Prevention Strategy

What we don’t talk about when we talk about PrEP

Guest post by Steve Spencer, from his presentation on a consumer perspective on PrEP to the 2019 Australasian HIV Conference in Perth (edited for publication by Daniel Reeders)

Conversations changed my life as a PrEP user, and that’s why I’m really excited to bring the consumer perspective to the conversation about ending HIV. Before coming, I asked my social media community for insights. What do they want to tell you? What do they want to hear from you? And what do they demand as PrEP users? I asked them what is good and what is bad, what their hopes are and what their fears are. The lived experience of PrEP is deeply personal and more complex than these binaries, so this is just a snapshot.

We all know the frequently asked questions, we know the topics du jour surrounding PrEP. So I will start by drawing attention to the less discussed topics that, as we approach majority coverage of PrEP in ‘at-risk’ groups, are becoming issues the HIV sector must address.

I am now a person living with HIV, and I can’t help but speak from a dual perspective. As a sector — as a community, in fact — we understood that some people would get HIV when condoms were the only prevention tool we could offer guys who wanted, as they say, to fuck raw. But we are so far away from accepting that PrEP users can get HIV too.

The ‘age of PrEP’ as the ‘end of HIV’, as some see it, presents myriad challenges for those who seroconvert — in rare cases where medication has failed, or more commonly, cases where education hasn’t got through or the regimen hasn’t been doable. Whatever the reason, PrEP users who seroconvert are facing old stigma with a whole new intensity — and this is unacceptable.

PrEP has uncovered the hidden demographics of new diagnoses, and they tell us we won’t be ending HIV any time soon. So any discussion about PrEP and its enormous, mind-blowing success, has to be tempered with the reality that many people aren’t benefiting from it yet, many people will get HIV in the future, and people with HIV are still living with stigma and still need support and respect.

So, what’s the good news about PrEP?

Other than the excellent news it works exceptionally well at preventing HIV, PrEP users are excited that PrEP use is growing and becoming more dynamic. It’s more common to find partners who share the lived experience of being a PrEP user. I remember how difficult it was being an early adopter — all the fears that I had to constantly assuage in others.

Also, static and conservative clinical guidelines are finally relaxing. Use of on-demand, or event-based PrEP is growing and is slowly being endorsed by clinicians as an option. Importantly, our diverse communities with diverse behaviours and diverse prevention needs are beginning to find and share the diversity in PrEP use. They have options for using PrEP that adapt to the uniqueness of their lives. This is truly groundbreaking. We talk about the HIV preventative ‘toolbox’, well, we’re discovering that PrEP is the cordless screwdriver with many different heads.

In terms of access, it’s getting easier and easier to access PrEP. Whether it is through the PBS or online, there are many price options and access options. I would particularly like to draw attention to the innovative 3-for-1 schemes available at a few Melbourne pharmacies, where you get 3 months (a standard script) worth of drug for the price of one month, thanks to a charitable organisation. And we demand greater roll-out of these sorts of schemes – with the listing of PrEP on the PBS, access through many pharmacies became less affordable than buying it online, and making PrEP cheaper should be a goal for pharmacies.

What’s bad about PrEP?

We’re not getting women. We’re missing heterosexual men and bisexual men who aren’t community attached. We’re swinging for but missing trans people. We’re not reaching out to Indigenous communities. We’re missing culturally and linguistically diverse people and overseas-born men who have sex with men. We’re swinging for but still we are missing international students. Clinicians and researchers and health workers see it in the statistics, and we all see it in the changing demographics of new diagnoses. PrEP-users acknowledge this gap and they are also the perpetrators of the stigma against non-users. A gap is being created between PrEP users and non-users, and over time division will be felt in our community.

While it can be argued that PrEP is shrinking the serodivide between negative and positive people, there is undoubtedly miseducation, misinformation, and plain old stigma and discrimination against people living with HIV by PrEP users. Persistent stigma against people living with HIV during this period of significant growth in PrEP use is a scourge – when you see ‘PrEP 4 PrEP’ written on a Grindr profile, this isn’t a sexual preference, it’s a failure of education. It harms the entire community, and those scared men are being let down, because they are not getting support to embrace the science and the life-giving U=U message that should be welded to the PrEP message.

