‘Your normality stinks of blood’: writing the aftermath of a killing

About five weeks ago, as I was walking home through the drizzle after a date, my friend Zoe Mavroudi, producer of the must-watch documentary Ruins, got in touch to ask if I could help in translating a piece from French. The piece, by Dimitris Alexakis, concerned the killing of the queer and HIV activist Zak Kostopoulos in Athens a few weeks prior. Even with my high-school French I could tell it was spare and powerful writing, and I offered to ask around. I posted a request on Facebook and went to bed. 

“The sole fact that Zak was probably seeking safety in the place where he found death is enough to cry for the rest of one’s life,” writes V.

Two days after his death, stenciling appears on walls throughout the city: “Your normality stinks of blood.”

‘Like a prayer’: In memory of Zak Kostopoulos

Next morning there were two offers to help – one from Darren Russell, a Cairns sexual health doctor who is a fluent French speaker, and another from Rose Peach, currently studying literary translation in Paris. Darren offered to do a first draft the same day and Rose offered to follow up, and so I created a FB chat with Dimitris and Zoe, and we were away. 

Zak Kostopoulos

The translation came together quickly, thanks to Darren and Rose. Finding a home for the piece took longer. It was finally published, today, in full. I’d love for you to read it. Trigger warnings for homophobic violence. 

There are a couple of words and images in the French and that first draft that will stay with me forever. One is the hard-to-translate s’acharner. It translates as ‘to hound’ in English, but if you can hear the Latin echoing through the French, the stem is a word meaning meat, or flesh – as in charnel house, i.e. a chamber for human remains. In my head I translate s’acharner as ‘to reduce to meat’ — referencing the single-minded obsession of a dog pack on the hunt; a hunger that obliterates humanity. 

The second describes the owner of a jeweller’s where Zak sought refuge, going in for one last kick at his head, like a footballer taking a penalty shot.

At one point we were pitching the piece to a well-known Left publication, and they wanted to cut it down to a couple of thousand words of straight (ahem) reportage. That misses the point of the piece. It’s not just a bad thing happened. It’s about how you know what happened and how you tell that. 

We considered splitting the piece into two – one with the first half, describing the media circus and the farcical investigation, the other with the second half, describing the communities organising in response and struggling to make sense of the attack and its aftermath.

I wrote the words below as a kind of foreword to the second piece – an attempt to translate queer politics into a form that straight Left scholars might be able to recognise as politics. I am glad it wasn’t needed, because the piece was published in full in e-Flux Conversations. 

Exiled in time: mourning and protest

Cathy Caruth describes trauma as ‘unclaimed memory’ – the experience that refuses to be encoded in memory as a narrative with a beginning, a middle and an end. Instead, traumatic experience demands to be be relived in the present, in the form of flashbacks, and it registers in the body and in dislocations of time and place.

In the aftermath of Zak’s killing, the imperative is to resist narrative closure. There has not yet been a credible, independent investigation. Almost as soon as it happened, the usual suspects – the police, the media, the juridical establishment – went to work to wrap the event in a containing narrative. Nothing to see here: just a robbery. For Zak’s loved ones, the most immediate task was to unpick that shroud of counter-narrative, to let the body be seen, to let the event register in the community body assembled in protest and mourning.

Trauma, in this sense and on this occasion, is analogous to Raymond Williams’ description of structures of feeling as ‘social experience which is still in process, often indeed not yet recognised as social but taken to be private, idiosyncratic, and even isolating’ but which has emergent, connecting and dominant characteristics that, on analysis, yield important insights into social transformation.

The piece that follows is not easy reading. The writing marks the temporal dislocation characteristic of trauma: recollection in the continuous present tense, current events in the past tense. It is a fragmentary and multivocal account, reflecting the diverse perspectives that cohere in the community experience of grief and loss. For their safety, speakers are identified only by first initials. Even pseudonyms could mark out innocents for targeted harassment. This, as much as the text, speaks to the intensification of an incipient fascism in Europe.

Alexakis carefully describes the negotiation of tensions arising between queer and anarchist people and groups in organising action in response to the killing. Some are predictable: disagreement over the use of violence; conflicts over the language of protest and critique. He highlights, as well, the way queer politics are so often unrecognised as politics within the broader Left and autonomous movement.

Writing in ROAR about the Gezi Uprising in 2014, Cagla Aykac notes ‘Minorities were present from the start — they already knew how to think, write and talk about all this.’ Others, she argues, ‘had to learn a new language, and many still struggle to declassify their tongue,’  and integral to this language is ‘splashing color, joy and pleasure.’

