Opening up the debate about #PrEP

This year for World AIDS Day, the Wheeler Centre has kindly published a longform article I wrote about PrEP titled ‘The other blue pill’.

I wanted to resist taking a side in the debate ‘Is PrEP good or bad’ or ‘Should we fund PrEP’.  These are phoney debates: we toss around arguments for/against, even though PrEP is going to happen. 

What we’re really fighting over is different ways of framing the problem that lead in different program and policy directions.

As a piece of social science writing, I wanted to leave readers with a couple of different ways of thinking about how those debates are framed. Framing PrEP in terms of ‘who should pay’ and ‘who deserves access’ leads naturally to discussions about limiting access.

We know where that leads.  Victoria has a post-exposure prophylaxis (‘PEP’) program that was funded via block grants to hospitals rather than the PBS.  Funding hasn’t kept up with demand and the use of newer, more expensive drugs.

As a result, we have de facto rationing.  There is no incentive to promote PEP widely in the gay community, and awareness of PEP has remained stubbornly around 65% on the gay periodic surveys.  ‘Repeat presenters’ — people at high risk of HIV infection who we most want to target — report encountering ‘moral friction’ from hospital providers, with remarks like ‘It’s not the morning-after pill, you know!’  The Alfred Hospital has resumed its policy of refusing international students access to PEP — even though PEP isn’t funded by Medicare.

So my goal in the Note is to challenge the implicit logic that makes ‘But should we pay for that?’ a rhetorical question, answerable only in the negative.  I’m walking in the foot-steps of Gregory Tomso’s analysis of public health responses to barebacking:

In his essay “Violence and Metaphysics,” Jacques Derrida … writes of philosophy’s “unbreachable responsibility” to poses questions in such a way that “the hypocrisy of an answer” is not yet “fraudulently articulated within the very syntax of the question.” (p91)

Framing therefore involves symbolic violence: it poses the question in a way that closes off certain answers.  As Tomso notes, “there is also the violence that belongs to wanting to know something about another, the Other, who is not the self” (ibid).

So I didn’t want to argue my case via universalising discourses like human rights, the responsible subject, or ‘we all want the same things really’.

The article describes cultures of sexual adventurism among gay men as one of those laboratories for learning about challenges that face the broader community — such as the sustainability of monogamous relationships and the ethical negotiation of casual sex.

But it also flips the script a bit: instead of pathologising sexual adventurism, it uses major representative studies (HILDA and ASHR) to de-naturalise  heterosexual practices of monogamy and highlight the need for the ideas and practices queer culture is experimenting with.

And it points out the injustice of relying on social innovators experimenting on their own bodies and relationships without providing them with the basic resources needed to do this safely.

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how social change happens

In case the idea of ‘cultural laboratories’ sounds a bit weird, it reflects some thinking I’ve been doing on the side of (recently-concluded) project work with the ‘What Works and Why’ study led by Dr Graham Brown at the Australian Research Centre in Sex, Health and Society.

This thinking considers how social change happens if we understand society as a complex adaptive system: a ‘complex macroscopic collection’ of relatively ‘similar and partially connected micro-structures’ formed in order to adapt to the changing environment, and increase its chances of survival (Wikipedia).

In a 1999 paper, the European social theorist Klaus Eder set out to explain why ‘society learns, and yet the world is hard to change’.  If we can get a bunch of AFL footballers in the room and convince them that homophobia is bad (social learning), why is it so much harder to discourage homophobia as part of the culture of Aussie rules in society (social change)?

Eder suggests that we learn how to overcome social problems in small networks — but that only leads to social change when our discoveries get captured, remixed and amplified through higher-level processes, such media narratives, popular culture, government policy, etc.

In my example, this might occur via the AFL changing the rules to heavily penalise homophobic behaviour.  No doubt this would cause a fair amount of backlash, but that’s part of the amplification process.  The change might occur through public debate triggering similar learning processes and the dissemination of findings across a much wider range of ‘cells’ in the honeycomb fabric of society (clubs, schools, families, etc).

