This article was adapted from comments delivered as part of a panel presentation for “PrEPared: A Community Health Forum”, organized by AIDS Community Care Montreal (ACCM) in November 2015.
In a recent TED talk on PrEP and rectal microbicides, Will Nutland from the London School of Hygiene and Tropical Medicine in the UK reminded us of the ending to the 1989 movie Longtime Companion, where the surviving characters walk along a beach and wonder what the end of AIDS will look like. They imagine it as a big party, where everyone who has died returns in a tearful reunion of hugs and dancing.
He argued that unlike such a Hollywood fantasy ending, there will be no singular “End of HIV” moment. Instead, there will be a series of moments.
1996 was one such moment, when it became clear that with the power of combination therapies, an HIV diagnosis would no longer be the automatic death sentence it once was.
Making reference to PrEP, he argues that we are living in another such a moment right now, a moment so exciting and exhilarating and thrilling that we should be out in the streets dancing.
In fact in 2015, we now have at least 3 safe and highly effective tools to reduce the risk of HIV—condoms, PrEP, and effective treatments that suppress the virus among those who are HIV-positive.
And it’s true that the definitive proof of just how effective these new interventions are in virtually eliminating the risk of HIV did not happen in a singular moment. It came to us in dribs and drabs over a period of at least 10 years in the case of undetectability, and nearly five years in the case of PrEP.
By 2008, there was already enough evidence about the preventative benefits of treatment for the Swiss Statement to declare that someone with an undetectable viral load for at least six months—and no STIs among the sexual partners—rendered them uninfectious. “Heresy!” declared some, but this eventually proved to be true, through the results from a series of studies, announced between May 2011 and July of this year.
The first PrEP trial results were in November 2010, nearly 5 years ago to the day. At first, they seemed mildly encouraging at best, but as more study results came out over the next 5 years—some very disappointing, some remarkably positive—we were able to understand what was going on and see just how effective PrEP could be at providing near complete protection from HIV.
So are we now, as Will Nutland suggested, in a moment so exciting and exhilarating and thrilling that we should be out in the streets dancing? I guess it depends on what we think the impact of the preventative effects of ARVs (PrEP and undetectability) will be on the community, and what is our vision.
Dancing in the streets? Dancing in the sheets?
First, I’d like to share some of my thoughts about what will be the impact of adding two powerful new tools to the one we’ve had for more than 30 years—PrEP and knowing that effective treatment renders people living with HIV uninfectious. I’ll then share some thoughts about the community’s vision.
I want to talk about both PrEP and the preventive effects of treatment because frankly, I think they operate in similar ways in terms of their impact. I also think most of us use HIV prevention strategies in combination at an individual level, and we should think about them in combination at a community and systems level.
I’ve identified eight impacts of PrEP and undetectability on the community, most of which are probably fairly obvious.
1. More of us will have the type of sex we desire.
Whether that’s with a long-time partner, a regular fuck-buddy, a one-time hook-up, a client or all of the above… We want pleasure and intimacy and love and connection. We want hot sex. We want steamy sex. We want to exchange bodily fluids. Sometimes some of us want to conceive. Or at least have lots of fun trying really hard to make babies. We want to be able to relate and connect to our sexual partners without the filter of HIV. PrEP and undetectability are allowing more and more of us to achieve this.
2. Levels of anxiety about HIV will diminish.
This is already probably one of the most widely reported “side effect” of PrEP and of having an undetectable viral load. And I think many of us who have lived with the fear and anxiety for so many years have done so without realizing the extent to which it has coloured our experience of sex, pleasure and intimacy. It’s a bit like the old joke: “Why do you keep hitting your head with a hammer? Because it feels so good when I stop.” We don’t realize the toll years of fear and anxiety takes until it’s gone. Undetectable viral load already started the ball rolling in that regard, and it’s only going to be amplified with PrEP. Many of us have felt at an individual level what PrEP and undetectability can mean for alleviating anxiety, and we’re starting to see what the impact could be at a community level.