Using this language, Alexakis vividly evokes a queer politics that is geared not only to social transformation but also to preserving space for tenderness and celebratory gesture amid protest and mourning.

Adventures in policy advocacy: challenging the proposed ‘poppers’ ban

In progressive politics there’s an age-old split between reformists and revolutionaries, and this shows up in the HIV response as well – LGBTIQ health advocates and policy-makers don’t always get along with queer activists and researchers. But as the HIV response demonstrates, you always need both. At the onset of the AIDS crisis, there was a sizeable homosexual contingent in the public service, and there were unionists, gay liberationists and feminists with skills in organising people to protest. And while they fought with each other, they were effective in combination – media pressure stirred up by protestors and radicals created political problems that reformists and policy-makers could offer to solve. You’d better believe there was quiet informal coordination over beers, especially when organisers like Phil Carswell became public servants, working with political allies like Neal Blewett and policy entrepreneurs like Bill Bowtell.

The great scholar of how policy changes happen, John Kingdon, argued that major change happens when three main systems that operate in very different ways coincidentally align – the problem stream (researchers and advocates), the policy stream (policy-makers who compare solutions) and the politics stream (politicians and the media). There are no solutions without first having a clear sense of a problem and political pressure to fix it. I’ve worked in a few different sectors – not just HIV but viral hepatitis, sexual and reproductive health, migrant and refugee health, and cancer screening. And nearly all the non-HIV sectors try to work quietly and politely within the process. (And often complain about why HIV gets all the attention.) But increasingly, that’s how HIV funded organisations work as well. It’s a recipe for declining relevance.

When the TGA announced a proposal to reschedule alkyl nitrites – the volatile ingredient in ‘poppers’ – there was outcry among gay men and queer people. There was community and mainstream media coverage. Steve Spencer got himself pictured shirtless in the newspaper showing off his tattoo of an amyl bottle, and quickly started a Change.org petition with help from Nic Holas, creating a focal point for community anger. Prof Kane Race crowdsourced a quick and dirty cultural history of amyl using his Facebook page and the Unharm Queer Community Forum, before developing a nuanced account of its historical and contemporary cultural significance. It even became an issue in Reason Party candidate Jarryd Bartle’s campaign for the Victorian seat of Albert Park, currently held by Minister for Mental Health and Equality Martin Foley.

At the same time I was working on a joint submission with public health researcher Julien Tran, sexual health physician Dr Vincent Cornelisse, Prof Kane Race and LGBTQIA+ health and human rights advocate Paul Kidd. You can read the submission here. Our goal was to write in language the TGA decision-makers might be able to hear – technical, evidence-based, paying attention to the legislative constraints on the decision-making process and considerations. This is the most basic principle of health promotion: meet your audience where they’re at. But at the same time, we wanted to shift the issue off the fairly narrow ‘track’ it was on, into a forum where it might be possible to talk about the benefits and purposes of ‘poppers’ use.

By conducting a review of the medical literature, we were able to show that cases of maculopathy and vision loss only emerged after an EU decision to ban the most common ingredient in ‘poppers’ (on the flimsiest of evidence). It made for a pretty striking graph:

adverse events (1979-2017)3.png

A couple of weeks ago, Vincent called to say the TGA had asked him to come and present to a joint session of the two committees that advise the Department of Health on scheduling decisions – specifically to talk about the clinical experience and community perspective. As a paid-up member of the Australian ‘partnership’ approach to HIV, he encouraged the TGA to invite me along to speak from the community perspective. So today, at the frankly homophobic hour of 9AM, we’re presenting for ten minutes – arguing for a regulatory approach that acknowledges cultures of care and harm reduction among queer people and partygoers, along with a more limited ban on the one chemical (isopropyl nitrite) that causes vision loss, and accurate instructions on product packaging – no more ‘do not inhale’!

Click to view our presentation:

Screenshot 2018-11-08 11.26.29

Also, here’s a media release we’ve put out, in which we acknowledge the work of queer advocates like Steve and Nic in drawing media and public attention to the proposal to ban poppers. (A side note from my perspective as a PhD researcher studying engagement: it’s interesting how quiet the funded HIV and LGBT health organisations were about the ban.) Let’s hope the TGA advisory committees and decision-maker are open to considering alternatives to prohibition that address all the risks without criminalising up to 90,000 gay men and countless other queer people and partygoers. And if not – our community knows how to fight.

Not your political football: queer kids and ‘religious freedom’

This is about queer* kids in religious schools.