In an earlier post I argued that news coverage alone is pretty unlikely to achieve this, but feature journalism probably does, because it provides enough space to offer an alternative framework for understanding the issue, and it allows the mixture of research, argument and personal narratives.  We’ve become literate in science writing but the genre of social science writing can barely be said to exist, beyond the Gladwells and the Freakonomics of this world.

But even when social learning produces innovative strategies, the achievement of widespread social change is by no means guaranteed.  Different ways of having the debate, as I argue above, can stifle the change process.

We know that major social change tends to happen when learning bubbles up from a particularly innovative network during a ‘window of alignment’ among much larger social processes — such as a media crusade and a tidal swell of popular opinion and a change of government: moments that Kingdon called ‘policy windows’.  That’s why timing is such a crucial part of effectiveness in policy advocacy.

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trying to make social change happen

Having an account of ‘how social change happens’ is not the same as knowing ‘how to make social change happen’.  To be clear upfront, I don’t think there is a recipe you can follow that’s guaranteed to make social change happen.  But there are preconditions we can achieve to make it more likely.

One is to keep the innovation bubbling away in those smaller networks — they are the cultural laboratories of change. If they dry out, you can’t just restart them at will when you need some good ideas in a hurry.

I saw this in action at the first national conference for the Australian Forum on Sexuality, Education and Health, with a panel featuring young queer educators talking about trigger warnings, activities for teaching affirmative consent, etc.  Some of the strategies sounded impractical to me, but practicality is not the point: experimental intensity is the point.

Second, we need a middle tier of project workers, researchers and policy advocates, who are paying attention above and below, identifying and validating good strategies from the laboratories and thinking about how to package them up, so there are policy options ready to go when those windows of opportunity appear.

Both of these suggestions depend on our health and welfare systems and the human services sector having enough resources flowing within them to support redundancy, which is essential for diversity.  Without that, you don’t get the multiple competing ideas that are essential for innovation.

Nine reasons why I don’t give a damn

…about your ill-informed ‘personal opinion’ about PrEP.

Writer and lecturer Conner Habib, author of this great piece about sex-phobic reactions to his work in gay porn, today posted a link on his twitter feed to this sex-phobic piece about PrEP.

In August 2009, I went to the National LGBTI Health Summit in Chicago and took part in a panel on HIV stigma with Erik Libey and Tony Valenzuela, talking through some work I did on behalf of the Australian Federation of AIDS Organisations.

The summit included another great panel on bareback porn, recorded by Feast of Fun at the Center on Halsted. It was great to be there and talk with my North American colleagues about HIV risk reduction strategies, rectal microbicides, the Swiss Statement, and a new application of HIV treatments just entering clinical trials, called PrEP.

I had the great privilege of spending some time in conversation with Tony, subject of the Rolling Stone article “They Shoot Barebackers, Don’t They?”, and Amber Hollibaugh of Queers for Economic Justice.

We talked about the emotional sustainability of working in HIV prevention for AIDS service organisations (ASOs). The puritan, sex-phobic culture of North American public health practice makes too many things unspeakable and leads to a performance of evidence-based practice that chokes off funding to community-building strategies that actually work.

The result is pent-up frustration and, every few years, it is unleashed in a community-, sector-, and nation-wide cataclysm centring on some issue that, by a process of metonymy, is made to stand trial for everything that’s wrong with HIV prevention.

Tony had been the touchpoint for an earlier firestorm around the first public acknowledgment of bareback cultures in the mainstream media and his efforts to single-handedly establish the now-unremarkable category of the HIV-positive porn star.

There was concern at the time that a similar process might start up around non-condom strategies for HIV prevention. Sure enough, five years on, moral entrepreneurs like Michael Weinstein from the AIDS Healthcare Foundation are engaged in a concerted effort to spark off a national panic about PrEP, and there’s an emerging divide among gay men that threatens to crystallise into stigma.

This is staggeringly unhelpful, as the case of barebacking will demonstrate: even as behavioural surveys showed unprotected sex with casual partners increasing, gradually but steadily, in every developed country that collects the data, ASOs struggled to promote messages about how to reduce the risk during non-condom sex, because the moral panic about barebacking in the gay community and mainstream media made even the most cautious messages controversial.

