Making trouble within the discursive ecology of HIV

Last night ACON held its second ‘State of Play’ forum at the Colombian, which offers the gay community in Sydney an update every six months on the changing epidemiology and emerging issues around HIV and STIs.

In my last post I highlighted an emerging inequity around HIV prevention, where new infections have dropped 43% in Australian-born MSM but risen 13% in overseas-born MSM. There’s evidence this is due to inequities in PrEP awareness, access and uptake.

chuttersnap on unsplash

Something I missed in my last post is that overseas-born MSM now exceed Australian-born MSM in raw numbers of diagnoses.

I nearly fell off my chair when I noticed. The 2016 Census reports that 34.5% of people in NSW are born overseas. This means the crude rate of new infections in overseas-born MSM is more than double that of Australian-born MSM. (See note on crude rates).

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At the forum, ACON’s Brent Mackie pointed to the graph (above) and said it clearly shows ‘diverging epidemics’. I understood this as meaning different experiences of the same epidemic. In epidemiological terms, however, talking about two diverging epidemics suggests the two cohorts don’t interact much. The implications are quite different.

There are many assumptions floating around about who these overseas-born MSM are, and how they experience and respond to HIV risk. These assumptions may influence how programs understand the community (or communities plural) they need to engage with. In this post I want to unpack some of those assumptions about overseas-born MSM.

But first, I want to take a little detour to answer a question I was asked about my position within the Australian HIV response. If you prefer, you can skip past it.

Post-mortem of a career in HIV

In my time working in the HIV sector, I noticed a tendency for the sector to settle on a ‘line’ — a single message — pretty soon after any new complex problem was raised by epidemiology or social research.

From that point onward, the sector would debate whether that line was true or false — debates that often generated more heat than light. So, for example, in the mid-2000s when HIV diagnoses began to rise for the first time after the 1990s, the ‘line’ was that the rises reflected increased testing rates rather than increased infections.

Some debates became so heated that it became nearly impossible to talk about the topic at all — for example, an early controversy about the language of ‘community viral load’ made it sensitive to discuss the impact of viral load on infection risk. And that dynamic could also be strategically invoked: at the first sign of a key player ‘arcing up’, e.g. by taking offence or announcing the issue was problematic, other players would back away quietly and the issue would get shelved.

I triggered one of those conflagrations in my first year of working in HIV, when I fed back to my team that I’d seen a chatroom discussion in which HIV-negative men were protesting that the tag-line of the first Staying Negative campaign (‘So-and-so has been HIV-negative for 33 years; he plans to stay that way.’) was reinforcing HIV stigma. Then, even though I’d pushed to be the project officer for the campaign, I was told I’d ‘had an agenda against the campaign from the start.’ I’d offered a constructive solution — using quotes from the personal narratives featured on the campaign website instead of the tagline — and I was told this was out of the question. After I left, subsequent iterations of the campaign did exactly what I suggested.

Later, when I did some media advocacy about the lack of campaigns targeting young gay men, the AIDS Council wrote letters to the editor of gay newspapers denouncing me. Their contract manager at the health department called my new workplace, which took the call as implying that my advocacy put its own funding at risk. My stance was later vindicated by research. But in every job I’ve taken in the HIV sector since then, my new employer has received a phone-call along the lines of ‘we need to talk about Daniel.’ The consequences of speaking up in those mandatory silences can be career ending, and just about everyone knows it.

At the forum last night, someone asked me why I’m so forthright when I think something isn’t working in the Australian HIV response. If you’ve ever met me in person, you’ll know this persona doesn’t match my own personality; I’m pretty reserved, with a tendency to overthink things, and I’m not at all comfortable with conflict.

The answer is two-fold: (1) I think someone’s gotta raise this stuff; (2) having been through the conflagration, my reputation as a firebrand is permanent, but I can still do useful work within the scope of it.

I talk a lot with community elders about the early days of the HIV response. One big change is that we rarely use protest or media actions to put pressure on government. We conduct our advocacy behind closed doors, in the language of policy analysis, and do nothing that could put our funding at risk.

Now, I have no problem with that approach — I have earned millions of dollars in project funding by working along those lines.

But when there’s a big change in need of a transformational response, that approach is rarely going to be effective. In the early days of the HIV response, a key dynamic that emerged in different countries was the formation of two different groups: one steady and respectable and focused on service delivery, and another rowdy and activist and willing to make noise and break things.

Spoiler alert: the first group always wins. They get funded, they stick around. But this can be to their detriment: they were effective early on because they offered policy and program solutions to the media and political problems that were created by their activist counterparts.

The next time you hear some armchair social change expert criticising people who never offer solutions, remember: there are no solutions without problems. An issue or crisis does not get a policy response unless it either is, or threatens to create, a political problem.

If you are curious about the work I do finding solutions to tricky and neglected problems, check out my portfolio on my consultancy site.

Responding to complex problems

The dynamic I mentioned earlier — where the HIV sector finds and then settles on a ‘line’ about an emerging issue or epidemiological trend — is known in complexity science as ‘path dependency’. In other words, decisions made early on can foreclose options for understanding and responding in future.