At a practical level, the discussion about cost needs to continue. The medication itself can be relatively cheap (depending on your access options), but doctors and pathology are not cheap. If we are to achieve a greater number of users to help bring down HIV diagnoses, we need to make it as easy as possible to access the entire PrEP combination to ensure positive health outcomes.

As a final point about what we can improve about PrEP, we continue to see doctors misunderstanding PrEP and the unique needs of their patients. When a doctor doesn’t support you to use PrEP, you’re disempowered to protect yourself. They tell you: ‘I’m sorry, we do not promote that behaviour, you are on your own.’ And that’s a problem. Would-be PrEP users experience friction and discrimination from clinicians, and this is a particular problem for people outside of community-attached gay and other MSM — the groups I mentioned earlier. We battled that resistance to daily PrEP and won, now we have that same fight all over again with event-based PrEP. We’re even seeing people report feeling judged when they cease PrEP use.

Prevention decisions are personal choices. They should be informed, but not judged. We should not underestimate the ability of individuals to access cutting-edge information and apply it to their own needs in real time — and to share it, thoughtfully, with their mates. These people need to be supported to achieve the best outcomes. I have experienced this personally, when you’ve done the research, you know your options, and your doctor says you’ve done the wrong thing. I can tell you it leaves you feeling confused, it leaves you feeling awful.

What are the fears of PrEP users?

PrEP users are still afraid of HIV. It is really sad to say. They are still afraid of people living with HIV. It only takes a glance at any online PrEP forum to see the level of fear that persists amongst PrEP users, even among some long-term users. Intergenerational trauma and intra-community division will take a long time to dismantle – a blue pill doesn’t make it go away.

As PrEP use becomes more mainstream, people starting PrEP often don’t fully understand or engage with the science. Where is our education going wrong, especially around other STIs, when PrEP users are still oppressed by anxiety and fear (and projecting these fears onto others)? Many users still understand HIV as an abstract concept. Speaking personally, what I learnt about HIV after my diagnosis shook up my preconceived notions about what it’s like to live with HIV. More importantly, it taught me how I can be a better PrEP advocate; it has given me a keen eye for the fault-lines in our approach to PrEP and its place within HIV prevention. When we are operating in competition or in silos, we are not working together and it is prohibitive to our goals.

What are the hopes of PrEP users?

Hope is my favourite topic right now, because there are so many areas of current cutting edge PrEP research that offer reasons for hope. PrEP users want to see injectables, they want to see implants, they want to see a vaccination. These are currently visible on the horizon and they are the future that PrEP users demand soon. We knew, years ago, that taking a pill every single day to keep you safe from HIV would become a thing of the past. Medical innovation will improve on PrEP as we know it, make HIV prevention more simple, more available, and more suited to each individual. Just like the first participants in the early PrEP studies, HIV negative want to do what it takes to make these advances a reality.

PrEP users, like the rest of us, hope for the end of HIV. This can only be achieved with the full endorsement of U=U — the combination of PrEP + U=U is a formidable force to end HIV. We need to listen to HIV positive voices on how this can be achieved. As a young PrEP activist in Melbourne five years ago, I learnt everything I know from people living with HIV. They were formative in how we adapted the PLHIV playbook to the needs of PrEP users and prospective users. This legacy must continue.

We have done an amazing job in Australia and we are world leaders in responding to HIV, from everyone working within the sector, to the grassroots movements and organisations that changed the culture around PrEP and made space for the science to work, to the individual PrEP users that took that first leap of faith. I know faith has very little to do with science, but now the science is in, PrEP users have faith in PrEP, and they have faith in our abilities as a sector, so it’s time to build on our success. We let everyone down when we don’t educate properly on PrEP.

YEAH, nah.

There’s a campaign doing the rounds on twitter to #SaveYEAH, referring to an organisation in my field called Youth Empowerment Against HIV/AIDS.

This weekend, Jill Stark wrote about the campaign in The Sunday Age, and the paper also ran an editorial on it, both linking the ‘defunding’ of YEAH to attacks by the Christian right wing of the Liberal-National government on the Safe Schools Coalition Australia.

