How are we talking about non-daily PrEP?

The most common form of oral PrEP is daily dosing — but it’s not the only game in town. In guidelines launched at the recent International AIDS Society conference in Mexico, the World Health Organisation endorsed what it calls ‘event-driven’ PrEP, and the CDC has endorsed ‘consistently’ taking at least four pills per week. While the evidence supporting non-daily PrEP is rock solid, the language we use to talk about it remains unsettled.

Through my work on the Rinse and Repeat campaign, I have first-hand experience of the language challenges posed by non-daily dosing, and with this post I want to raise them for discussion in the global HIV prevention community.

My perspective in this post reflects the communities I work with and belong to — queer people, trans folks, gay and bisexual men and other men who have sex with men (GBM), and people from migrant and refugee backgrounds (and all of these categories overlap all the others).

(Sidebar: I personally identify as a queer nonbinary person who does ‘gay male’ drag when it helps me connect with the communities and colleagues I’m working with. I’ve felt that disconnect since 2004, and this is my coming-out post. My gender is Daniel, my pronouns: just call me Dan.)

Two kinds of non-daily dosing

There are two approaches recognised by the WHO.

• Taking two pills at least two hours before sex, and then another pill every 24 hours after that, until two days after your last sexual encounter. The WHO calls this ‘event-driven PrEP’ and ‘2+1+1.’
• Taking a pill on the same four days each week, e.g. Tues & Thurs & Sat & Sun. (Someone needs to make that a t-shirt.) Also known as ‘T&S’ dosing. This is implicitly endorsed by the CDC but not endorsed by name.

Event-based PrEP

This approach is called different things in different places. It has been called on-demand, event-based or event-driven, intermittent or episodic, ‘disco dosing’ and 2+1+1. The approach was first proven to work by the IPERGAY study in Paris and Montréal, and in French, it’s ‘on demand’ PrEP. That’s what it’s commonly called in the UK as well.

Recently, with funding from Dynamix and help from some creative mates, I developed a resource that illustrates the first approach. The dosing schedule is surprisingly complicated — we often describe it in a single sentence, but when you diagram that sentence out (nerd alert), it involves more than seven discrete pieces of information, some of them relative to each other.

One of the few pieces of communication psychology everyone knows is the 7±2 rule — i.e. most people struggle to hold more than 5-9 pieces of information in their head at one time. And that’s just to remember them; the dosing schedule requires you to process them.

So in the Rinse and Repeat resource, we broke down the dosing schedule into six easy steps that anyone can follow. The short film introduces the broad concept and people can visit the website to find the six easy steps.

In that project, after a fair bit of discussion, I went with ‘event-based’ PrEP. It’s not catchy at all and that’s physically painful to me. The main alternative was ‘on-demand’ and that wording is both catchy and agentic.

And my concern is that people hear the name ‘on-demand’ and think they understand how it works. When I talk about the project, people who weren’t familiar with EBP often said ‘so you only take a pill when you have sex?’

In this case, on-demand means as-needed, but in everyday usage ‘on-demand’ usually means at-will, i.e. whenever you feel like it.

Educators are already telling me they are hearing from people who have messed up the dosing schedule because they didn’t understand it clearly when they started.

The WHO has gone with event-driven instead. They didn’t consult me. Again. (It’s okay, I’m fine, I’ll get over it. Eventually.)

But they also went with 2+1+1. I understand this label comes from PrEP roll-out workshops and focus groups with heterosexual folks and people in low-income countries. Again, it’s catchy and it gets the idea across… kind of. It leaves out the timing, which is pretty important information.

I have the same concern that someone might hear it and think they understand it without further research. In the Rinse and Repeat campaign, I went with the slightly jargon-y ‘event-based’ naming because I want people to google it up before they try it out.

The other problem with 2+1+1 is that it embeds a very heterosexual model of sexual life. Sex once a week on Friday after the kids have gone to bed, one and done. It leaves out people who have more than one encounter (or more than one day of encounters).

With EBP, you take a startup dose of two pills, then a follow-up dose every day, around the same time, until two days after your last encounter. Calling it 2+1+1 obscures the fact that if you keep taking a daily follow-up dose, event-based PrEP can protect you for a week, a month, or a whole season of sex. (Shout out to my peeps enjoying summer in Montréal!)