3. Rates of condom use will go down.
I know what the studies have told us so far. People on PrEP don’t increase their risk-taking. The studies have not shown an increase in the number of sexual partners, nor have they shown a decrease in rates of condom use. Speaking for myself, I started using PrEP at a time when my condom use had already gone down. Likewise, rates of reported condom use were already going down in many places before PrEP arrived on the scene. So PrEP did not necessarily cause the drop in condom use. But I seriously doubt condom use will increase as a result of PrEP being more accessible. At best, it’ll remain the same. More likely, I think it’ll continue to go down. Already positive guys were having sex with each other as a way to have condomless sex and to avoid the risk of transmission… and the risk of prosecution for that matter. Increasingly, negative guys, including those of us who are no longer consistent condom users, have been seeking out guys with undetectable viral load as a way too reduce risk compared to having sex with another negative guy who might be positive and even in acute infection without knowing it. Adding PrEP to this mix will eventually lead to less condom use in my view. Though for the purposes of HIV prevention, that will not necessarily lead to more HIV infections, since both PrEP and undetectability are so highly effective. Which leads me to my next two points…
4. Rates of HIV will gradually go down—at least in some parts of the community.
With three highly effective ways of reducing risk instead of one, we will see rates of HIV go down. In some places where there is relatively good access to all three interventions, that has already started happening. If the same thing is going to happen anywhere in Canada, it’ll be in Québec, where there is arguably the best access to PrEP in the country. I qualified my statement about rates of HIV going down only in parts of the community for reasons I’ll mention when I speak about our vision.
5. Rates of STIs will continue to go up... or will they?
As rates of condomless sex have gone up, rates of STIs have gone up, and they’ve been doing so for well over a decade—well before the introduction of PrEP or conclusive evidence of the preventive impact of treatment. There’s good news and bad news about this state of affairs. The bad news is rates of STIs will continue to go up. That’s not a desirable outcome. However, what’s clear from the studies so far is that despite high rates of STIs, we’re still seeing no HIV infections among people who take PrEP consistently, and no cases of HIV transmission when a positive person has an undetectable viral load. Also, the current PrEP protocol calls for STI screening every 3 months. That’s a lot more frequent than most people, so if a PrEP user does have an STI, it will likely be caught sooner than it would have been if they had not been on PrEP, and they are removed from the chain of transmission sooner. In my experience, when you’re on PrEP, you’re also much more likely to be consistently offered screening at all three sites—you’re not just asked to pee in a cup, you’re also asked if your throat and ass should be swabbed. This increased vigilance in STI screening may in fact lead to a decrease in rates of STIs. And even if they don’t, frankly I’d much rather be contending with an STI epidemic than an HIV epidemic.
6. The serodivide will weaken.
As I mentioned earlier, many of us have adopted serosorting as one of our prevention strategies. But thankfully, that has not meant only having sex with people of the same serostatus. It has also meant actively seeking out people with an undetectable viral load, and increasingly, people on PrEP. More and more, people are consciously, deliberately and comfortably having sex together—and doing so without condoms mind you—across what used to be a fairly strong serodivide. Combine the reduction in fear and anxiety for both positive and negative partners that comes with using one or more strategies that we know to be highly effective, and that serodivide will thankfully continue to crack, crumble, and hopefully one day fall like the Berlin Wall. However, what’s probably more likely to happen is…
7. A new hierarchy of serostatus will emerge.
Being undetectable has already emerged as a new type of identity, which many distinguish quite deliberately from being HIV-positive. I get the sense that we’re also seeing the emergence of “negative and on PrEP” as an HIV status distinct from just being negative. In both cases, this new HIV status—being undetectable or on PrEP—signals that the person is connected to regular healthcare, is tested very regularly (for viral load or HIV, and for STIs), and is virtually guaranteed not to transmit or acquire HIV. Undetectable and being on PrEP will be in one category. The other category will include those who will be deemed less certain and less “safe”—positive but not undetectable, negative but not on PrEP (especially if they are not tested very regularly), and those who are unaware of their status, who may very well be in a third even less desirable category. We need to be very vigilant about this. There are great risks in having this new serodivide. In many cases, those who are positive and have not achieved undetectability, those who are not on PrEP, and those who are unaware of their status face any number of barriers to accessing services. Which is why we need to keep in mind some of the points I’ll mention in a minute about the community vision for PrEP and undetectability. And finally…