Screenshot 2016-04-25 15.52.27 — (source)

In fact, as a member of the Ministerial Advisory Committee on BBV and Sexually Transmitted Infections, YEAH CEO Alischa Ross most likely knew in advance that the entire funding stream was being replaced. An ‘Invitation to Apply for Funding H1516G007’ for a new stream was released in November 2015, which included $1.3m for web, app and social media resources targeted people under 30 about sexual health.

Although it knew about the new funding arrangements from November 2015, the #SaveYEAH campaign did not begin until an initial tweet on 14 April 2016. Rather than a ‘defunding’ it seems more likely that YEAH was unsuccessful in applying for funding under the new stream.

The article quotes Anne Mitchell and Michael Carr-Gregg (who is not, to my knowledge, an expert on sexual health promotion) claiming the funding decision is ideological:

They claim YEAH (Youth Empowerment Against HIV/AIDS) is the latest victim of an ideological agenda pushed by conservatives who believe teaching students about sex and sexuality from an early age is dangerous.

“There’s a lot of kowtowing to right-wing activists at the moment and you’d have to say that defunding of YEAH is part of that agenda too,” Anne Mitchell, emeritus professor at La Trobe University and one of Australia’s leading authorities on sexual health and education, said. (source)

This does not stand up to factual scrutiny. The decision to replace YEAH’s face-to-face approach with one based on social media was clearly taken months before George Christensen MP began attacking the Safe Schools Coalition in February 2016.

The Age editorial went further:

The Coalition plans to slash the program’s $450,000 annual budget and instead make information available online.

How sadly ironic. The way modern digital technology has increased pressure on young people especially to engage in unwanted sexual behaviour is an important part of the reason the community needs to have more open discussion about sex and directly confront any misapprehension.

(…)

Given the recent furore over slashing the Safe Schools Coalition – an initiative to stamp out discrimination against LGBTI students – it is hard to escape the conclusion the government is deliberately pandering to the conservative wing of Liberal party in this raid on funds. (source)

Apart from the timing being wrong, spending $900K more funding on sexual health promotion via apps, the web and social media is not consistent with the picture being painted here of a government afraid of talking to young people about sex.

Typical of The Age, it can’t see the contradiction in arguing ‘modern digital technology has increased pressure on young people especially to engage in unwanted sexual behaviour’ while dismissing interventions that engage in the same spaces to address those problems.

For advice on the value of digital technologies in promoting young people’s health, The Age could have asked one Michael Carr-Gregg, who is Managing Director of the Young and Well CRC and developed its Certificate in Young People’s Mental Health and Digital Technology.

We should not fund YEAH

It’s a matter of numbers and reach.

How many young people aged 15-30 are there in Australia?
2,464,966 (ABS estimate 30 June 2013, table 7)

How many new young people enter that cohort every year?
144,617 (ABS estimate 30 June 2013, table 7)

Young people reached by YEAH in 2015
10,000 ‘face-to-face’ (Jill Stark, The Age 23 April 2016)

These figures from their 2015 Annual Report show the cost-effectiveness of this program:

Screenshot 2016-04-25 12.55.47 Screenshot 2016-04-25 12.55.27 Screenshot 2016-04-25 12.55.00

Unless the 62 workshops had 161 participants each, it seems like the 10,000 ‘face-to-face’ contacts — the number quoted in Jill Stark’s article — includes young people reached via Facebook, Instagram, e-newsletters etc. If so, the majority of YEAH’s outreach to young people was via online social media. If not, we paid $456K for YEAH to conduct 62 workshops, at a cost of $7,358 each.

Sidebar: I am absolutely mystified by the claim in YEAH’s annual report that it spoke to ‘50,000’ and ‘82,000’ young people in 2014 to ascertain their views about its participation in the Triple J regional music festival, Groovin’ the Moo.

Screenshot 2016-04-25 16.52.39

Is this an argument for funding YEAH to reach more people? No. The problem isn’t a lack of resources, it’s that their service model is misguided to begin with. The problem is partly how the organisation was historically focussed and partly the failure of its CEO, Alischa Ross, to step down from hands-on management of the organisation when she was no longer a young person.

First, the history of YEAH. As HIV/AIDS infection rates increased in the early 2000s, a number of different ‘moral entrepreneurs’ saw their opportunity. In November 2007 the ABC reported:

MARK COLVIN: In the last few years especially, it appears the issue of AIDS has gradually dropped down the agenda, both for politicians and the community.