Anticipation, not planning

In my home country of Australia, campaigns about PrEP have universally focused on daily dosing. I’ve argued that ‘take the pill every day’ has become the new ‘use a condom every time.’ The evidence shows it isn’t required — in the iPrEx trial, nobody seroconverted if they were taking at least four tablets per week. But some people are just uncomfortable thinking about sex outside of a prescriptive normative framework.

So while we knew from the IPERGAY study that event-based PrEP is a thing, people talked about it in a very specific way that implied it’s dubious or only marginally relevant. They say it’s only suitable if you can plan your sex life in advance.

And everyone wants to think of themselves as spontaneous.

The Rinse and Repeat campaign emphasises the flexibility of EBP — the tagline is Whatever comes your way, ‘from an occasional fuck to the occasional fuckfest, event-based PrEP has got you covered.’

And instead of talking about planning, we talk about anticipation — if you’re feeling frisky and you think you might be getting some later today, take a startup dose now. If sex doesn’t happen, no harm no foul.

Exactly the same meaning, without the disparaging connotation. EBP was first tested among sex pigs in France. Les cochons were having a lot of sex. They certainly weren’t scheduling their fucks in dainty little date books. During the IPERGAY study and since, there have been no seroconversions among GBM doing event-based PrEP in France.

Cis women and trans folks

This is really tricky and I want to take a moment to put my remarks in context. In the late 80s and 90s, HIV social researchers described how the epidemiology of AIDS was challenging what Michael Warner has called the ethnic model of LGBT civil rights movement — the notion that ‘gay’ or ‘lesbian’ is comparable to an ethnicity, a relatively self-contained community defined by a common identity and shared culture.

Except there were people being diagnosed with HIV, who identified as straight men and were having sex with men. Or lesbian women who were having sex with gay men. And trans folk, whose lives were not and still are not (IN! TWENTY! NINETEEN!) reflected in epidemiological questionnaires.

The lesson from that was: talk about sexual practices, not identities. (If heterosexual people learned one thing from sex ed, it was “AIDS affects everybody.” Well-meaning but a gigantic distraction from the fact HIV impacts hardest on oppressed and underserved communities.)

In my PhD, I document the way in which the Australian health promotion response to HIV began targeting collective social forms, such as networks, sexual cultures, and communities from the late 1990s onwards. This followed (s l o w l y) after social research that identified particular practices, such as use of crystal methamphetamine, and the practice of fisting, are not independent causes of HIV infection; instead, they are markers of sexual cultures and interpersonal networks with higher HIV prevalence and increased (though quite nuanced) practice of unprotected anal intercourse. So I might refer to sex between men and gay culture in the same piece, talking about different things (a sexual practice, a cultural form) in each case.

When we wrote the first draft of the Rinse and Repeat, I didn’t want to single out trans people or cisgender women — because the diversity of people, bodies, lives and experiences isn’t reflected in those broad labels. Instead, we used positive language, saying that EBP offers protection from HIV transmission during anal intercourse only.

However, there’s now evidence that feminising hormones might affect the way the drugs in PrEP are metabolised, which could, in turn, mean that four pills per week are not enough to achieve protective concentrations. We also know that it takes a lot longer to reach protective concentrations in the urinary tract of people with vaginas/front holes, so EBP does not provide protection for vaginal or front-hole intercourse.

(In both cases, we recommend taking a daily dose for 28 days before having condomless intercourse, rather than doing EBP or T&S dosing.)

So I want to hear your thoughts on: how do we talk about these variations in the protection offered by EBP?

As a communications person, I think it’s simpler and therefore easier to understand if we say ‘we recommend daily dosing for trans folks and cisgender women.’ That’s a positive alternative recommendation and avoids a negative and exclusionary framing (e.g. EBP is not for …).

In this usage, the labels ‘trans folks’ and ‘cisgender women’ do not comprehensively identify all the bodies and practices that EBP won’t work for. In a short message (in a voice-over or across the top of a website) they may function as a sensitising device. If you were not assigned male at birth (AMAB), even if you don’t identify with either label, once you know that protection may vary by trans experience and cis-female embodiment, you know that some further research may be warranted before starting EBP.

(IDK, maybe all this dancing around is just me trying to avoid admitting that this is yet another medical innovation that only benefits cisgender men.)

Your thoughts, please.