The line becomes a groove becomes a rut.

I want to describe my own understanding of the complexity of HIV prevention among overseas-born and culturally diverse gay and bisexual men. This discussion builds on the Double Trouble and Responding to Diversity reports I published as a senior project worker at the Multicultural Health and Support Service based at the Centre for Culture, Ethnicity and Health in Melbourne (Reeders 2010, 2012).

I’m not claiming I have all the answers; rather, I want to suggest some necessary questions. Not all of them can be answered with the data we have available, so we need to keep these questions in mind and listen for feedback as we develop policy and program responses.

The surveillance data contains a field for place of birth, and the public report aggregates (lumps together) all the people who were born overseas. That aggregation conceals a lot of diversity.

Visa status or residency or citizenship — It includes skilled migrants, humanitarian entrants and international students. It also includes Australian citizens, both people who grew up here and only speak English, as well as adult migrants who have become permanent residents and then citizens.

Access to healthcare — It includes people with access to Medicare and people with private health insurance for international students and skilled migrants (which is ‘Medicare equivalent’ in name only). It includes refugees who have access to refugee health and settlement services, and asylum seekers who have very little access to any kind of care and support.

Place and time of exposure — At the ACON forum, someone asked about place of infection. People diagnosed with HIV are asked to nominate when and where they think infection might have occurred. Apparently, it’s about 50-50 in Australia versus overseas. There’s a tendency in debates over immigration to assume that migrants bring diseases to Australia, but migrants in some streams and from some countries of origin are tested for HIV prior to being granted a visa. We also need to be thinking about the travel people born overseas do after arrival in Australia. See the next point…

Different sexual cultures — In the Double Trouble and Responding to Diversity reports I noted another assumption that international students experience Australia as a paradise of sexual freedom — based on a low-key racist assumption that Asian cultures are conservative and sexually repressed.

This ignores practices of intensive sex partying (Hurley & Prestage 2009) that are in some senses constitutive of a mobile gay culture in Asia — practices which include home-parties, travel for circuit parties and big events like Songkran, and ready access to stimulant and erectile enhancing drugs.

Experiences of discrimination — The Double Trouble report noted a tendency for health professionals and support workers to assume that culturally diverse communities are homophobic and that gay community is welcoming, but the culturally diverse MSM who took part in forums and interviews described the powerful impact of experiences of sexual racism in the gay community. (See this great piece by Omar Sakr.)

Sexual network structure — There are competing assumptions that international students want to partner with locals or, alternatively, that international students ‘keep to themselves’. In my own experience of using different hookup apps, there’s definitely some indication of a partitioning effect — I recognise many of the same guys on apps like Grindr, Jack’d and Scruff, and recognise few guys using Chinese-made apps like Blued.

English language and health literacy — Many migrants come from countries where English is a national language, and have to pass English language proficiency tests. English proficiency is not the only barrier to acquiring prevention knowledge — it’s the unfamiliarity of the background knowledge, which is not conveyed by campaigns and fact sheets, but through immersion in a local culture of HIV awareness among gay friends and gay media.

Prevention reach and recognition — This culture is most intensely reproduced in the inner city gay enclave. As an ACON volunteer pointed out at the forum, he was born in Australia and speaks English, but he’d grown up in Western Sydney and until two years ago he didn’t know ACON existed. Similarly, he noted the density of sexual health services available in the gay enclave, compared to the 1-2 services available for 2m people out West.

Research recruitment — This problem affects research recruitment as well: because the Gay Asian Men’s Survey predominantly recruits participants through services and social media communities like ACON, it samples respondents who are socially and service-connected. Social and service connection is a protective factor, so the findings are likely to underestimate vulnerability.

Access to affordable PrEP — Lastly, I asked what ACON is doing to advocate for PrEP access among the roughly 4,500 gay male international students in NSW who are not eligible for Medicare once the EPIC-NSW study closes its books. I noted there’s a stereotype of international students being wealthy, but in fact over two-thirds are studying vocational education and training, and many have borrowed money to do so — so importing medication may not be affordable. Another challenge is that the population of international students changes by 35% every year, meaning the impact of one-off interventions will quickly ‘wash out.’

Takehome message

We don’t actually know if the data reflects diverging epidemics, or different experiences of the same epidemic.

Among the different dimensions of migration status and experience I’ve mentioned here, we don’t know which ones are most important to target with campaigns and initiatives.

We need to take David Wilson’s advice to ‘know your last 1,000 infections’ — in particular, their country of birth, migration status and age group, their Medicare access, and where/how they were diagnosed. This might never be disclosed in public, but addressing HIV infections among overseas-born MSM will require a coordinated response from the entire HIV sector — so it’s essential we start having that conversation now.

* Note: The adjusted or ‘true’ rate will be slightly or even substantially different. We don’t know whether the proportion of gay and bisexual people is the same in each population, and we also know the age structure is pretty different. If there were a higher percentage of MSM among overseas-born people in NSW, the infection rate would be lower.