Infection rates in Australia are rising and there are concerns that the young generation is ignorant or complacent about the dangers of HIV.

Youth affairs reporter, Michael Turtle.

MICHARL TURTLE: This year, it’s estimated about a thousand Australians will be diagnosed with HIV for the first time. That’s an increase of about 30 per cent from the year 2000, when 763 people were found to have been infected.

After almost two decades of containment, HIV has begun to get the better of the community again. (source)

Ross framed YEAH as a pre-emptive response to a forthcoming epidemic of HIV/AIDS among young people:

MICHARL TURTLE: Alischa Ross is the CEO of the group Youth Empowerment Against HIV/AIDS.

She also sees the prevention of the virus as a priority for all ages and all sexualities. And she’s warning that it may not be long before it becomes a big problem amongst the new generation.

ALISCHA ROSS: We know that Sexually Transmitted Infections amongst the young people are spreading like wildfire. This is the same behaviour that results in spread of HIV, so it is a matter of time until we see HIV spreading amongst young sexually-active teenagers.

MICHARL TURTLE: Ms Ross is calling for a renewed focus from governments on education and awareness. She thinks HIV needs to be talked about more in schools and in the community.

ALISCHA ROSS: If we’re talking about this as a preventable disease, which it is, and we’re meaning prevention in true sense of the word, which is to stop something from happening in the first place, then I don’t think our response to prevention, when it comes to young people, should mean that we wait to see a problem emerge. (source)

By that point — 26 years into the AIDS crisis — it was pretty clear that Australia was not going to see what’s known as a generalised epidemic where more than 1% of the heterosexual population are living with HIV. Instead we have what’s known as concentrated epidemics — predominantly among gay men; due to prompt and proactive work by sex workers and people who inject drugs, HIV prevalence in those two groups in Australia is incredibly low compared to other countries.

In that interview, Ross argues we should respond to something of which there was zero evidence — a mainstream HIV epidemic ‘in the new generation’. The heterosexual focus here is subtle, but distinctive: if you are targeting gay men, it’s pretty inefficient to go through ‘schools and the community’.

In this early phase of YEAH’s development one particular phrase got a workout:

Through the development of YEAH (Youth Empowerment Against HIV/AIDS) Alischa’s focus has been educating young people from across diverse communities, advocating the message, ‘HIV/AIDS is an issues that affects everyone‘. (source)

Alischa Ross had no educational training and this is apparent from the incredibly dense ‘student fact sheets‘ and teaching materials YEAH was promoting at the time. I remember being concerned that the information provided was confused:

A retrovirus moves in the reverse direction to the natural cycle of the body’s own cells enabling this type of virus to bypass check points that would usually prevent the integration of foreign materials entering human cells.

The body relies upon these check points in the cell cycle to regulate disease control. HIV’s ability to bypass this allows it to integrate into the body’s own system and take over white cells by inserting its own genetic material into the body’s T cells and the new DNA re-programs the cell to destroy the immune system. (source)

In the late 2000s the Australian Government launched an ‘STIs are spreading fast’ campaign and YEAH obtained funding to promote STI awareness among young people. This led to a shift in its messaging to emphasise a sense of crisis around STI. In a presentation to the 2012 CSRH conference, Ross and Felix Scholtz argued:

In the past 3 years Australia has seen a 20% increase in the rate of STIs diagnosed amongst people aged 15–29 years. With more than three quarters of nationally reported STIs occurring amongst young people we must find new ways to effectively communicate and articulate in a meaningful way with young people, many of whom have limited or inaccurate knowledge of sexual health risks and how to prevent poor sexual health outcomes.

This project investigates the effectiveness of people aged 17–29 trained in HIV/STI peer-education, to deliver sexual health promotion activities at a national regional music festival to determine if there is an evidence base for scaling-up youth-led sexual health promotion.

Using peer education and social marketing activities, the project facilitated the promotion of positive sexual health messages to 85,000 young people in five regional centres. Using qualitative analysis of the perceptions and experiences of participants, it’s argued that methods involving young people are more likely to be effective in directly impacting young people’s behaviour.

The analysis contributes to understanding best practices to empower young people to take control of their sexual health. The findings support increased investment in policy and peer-based programs that put young people’s leadership at the centre of national responses to youth sexual health. (source

The abstract uses relative percentages (‘a 20% increase’) and proportions (‘three quarters’) to suggest a sense of crisis around STIs in young people.