Note that I’m not taking a position on casual non-condom sex: just saying that if it’s happening, ASOs should be able to respond honestly and effectively, and the strongest response is a strategic combination of messages. The drum beat is condom reinforcement (and promoting negotiated safety) for those who only do it occasionally with casual partners (or more regularly in relationships). The melody is a cultural narrative around the changing nature of HIV. The instrumental solo is reliable information about non-condom risk reduction strategies for people who, as a matter of disposition or personal difficulty with condoms, prefer exclusively non-condom sex.

In a short and altogether predictable exchange of views on twitter, I was challenged to engage more fully with the nine reasons given in the article Conner tweeted. So here goes: why I don’t give a damn if one person says he will never, ever use PrEP. (His reasons in bold.)

  1. Money. Just because your health insurance doesn’t cover it now, Zach, doesn’t meant it never will. If you have trouble using condoms, it’s a lot cheaper to pay for you to take PrEP than for full HIV treatment after you seroconvert. In particular, it will be a lot cheaper in 5 years when the patent monopoly on the key drug Tenofovir expires.
  2. Trust in pharmaceutical companies. Zach says he’s skeptical because Gilead makes HIV prevention and treatment drugs. There’s a missing premise here, explaining why that’s a problem. But in fact it’s the same drug used for both purposes.
  3. Zach likes condoms. Good for you, Zach. Not everyone does. The hidden premise here is that Zach thinks gay men are going to be choosing between condoms and PrEP, when in fact PrEP is likely to be used by men who either cannot or choose not to use condoms.
  4. Zach is forgetful. This is a pretty good reason for Zach not to use PrEP. In the iPrEx study, although 93% of respondents said they took the drug everyday on time, monitoring drug levels in their blood suggested only 51% actually did. [reference] There are now trials underway exploring alternative dosing strategies for PrEP agents, such as monthly injections and slow-release implantables.  There is actually a huge amount of knowledge about how to solve this problem, if we only looked at research into hormonal birth control practices among women.
  5. Side effects. Everything from joint pain to kidney problems have been reported. Also: Nausea, diarrhea, and skin discoloration.” Truvada has been studied for PrEP because it has the fewest side effects of any combination treatment. Its side effects include bone mineral density loss leading to increased risk of bone fractures, and kidney problems, both of which can be monitored.  The other side effects Zach mentions are from different drugs not used in PrEP.
  6. Truvada makes it harder to find somebody to fuck. A drug most people take in order to have safer bareback sex “limits me to only having sex with men willing to go bareback.” Well, in practice, yes — but there’s no reason someone taking PrEP could not also use a condom.
  7. The difference between condoms and bareback sex is negligible to Zach. Zach did something rather slimy in this piece: he frames it as “personal reasons why I will never, ever use PrEP”. That’s just a pretext to write a bunch of stuff about how PrEP sucks. Why bother doing that if you’re already determined never to use it? The use of the second person voice in the point gives the game away: this is really about what Zach thinks other gay men should do. He writes: “If wearing a thin layer of latex is that difficult for you, maybe your problem is psychological, not physical.” (Emphasis added.) The question I’d pose in return is: so what if it is psychological? Or cultural? Or emotional? Or even just that you prefer raw sex? 
  8. The science is still out. Zach imagines a scenario where, out of the 2499 gay men who took part in the iPrEx trial, only the half who were not receiving the placebo somehow figured that out and only had sex with negative men, and that’s why they had fewer HIV infections than those who received the placebo. This betrays ignorance about how clinical trials work but also gay men’s sexual cultures. Most of the men in the trial and control group would have sought out self-declared HIV negative men for bareback sex; it’s called serosorting and it’s not new. If serosorting worked as perfectly as Zach imagines, however, we wouldn’t need PrEP.  We need it because some proportion of the men who think they’re negative are not — they’ve been recently infected and their viral load is sky high.
  9. The risk of other STIsZach lists a bunch of STIs, including syphilis, herpes and HPV — which are, newsflash, not prevented by condoms, since they can be spread by skin contact with a lesion not covered by a condom. Many people wrongly assume that condoms prevent any STI transmission. In fact, they mainly prevent HIV transmission.  Bacterial STIs like chlamydia and gonorrhea can also be passed on via oral-anal contact during rimming and oral sex without a condom. That’s why we recommend testing for HIV and other STIs at least once a year and every 6 or even 3 months if you’re a really busy boy.