8. More of us—both positive and negative—will be linked to regular care.
We are already focussed on trying to get as many positive people as possible diagnosed, linked to care, and retained in care. As more people get on PrEP, we will also need to be linked more to care. I’m currently seeing my doctor every 3 months. That’s at least 4 times more often than I used to. Besides the ongoing monitoring that goes with being on PrEP, if anything else ever comes up in terms of my healthcare, we are in a great position to address it much more quickly. Is it sustainable to have everyone on PrEP seeing a doctor every 3 months? I doubt it. Nurses and community workers could do much of this, for starters. And I’m not convinced that this frequency of follow-up is required for everyone. Some people may need it. Others may not. I suspect we will start to see a less intense level of engagement with the medical system as we gain more experience with PrEP rollout, and some of our initial concerns about a new intervention are addressed. But regardless, most of us on PrEP will still be in regular contact with healthcare providers, and at a greater frequency than we are now.
So what about the community’s vision for PrEP?
Well, I honestly don’t think we’ve yet come together to articulate a vision for PrEP for our community. The vision—or lack thereof—has so far been largely individualistic. Meaning that many of us have individually imagined what PrEP might mean for us, and we have individually sought out PrEP, because we happen to have the knowledge, self-efficacy, resources, and access to healthcare that allow us to do so.
So here are some of my thoughts about my vision for PrEP and undetectability for our community. The first few points are the same as the impacts I just mentioned, so I won’t comment further on those. My vision is that…
- More of us have the type of sex we desire.
- Levels of anxiety about HIV diminish.
- The serodivide weakens.
- More of us—both positive and negative—are linked to regular care.
- We get tested and treated for STIs much more frequently than is currently the case, thus helping to break the chain of infections.
- Rates of HIV go down among those in the community who have been most at risk. I think we can achieve this not only through the use of PrEP and undetectability as interventions in and of themselves, but also through some of the 5 other efforts I describe below.
- More options. We need more options to reduce the risk of not only HIV, but also STIs and pregnancy. Multi-purpose tools that come in the form of long-term injectables, douches and enemas, lubricants, vaginal rings... That we can use daily, monthly, quarterly, around the time of a possible exposure… A range of tools that will meet the needs and fit the circumstances of people most at risk.
- Combination prevention. PrEP should not be seen in isolation, but as part of a range of interventions that include condoms and undetectable viral load, and that form a combination prevention approach. This includes behavioural, biomedical and structural interventions that address racism, sexism, poverty, incarceration, xenophobia, mental health, addictions, and the criminalization of sex work, drug use and non-disclosure of HIV status.
- Joint advocacy. Treatment activists, prevention advocates and networks of people living with HIV need to come together to work on a joint advocacy agenda that includes things like drug pricing, barriers to accessing healthcare and treatment, and addressing gaps in the cascade of prevention, diagnosis, care, treatment and support.
- Broader social justice. We need to work with other social justice movements to ensure that we address healthcare access barriers, as well as structural and systemic factors that conspire to make some of us in our communities more likely to become HIV-positive, and less likely to be able to access and make use of existing effective interventions, whether we are positive or negative.
- Access for all. We need to ensure that taking full advantage of the power of PrEP is neither limited to gay men, nor only to some gay men. We need to ensure that women, trans men and women, sex workers, and people who use drugs have access. People who face barriers because of age, language, ethnicity, legal status, imprisonment, gender identity, mental health, drug use, socio-economic status, and geographic location—because believe it or not, not all of us live within a 20 block radius of clinics and services tailored to meet our needs.
I said that we had not yet come together to articulate a vision for PrEP and the preventive effect of treatment for our community.
Having said that, a few groups have organized community forums or developed position statements on these topics. PositiveLite.com has published hundreds of articles on this topic. The Warning in Montreal has done a lot of critical thinking on this topic, and has already proposed many elements of a community vision for PrEP. If you’re not already doing so, check out their blog (in French) on a regular basis.
What are your hopes and vision for our community?