However, diagnosing more STIs doesn’t automatically indicate an increase in transmission of STIs: it can mean more people getting tested, either seeking it out because of awareness or being proactively offered testing by doctors. It can also mean the same base rate of infection multiplied by an increased rate of sexual encounters and partner change (or concurrency). My point here is that it’s an incredibly crude figure and careful analysis and further research are required before drawing conclusions from it.

Secondly, there’s an implicit claim that STI diagnoses among young people are disproportionate. This in fact reflects patterns of sexual and romantic partnerships in Australian culture: many people see their twenties as a time for exploration and form longer-term partnerships in later life.

There are other problems here. Like the way a funded project is presented as a research initiative (‘investigates the effectiveness of’). Or the weasel words used around its absurd estimation of its claimed reach (‘facilitated the promotion of … messages to 85,000 young people’). Or the mismatch of constructivist research methods and data type (‘qualitative analysis of the perceptions and experiences of participants’) to assess a probabilistic question (‘likely to be effective in directly impacting young people’s behaviour’).

But most of all it conflates policy participation with service delivery. I agree with its call for ‘increased investment in policy and peer-based programs that put young people’s leadership at the centre of national responses to youth sexual health’. And that’s why I don’t support the #SaveYEAH campaign — because YEAH, as an organisation, is not configured in a way that reflects best practice in youth leadership and engagement.

Achieving effective representation of young people doesn’t require a model where young people deliver all the services. It requires an engagement structure and practices that reaches a diverse array of young people, listens to them on an ongoing basis (this rules out focus groups and online surveys), and then translates their feedback into influence on policy-making and service delivery by other agencies, so that young people have better experiences of more sensitive and relevant education, clinical service provision, etc.

Effective policy advocacy achieves a multiplier effect: by targeting policy and the establishment of best practices, it influences a wider array of services and actors who in turn influence the daily lives of a much, much wider audience than direct service provision can ever hope to reach.

Even if you ‘promote messages’ about sexual health to young people, if they can’t get condoms, or see a trans-friendly psychologist, or get sexual health care which includes a rectal swab, then the message isn’t helping anyone.

Of course, YEAH would argue that it does this advocacy work as well. But when its CEO Alischa Ross turns up at a policy forum instead of an actual young person and gets called out for speaking for Youth Empowerment Against HIV/AIDS (Inc) instead of empowering actual young people to participate in making policy, that doesn’t work.

Ross was born in 1980 and in a 2009 book chapter she wrote:

Screenshot 2016-04-25 17.07.50.png — (source, p207)

There is a norm among youth-led organisations of CEOs ‘stepping up and stepping back’, or in the case of Oaktree Foundation, requiring their CEO to resign at age 26. Organisations that don’t take this approach need to be transparent about their adherence to best practices in youth participation, engagement and leadership. That is a governance issue, because it profoundly affects the organisation’s credibility in funding and advocacy. YEAH needs to have a good hard think about those issues as it casts around for new funding.

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.

* * * * * *

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.

* * * * * *

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.)

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.
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.
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.
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.
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.
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.
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?
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.
The risk of other STIs. Zach 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:

Of condoms to completely prevent HIV transmission;
Of gay men to use condoms all the time as required by (1);
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.

Capturing diffusion in action

In social marketing, diffusion is the hidden premise in nearly all our campaign strategies. After all, we set population-wide objectives for campaigns only funded enough to reach a tiny fraction of society at large. So if only 1-in-10 or 1-in-100 of our target audience actually sees our message — and I’m being optimistic here — how could that influence the other 9 or 99? The implicit assumption is usually that our message will ‘diffuse’, i.e. spread onwards and outwards through word of mouth.

There’s a theory that supposedly describes how this happens: Rogers’ (1962) Diffusion of Innovations theory. He studied how farmers came to adopt new technology for automated farming, and why some picked it up really early and others waited a really long time. He graphed the adoption curve and divided it into segments: innovators, early adopters, early and late majority, laggards.