Ironically, one of the things Zach counts against ‘the science’ on PrEP (at point 8) is the prevention effect of HIV treatment among known-positive partners, which is another one of the risk reduction strategies we were talking about at that conference in Chicago.

Neither one is new, exactly. We’ve known since the late 90s that HIV treatment in positive people probably reduces transmission efficiency. Negative people have been prescribed a month-long course of HIV treatments as post-exposure prophylaxis (PEP) since the early 90s, and PrEP is just ongoing PEP. So why did it take so long to consider studying and formalising them as HIV prevention strategies?

Two main reasons. The ‘bareback wars’ made non-condom risk reduction strategies unspeakable. The bareback wars were due, in turn, to people, both gay men and public health practitioners, forgetting that the goal of HIV prevention is to prevent HIV infections using all the means available, not to promote a religion of consistent condom use and demonise those who don’t adhere to it.

Wrap post for @WeMelbourne

I’m writing this with a powerful sense of tweetus interruptus, as I’ve hit the daily tweet limit for the @WeMelbourne account HALFWAY THROUGH A CHAT ABOUT HIV-POSITIVE AND NEGATIVE OBLIGATIONS AROUND STATUS DISCLOSURE.

Lot of people now tweeting at me ‘condoms aren’t 100% effective you know, it would be irresponsible not to disclose’ or variations on that, implying that a positive person who keeps their status private is being dishonest.  And I can’t reply and boy it’s killing me…

READ THIS, please:  HIV scandal on Jack’d: Boy, that escalated quickly!

This is why I don’t believe positive people have an obligation to disclose to random strangers if they’re only talking about having safe casual sex.  There is just no way to predict how someone is going to react, and some people react in vindictive, over-the-top ways that can result in a total loss of control about who knows your status.

Positive people themselves talk about feeling an obligation to tell their partner in an intimate, ongoing relationship, but there are different schools of thought on when to do it.  Some will do it on the first date, so that rejection hurts less if it happens, but that’s going to make first dates even more nerve-wracking than usual.  Others will wait until trust has developed and then disclose, but some negative partners react very badly to this, feeling they have been ‘deceived’.

Australia’s National HIV Strategy makes it clear that both HIV negative and positive people have a responsibility for prevention.  That means we can’t just talk about what the HIV positive person’s obligations are.  We need to do more for negative people to help them overcome fear of HIV and learn how to manage HIV disclosure when it happens.

Biomedical prevention: a revolution with empty streets

This post responds to Kane Race’s invitation to comment on PrEP as a provocative object. As this is a blog about prevention strategy, I want to look at the discursive context in which this object is being offered to gay men. PrEP has been posed as part of a biomedical revolution in HIV governance.

The revolution is offered as the solution to three failures:

  1. Of condoms to completely prevent HIV transmission;
  2. Of gay men to use condoms all the time as required by (1);
  3. Of social marketing and community education to achieve (2).

The revolution is being sold to political purchasers (who provide needed funding, policy support, regulatory sign-off) as the way to achieve ‘bold targets’ — in the United States, an ‘AIDS free generation’, in Australia, ‘Ending HIV by 2020’.

The logic is that policy countenancing anything less than 100% condom use is politically unpalatable, but desperate measures are needed: crisis framing and battleground metaphors, you know the drill.

But premising the revolution on the failure of education leaves it in an odd position when it comes time to sell it to the population, i.e. the assemblage of social networks and identities formerly known as the Gay Community.

