temper judgment, but it's clear from the posts on that page that it's very hard for many people on PrEP to believe that we are, indeed, at incredibly low risk of HIV infection. The news of this new infection will recharge anxiety and fear among many who have found a level of unimagined comfort and reassurance from being on PrEP.

Howard Grossman, M.D., the HIV provider who reported on this transmission, reminds us that these two documented cases of HIV acquisition by people adherent to PrEP have come in a period when perhaps 100,000 people at risk of HIV have used this HIV prevention method.

It's encouraging to see that this newly positive person is doing so well on treatment and has never had a detectable HIV viral load. That means he's on track for a healthy, long life and -- as with all people who have undetectable HIV viral loads on treatment -- has negligible risk of HIV transmission.


PrEP Doesn't Work if You Don't Take It -- or Don't Know It Exists

We know that PrEP works incredibly well if you take it, and it doesn't work at all if you don't. Will news of this second case dissuade the very individuals who could benefit from PrEP from taking it or slow efforts to expand access to it?

I'd say the biggest "risks" of PrEP and HIV transmission are that we fail to overcome the obstacles to unleashing its power to drastically reduce HIV incidence: One in three primary care doctors and nurses surveyed in 2015 had never heard of it; the price is exorbitant; and we lack systems of education and care to help people decide if they need it and want it, as well as stay adherent to it. Nevertheless, countless cases of possible HIV transmission have likely been averted by the expanded use of PrEP -- yet so much more can be done.

Why do public health systems, HIV organizations and social marketing campaigns still put out misleading information, such as the statement that PrEP is "over 90% effective," when the truth is it is almost 100% effective? The fact that these two cases are big news proves just how effective PrEP is. By comparison, no one familiar with HIV would be shocked that a person became infected despite using condoms, as we know that happens with disturbing frequency.

Most childhood vaccines work 90% to 100% of the time. But you won't see many vaccination campaigns heavily tout that they're "over 90% effective." Even if it's technically correct, it would likely be misunderstood as meaning that up to 10% of kids who receive the vaccine will acquire the illness it's meant to prevent -- even though the actual rates would be drastically lower. And that's not a benign misunderstanding: It's the kind of thing that leads to bad public health (and personal health) outcomes.

Using the 90% stat means people may disregard PrEP when it could help them not acquire HIV. Careless exaggeration of the importance of the very rare cases of HIV-despite-PrEP can do the same.


PrEP Works Really, Really Well

PrEP stops HIV acquisition extraordinarily well.

If you are taking PrEP and have sex, the odds of getting HIV are nearly as low as finding a unicorn in a field of four-leaf clovers. That's because PrEP stops HIV acquisition extraordinarily well.

The only risk we know of so far of PrEP not working is what happened in these two cases: A person encountered someone who likely had a detectable viral load, and that person's HIV was resistant to the drugs found in Truvada.

Not only that: The sex act itself had to include fluid exchange that had a risk of HIV transmission. For example: Oral sex is really, really unlikely to be risky for HIV.

For those with an organic penis, being an insertive partner generally carries reduced risk relative to being the receptive partner, though it does seem that one of the two cases of HIV-despite-PrEP was an insertive partner. (I've got some issues with this CDC interactive guide about levels of risk from different acts under different circumstances, but it provides a general ballpark of the spectrum of risk.)

Even with all that, there's generally very low risk that any particular sex act will result in HIV transmission. That is to say, most sex -- even without condoms, PrEP or the person with HIV being on treatment -- does not result in HIV transmission. Add in any or all three of those interventions and the risk plummets further.


Risk, Life, Fear and Love

That cascade of decreasing likelihood doesn't negate the reality that there will still be some small risk of HIV even when we're on PrEP. And it certainly can't counter the emotions that swirl around issues of HIV transmission and acquisition, whether we live in ignorance or with advanced knowledge of HIV viral kinetics.

For decades, I've had a recurrent dream in which I know that I have HIV but keep testing negative or with inconclusive results over the course of years. And then, at some point, I get a confirmatory test that shows I am indeed HIV positive. And my feelings at that point are complex, but they're something similar to dismay mixed with relief blended with concern swirled with the feeling of having been there before.

I know my individual subconscious chewing over my experiences with risk and life and fear and love is not the same as public health policy, the perennial stigma-fueled attractiveness of scary HIV stories and the 24-hour news cycle.

But, just as our dream lives can be marked by emotions and symbols that override logic and the laws of science and mathematics, we can travel the same terrain when our eyes are wide open.

Until we have a vaccine for HIV that gets to everyone across the planet who needs it, we are going to keep seeing cases of HIV transmission. As we move towards the goal of eliminating HIV, we can slash rates of new HIV transmission through full access to HIV treatment for all people with HIV -- meaning the vast majority will become undetectable, their HIV will be non-transmissible, and their health will have an excellent prognosis -- as well as the growing range of HIV prevention tools such as PrEP.

But to do so, we may also have to confront and acknowledge the lingering fear in our hearts that tethers HIV prevention to stigma, doubt and shame -- and that makes these PrEP-fection outliers loom much larger than they should.

JD Davids is the managing editor for TheBody.com and TheBodyPRO.com.

Follow JD on Twitter: @JDAtTheBody.


Copyright © 2016 Remedy Health Media, LLC. All rights reserved.


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