The implication for someone who wants to start a trend is that you need to identify the early adopters in a population — people who have LOTS of social connections — and convince them, and then the other segments will follow like dominoes. This was certainly the message of Malcolm Gladwell in his book The Tipping Point, and both Gladwell’s and Rogers’ theories have turned up in massive RCT studies of community-level HIV prevention interventions, like Project Accept (Khumalo-Sakutukwa et al, 2008).

The problem is both theories are wrong.

Rogers just takes the normal curve and labels the standard deviations A, B, C, etc, and then assumes because A before B therefore A causes B. Post hoc ergo propter hoc. Gladwell assumes spread is determined by characteristics of well-connected, charismatic people (like himself). But as Duncan J Watts demonstrated in real time using 16 separate bunches of real people downloading, sharing and rating digital music tracks, it’s not about particular well-connected individuals, it’s about having a large proportion of easily influenced people that matters (Watts, 2001).

To use a disease metaphor, we’re not looking for superspreaders like Typhoid Mary — it’s about what proportion of your population are vulnerable (ie. not immune) to the message you’re trying to spread. This poses all sorts of really interesting questions for campaign planners.

One is: what would information immunity look like?

And another: how would I track diffusion of my idea?

At a very superficial level, as Tyler ~~Cowen~~ Horan has shown, it’s possible to measure diffusion of links or hashtags on social networks like Twitter, using automated content analysis tools like OpenCalais and the publically available feed of all tweets for a given keyword. That will give you a quantitative and social network view of the spread of a particular marker of an idea. But it won’t give you any clear sense of how people are making sense of it. That first question — information immunity — complicates the hell out of the second one.

So I was interested to see friends on Twitter discussing changes to the Healthy Kids Check as reported in a Fairfax news article:

Preschool mental health checks by Jill Stark (SMH, 10 June 2012)
THREE-YEAR-OLDS will be screened for early signs of mental illness in a new federal government program that will consider behaviour such as sleeping with the light on, temper tantrums or extreme shyness as signs of possible psychological problems.

In particular, one friend had a problem with the idea that GPs might be using a 3yo wanting to sleep with the light on to diagnose a mental health disorder. A few different people engaged on three things I discuss here, and there was fruitful discussion about these aspects of the proposal, but my friend kept coming back to the 3yo wanting the light on. This particular example clearly resonated with this friend’s strong concern about the pathologisation of natural processes in parenting and child development.

For my part, I noted that it’s about identifying known precursors or risk factors for future mental health conditions, rather than the GP diagnosing a current disorder. This enables a ‘watchful waiting’ approach or possibly a referral to a child mental health expert for further investigation.

My own receptiveness (lowered information immunity) to the idea was increased by having recently read, shared and discussed on Facebook an article about ‘high reactive babies‘ — a temperament with a low threshold for alarm at small changes in environment, routine, noises, smells, that predicts anxiety in adulthood. This resonated with me personally, as a colicky baby who grew into an anxious adult with a touchy tummy and insomnia.

This research isn’t mentioned in the article but it’s clearly a really important piece of background knowledge needed to interpret the new information; without it, it’s hard to understand why a 3yo wanting the lights on is relevant to anxiety the disorder, rather than just anxiety as a normal and natural emotion known to be experienced by 3yo children in the dark. From a diagnostic point of view, it’s not the status of the light, on or off, that matters — it’s about the intensity of the anxiety and the strategies the child uses to manage the situation and their feelings.

Another key piece of background knowledge would be knowing that diagnoses are made based on the overall picture — the constellation of elements — whereas a screening tool developed with specialist referral as the intended endpoint will tend to pick out one or two key factors that are present in most cases of the disorder.

Both aspects are presented in the article, but they are laid out sequentially in quotes from different experts. This is journalistically unexceptionable: one is always going to have to precede the other, and it makes more sense to present concern before response, problem before solution. The problem lies in how it presents all three quotes as equivalent in authority:

Prof Allen Frances, chair of the DSM-IV task force, author of a book titled Am I Okay? (Expressing concern about overdiagnosis of ADD and autism resulting from ambiguous definitions in DSM-IV)

Anna Sexton from East Brunswick has children aged 3, 5 and 6 who all sleep with the hallway light on (Concerned this behaviour will be viewed as abnormal)

However, Chris Tanti, chief executive of headspace, the youth mental health foundation (Says early intervention did not automatically lead to children being labelled; Quotes figure that only 19% of clients showing signs of mental illness end up with a diagnosis)

I guess you could argue that Chris Tanti gets the last word, but unlike in oral argument (think of the closing statement in a trial), in text there’s no guarantee the reader even finishes the article.