I’m reminded of two earlier revolutions:

  • Negotiated safety, or the ‘Talk Test Test Trust’ campaign, led by ACON in 1996. The first time the HIV sector admitted to the gay public that non-condom strategies could be effective as HIV prevention. It followed intense debate in the HIV community sector over whether this was a step that should be taken and how to codify the strategy in a clear and simple message to reduce the risk of failure (McNab, 2009). Unlike in America, where some HIV doctors to this day recommend monogamy in and of itself as a prevention strategy, the Australian pedagogy on negotiated safety acknowledges and responds to the diversity of relationship types, different extents of being ‘open’, uncertainty (‘are we going steady?’), and ‘infidelity’, by emphasising both relationship agreements and ongoing communication.
  • PEP roll-out, when the availability of Post-Exposure Prophylaxis was first publicised to the gay community in Victoria in 2005.  The State Government funded the Alfred Hospital to develop a service, which initially saw gay men going to the Infectious Diseases clinic during business hours or the Emergency Department after hours.  The Alfred then contracted the Victorian AIDS Council to develop a social marketing campaign after the fact.  This treats social marketing as a fancy name for ‘advertising’, rather than a consumer-centred analytical approach that can contribute insights at every stage from designing an accessible service to motivating people to use it (see Lefebvre, 2013).

    Social research has subsequently shown much higher awareness and uptake of PEP in Sydney compared to Melbourne, with Sydney providers welcoming ‘frequent flyers’ (as one clinic director put it, ‘better for someone who struggles with condoms to remain HIV-negative’), while Melbourne providers were more likely to be judgmental (‘it’s not a morning-after pill’).  In Melbourne, doctors at gay community clinics now provide access to PEP in partnership with the hospital-based service, saving a trip to the E.D. and providing far greater ‘cultural safety’ to people accessing it.

The takehome message? Engage with community educators and stakeholders from the very start.

That’s not happening with the ‘biomedical revolution’.  Why would it?  See failure (2): ‘education has failed’.

The biomedical revolution in Australia has more or less ignored PrEP — it’s still subject matter for policy analysts, the position you have when you’re not planning to do anything.  It has focused instead on early detection and early treatment.

Analytically speaking I’m a functionalist: I don’t look at what organisations say, I look at what they do.  That’s essential in this era of strategic communications.  Take focus groups, the mandatory starting point for any new project or campaign.  It says ‘community consultation’ on the tin, but open it up: you’ll find market research, undertaken in private, intended to extract information, not have two-way dialogue.

Or take campaign websites, like the one for Ending HIV: the label says ‘interactive’, but the functionality is restricted: click here, add your name to a pre-written message, sign up to receive messages.  Visitors are offered a subject position that is wholly passive: trust us, we’re the experts.  Sign here to indicate your consent.

I think gay men are smarter than that, and I’d expect them to remain more or less disengaged from ‘revolutions’ that started without them.  On a hunch, I did a quick free-text search on Recon.com, one of the largest sites for men into kink and fetish.

As any user of personals sites knows, meeting other men is only part of their purpose; they are equally important as a safe space for fantasy and identity play. I searched for the term “prep”, as the search functionality isn’t case sensitive. I was curious to see whether HIV-negative men are responding to PrEP as a provocative object by taking it up in this form of play, or as part of their ‘bid’ to other men to meet for different kinds of play.

  • Eighty-eight profiles had ‘prep’ across two separate searches on username or profile text (I didn’t de-dupe, as I’m not doing research and didn’t want to make a table cross-referencing usernames–too creepy).
  • Six profiles were clearly talking about PrEP i.e. pre-exposure prophylaxis, some inviting people to ask them about it, one describing his reference as (paraphrase) an obligatory community service announcement.
  • Seventeen used it to mean preparing or preparation, sometimes as part of the sexual fantasy encounter.
  • Fifty-one profiles referred to prep as a look: a conservative, buttoned-down aesthetic derived from ‘prep school’ and sometimes contrasted with other aspects of identity such as kink or punk or ‘jock’ (athletic).

In this Not-Research exercise I’m more interested in the diversity of usages, but the numbers tell a story as well — we’ve a long way to go before there’s anything like ‘revolutionary’ visibility of PrEP in relevant spaces like this one.

The danger is not that lots of people hear about PrEP and want to give it a go; the danger is that they don’t — that we miss this opportunity to discuss as a community what it will mean to live with endemic HIV.

Instead, we have a revolution from the top down — from the privileged speaking positions of biomedical science and population health — rather than one in which community is involved from the very beginning.

It is framed as an epic battle — ‘bold targets’ and fuck yeah science! — instead of as a mundane and everyday matter of epidemic governance and community health.