And thinking in terms of information immunity, let’s compare which ‘accounts’ (ways of telling the story) will seem most familiar (a key measure of susceptibility to persuasion) to an audience of parents: they’ve read lots and lots of articles about ADD and autism and overdiagnosis, and Prof Frances appears to be arguing against his own interests as a diagnostician(+10 credibility points!); Anna Sexton has read the same articles and shares the concern of the credible Professor, so she’s a caring and informed parent; whereas Chris Tanti is using numbers, talking about a scenario most parents don’t want to imagine ever applying to their kids, and his argument seems to suit his professional interests. In terms of who the parent-reader sympathises with, it’s two against one.

I’m not taking a swipe at Jill Stark. This is a conscientious, intelligent, balanced and cogently presented article about a really important policy proposal. Setting up that closing ‘conversation’ between the quotes about overdiagnosis practically guarantees it will be discussed by parents. It does better at provoking diffusion than most campaigns in my own field, which often foreclose on discussion by finding and presenting a ‘single [simple] minded proposition’ that nobody can argue with (and so nobody does).

But I’m worried by how that discussion played out in my Twitter stream. I’d like for Prof Frank Oberklaid, who mentioned sleeping with the lights on, to have some way of knowing that example backfired. I’d like for the people developing the policy to know there’s concern about a key question — who does the diagnosis, if any, the GP or a specialist? These are qualitative questions whose answers could feed back into better communication approaches and better health policy, if only there was some way to capture them…

A modest proposal

Imagine you’re about to send out a press release about a new campaign or policy initiative. You know it’s likely to provoke discussion, perhaps involving issues that are tricky to deal with in a standard health news article format. You’d like to see the discussion without engaging in surveillance of semi-private spaces like @-response discussion threads on Twitter. And you’d like the ability to answer key questions arising in the discussion — or at least to signal that you’ve heard and acknowledged them being raised.

This is not a technically difficult problem to solve. Let’s get a consortium of health communication practitioners and researchers and journalists together; Croakey would be perfect for this. The consortium builds a website where people launching campaigns or policy initiatives can register and create a landing page with a short URL, which they offer to health journalists to include in their articles. Readers can follow the URL to a page that lets them ask a question and receive a notification when an answer has been posted. They can also see other questions that have been asked, and vote on them if they had the same concern. Answers should be written by experts involved in the policy — they need to be substantive, as people can easily see through tightly-controlled PR responses.

I’d focus on Q&A and voting, as I’ve come to doubt the discursive utility of comment threads in this hyperpartisan era. And I’d want to let health journalists in on access to the usage metrics it would generate — after all, they need feedback too on what issues matter and how different article structures influence understanding and discussion of their work. In this age of the “Australian Vaccination (sic) Network” and climate change “debate”, the need for post-publication opportunities to answer questions and correct misconceptions is screamingly clear.

The mini horror movie before bedtime

This week marks the 25th anniversary of the Grim Reaper ad first going to air, and I have a guest post at Croakey reflecting on its legacy. For people working in the HIV sector, hating on the campaign (and its creator, S-aye-aye-mon Reynolds) is almost mandatory. Like a lot of people, though, if I’m honest, I feel a certain nostalgic fondness for the ad itself, so I wanted to keep it reasonably even-handed while still acknowledging its downsides — as my colleague puts it, hiding the beetroot in the chocolate cake.*

Read the full post here

* Not a sexual metaphor (see recipe).

Prevention campaigns missing the mark with young gay men

Last week the NCHSR e-Newsletter landed in my inbox with a lead story on the sexual health needs of young gay men in Australia.

Results revealed that while younger gay men reported similar rates of unprotected anal intercourse as older gay men, their HIV/STI knowledge was lower and almost three out of ten had never been tested for HIV/STIs. Poor knowledge and low testing rates among younger gay men seem to be related to lack of exposure to HIV campaigns reported by almost a quarter. (emphasis in original)

This issue may sound familiar to long-time readers. I have argued that Victorian prevention strategy between 1999-2009 has focused on men aged 30-49 and neglected young gay men, whose life interests and experiences differ in important ways.

Continue reading “Prevention campaigns missing the mark with young gay men”

Building the evidence

On Friday, I presented at an interstate talkfest on HIV in culturally diverse communities.

The pre-reading for the meeting was heavy with public health strategies focused very tightly on disease reduction, and a mammoth epi report, analysing results from surveillance of HIV notifications, behavioural surveys, and mathematical modelling.

Despite having a massive committee and a very prescriptive action plan, it seemed that, aside from one very capable and energetic agency, actual action had almost come to a standstill. The workshop was intended to revitalise it, but its title and main objective was “building the evidence”.

Does lack of evidence cause inaction?

I had only eight minutes to describe findings from our consultation report, and answer three questions posed by the organisers — not a lot of time, and not enough for reflection on the knowledge practices involved. But I managed to squeeze in a provocative suggestion, and I was delighted when it was picked up in question time.

I suggested that health promotion planning is not especially sensitive to variations in the epidemiology.

In other words, whether epi reports there are 10 or 20 new infections in a particular cultural group — double the amount, 100% difference in statistical terms — I’m still going to propose broadly the same plan of action in response.

We’ll hire a project worker, identify partners, convene a reference group, review the literature, undertake community consultation, do some rapid assessment of the causes and most useful activities/messages/channels to use, do the work and then report back on how it went.

Knowing the number of new infections is much less important than knowing the size of the group, and developing a close understanding of what resources exist in that group in our state for undertaking health promotion work.

There’s no use planning a social marketing campaign if the target group is really spread out geographically and have no common media channels (like newspapers and radio programs) and habits (like reading and listening to them) and related skills (like print, media and health literacies for reading and learning from social marketing campaigns).

There’s no use proposing a key opinion leaders approach if the community is so new or disorganised that it has no institutions and structures for leadership and communication.

That kind of knowledge makes a HUGE difference in health promotion planning; stats on numbers of new infections, not so much.

I pointed this out in my presentation, and sure enough, in question time, there came the obvious objection, from an epidemiologist who does a lot of interesting work in mathematical modelling.

We have to ‘live in the real world’, he said, ‘we can’t ignore the epidemiology’.

Not really what I called for.

Where those stats make a big difference is in public health. Government funding is the ultimate zero sum game, and epi helps decision-makers objectively assign priority to competing worthy causes. It is a hugely important tool in rational government. Around the world, where governments have ignored the epi and funded politically convenient work, HIV epidemics have exploded.

And while I’ve said that epi isn’t always terribly relevant for health promotion planning, I still read every paper and every report, cover to cover, and squeeze every last drop of meaning and use out of it. The key thing is where I use it — in my funding submissions and advocacy to government.

I want to draw a strong distinction between (1) health promotion and (2) public health. They are not the same thing, and shouldn’t be conflated. They have different vocabularies, pointing to different underlying concepts and philosophies, and they focus on different levels.

Obviously they are connected – since public health people fund health promotion workers. In spaces where they overlap, however, like the talkfest I was at, you can pretty quickly see communication problems arising between the two different languages.

It’s a problem of articulation – in two senses: how we find the terms to express ourselves, and how our discourses (the languages of our disciplines) can join together and mesh at their points of connection to transmit power.

Power in this case means funding for work, but it can also mean domination, where one can override the other, and alternatively it can mean trust, where two groups who use different language and knowledge practices can still work together effectively.

Epi and behavioural surveillance are vital for the public health functions of commissioning, monitoring and evaluating health promotion activities and outcomes. As I’ve argued here, health promotion people should know about them, but the inputs into our planning need to be broader.

Culturally diverse communities are mostly migrants, whether temporary (international students, casual workers and visitors) or permanent (skilled migration, family reunion, and humanitarian entrants), and migration patterns change all the time.

Health promotion in this area requires a process of continuous rapid assessment, and instead of dismissing this because it doesn’t look like formal epidemiology, we need to borrow principles for assessing and improving its rigour and validity from qualitative methodologies.

We also need better recognition of the difference in languages, concepts and inputs used by public health and health promotion, and the need for careful and respectful engagement at points where they interface with each other.

Without it, decision-makers and researchers will be left to hold talkfest events, to scratch their heads and wonder why their ‘evidence’ never makes it into practice.