And instead of accepting that all prevention strategies are partially effective — including condom use — those who become positive are seen as signs of failure.

This isn’t revolution.  It’s the unsustainable same old.

New paradigms

I’m in Sydney, sampling a day of the Australian sexual health and HIV medicine conferences.  Most of the really exciting social research is presented these days at biomedical conferences, because they are prestigious.

Working in the community health sector, a day is all my PD budget can afford, unless I approach a pharmaceutical company to sponsor my attendance. It’s a big problem if community workers can’t afford to take part, because we need that knowledge too.

Graham Hart from University College London just gave an incredibly lucid presentation on the change in paradigm he’s seeing in HIV prevention.

Where research used to focus heavily on individual behaviour, and how it interacted with the biology of STI, now we’re looking at the behaviour (and structure) of people in groups, and the overall ecology of STI, plus time,  because epidemics change as they ‘mature’.

In the past decade, we’ve seen a very mild upward trend in the number of men who have unprotected sex with casual partners.  Hart puts up UK data showing about 20% of gay/bi men had this kind of sex in the previous year.

He puts up another slide showing the number of men who report ‘serosorting’ (deliberately choosing a partner who reports the same HIV status for unprotected sex) has increased from about 7 to about 18% in the past decade.

This he attributes to the impact of the Internet, although I’m told serosorting showed up in Australian data from the 1980’s — almost as soon as the HIV antibody test became available.  My guess is that serosorting is not, actually, a new development; having a name for the phenomenon is what’s new.

This is why we need a sociology of HIV prevention research and practice, since there are trends and patterns in how long-existing practices ‘in the real world’ get named and tagged as the ‘next big thing’ in HIV prevention.

In fact, Hart touches on this issue.  He talks us through a range of new approaches, including biomedical and ‘social structural’ interventions.

Biomedical techniques include circumcision, lubricating gels with anti-HIV ingredients, and pre-exposure prophylaxis (PrEP) which is basically taking PEP before you fuck unsafely.

Hart points out that even circumcision, the most effective biomedical intervention found to date, is less effective than consistent condom use.

He tells the audience, “don’t give up on condoms just yet.”

I couldn’t agree more.  With Ford Hickson, I’m very, very skeptical of the claim that “condoms are failing”.  Ford points out that people who say prevention is failing want it to fail so they can take the money and do it themselves.

(And not because they’re bad people.  That’s just a consequence of how funding processes put us in competition, not collaboration, with each other.)

Instead, our benchmark should be about 70-80% of gay/bisexual men practicing consistent condom use during casual sex… or maybe even most of the time. That’s about the best any country ever been achieved.

Setting that benchmark lets us ask how we divide up and target the rest.  Only 1-2% of them are the “barebackers” that 99-100% of media coverage and community debate has focused on.  The rest are just guys who occasionally have unprotected sex.

That includes me, by the way.  Once, ever.  With a guy in a sauna.  It was his first time being fucked.  We knew and liked each other.  I knew he was a consistent condom user with his other partners.

With these ‘occasional’ guys, as Michael Hurley says, the infrequency of the occasions is a marker of their general commitment to safe sex.

When it is infrequent, although there are fewer occasions of risk, the intensity of risk might actually increase, because those men have less practice in risk reduction techniques that can help prevent HIV transmission during unprotected sex.

And if it occurs without planning, they may not be prepared to ask questions about their partner’s history of occasional unprotected sex and sexual health testing.

There have been resources in Australia that talk about those ‘risk reduction’ techniques, such as HIV-Positive Gay Sex (AFAO), but nothing I know about that has talked honestly to gay men about occasional unprotected sex.

We really need to start doing that, and I’m hoping tomorrow’s policy forum on “HIV from Epidemic to Endemic” will help start that conversation.

In closing, I want to ask a provocative question.  It picks up on Hart’s message “don’t give up on condoms just yet.”  He wasn’t talking to gay men.  He was talking to an audience of people working in sexual health medicine: doctors, nurses, researchers, and policy people.

Here’s my question:  is it possible we might be pushing for biomedical interventions that are less effective than condoms just because professional audiences are bored by hearing about condoms?