I went to law school wanting to change the world, and I remember the exact moment when I realised I’d need to find some other way. It was a subject on Victorian human rights and anti-discrimination law (ADL for short.) It became clear that the arena in which most discrimination is practiced – everyday life, between private individuals – just isn’t covered by anti-discrimination protections, as those protections are configured in liberal democracies like our own.

The configuration of ADL regimes enshrines a distinction that is fundamental to liberalism: a distinction between public and private life. So, for example, you can believe whatever you like, because belief is defined as private. In theory, according to the harm principle advanced by liberal thinkers like JS Mill, the moment you act on your beliefs in ways that harm another person, your conduct is legitimately the target of regulation – in the name of protecting public order and the very same rights and freedoms that are held by others.

ADL prohibits discrimination in public life. In practice, this means it marks out certain aspects of everyday life as public. You can see the full list in Part 4 of the Equal Opportunity Act 2010 (Vic). It includes employment, corporations, industrial organisations and qualifying bodies, educational institutions, provision of goods and services, accommodation, access to public premises, clubs and societies, local councils and sporting activities.

All other domains of everyday life are defined, by implication, as private.

I’ve worked on numerous projects over my working life that tackled stigma and discrimination in one form or another. Stigma towards people with HIV, or sexual racism, which is race-based stigma in sexual contexts. Discrimination towards international students. Many of those projects said something like this: discrimination is illegal, contact the Victorian Equal Opportunity and Human Rights Commission for advice and assistance. But in the vast majority of cases, that was not truthful or helpful advice.

If a person, let’s call them Peter, experiences the most vile HIV stigma from a dating partner, Norman, that’s a private relationship; ADL does not apply. If Norman goes around telling his friends Peter’s HIV status, there’s no legal remedy against that. It’s the truth, so it’s not defamation. There’s no legal right to interpersonal privacy. Peter might be able to get an apprehended violence order, but the damage will be done. The harm in this case is extreme, and it’s a clear-cut case of discrimination, but ADL does not apply because it occurs within a private relationship.

Likewise, if I offer an apartment for lease on the public market and refuse to lease it to tenants of a particular ethnicity, ADL provides some recourse to rejected tenants (if they can prove it was racially motivated). But if I’m leasing a room in my apartment, to live with me, that’s a private relationship and I can discriminate all I want without fear of legal consequence.

There’s another less recognised consequence of the ADL regime: it makes anti-discrimination protections themselves the dividing line between public and private life. That’s why anti-discrimination law is currently a political battleground. Religious conservatives are borrowing tactics from the United States in their fight to remake our country as a Christian nation.

This time last year, Australia had a plebiscite on same-sex marriage. Religious conservatives were fighting to preserve a public statement of discrimination against queer people in legislation, the law of the land. They lost, and a commission on religious freedom was established. A leak this week revealed that the report recommends legislation to allow religious schools to fire queer teachers and expel queer kids.

Now, as David Marr wrote in The High Price of Heaven way back in 1999, it was already legal to fire queer teachers and expel queer kids. Religious institutions were exempted  from having to comply with anti-discrimination protections from the very beginning. (The only exceptions are Queensland and Tasmania; WA has announced it plans to join them.) This included religious schools, hospitals, homelessness and family violence refuges.  

As soon as the recommendation leaked, there was a counter-leak claiming that really, the recommendation aims to constrain the right of religious schools to expel queer kids, by requiring them to disclose upfront to prospective students and parents that their policy is to expel any student found to be queer.

There are a few things I want to note about that.

The proposal represents an attempt to get permission to discriminate against queer people and relationships into public law. That violates the harm principle: the government does not regulate conduct that does not cause harm to another person. Queer people and relationships don’t cause anyone harm. The peaceful existence of people and conduct of whom or which you disapprove is not harm.

Now, if you want to create a club for straight people to get together and talk about how terrible queer people are, I’m fine with that. I’m not harmed by that exclusion: your clothes are ugly, your haircuts are bad, your cakes and biscuits are made with margarine and your music is terrible.

ADL already provides so-called negative rights to such groups and institutions, in the form of exemptions from ADL. But the ‘religious freedom’ report demands official recognition of a positive right to discriminate, granted by government. This wouldn’t change the rights of religious institutions, but it would change the character of the law.

Let’s come back to the harm principle. There’s a particular problem with this proposal: it involves kids.

Some kids know they are same-sex attracted or sex and gender diverse from a young age. I certainly didn’t; I didn’t work it out until I was 13 yo. That’s not uncommon, and it highlights a particular problem with the proposal to permit the expulsion of queer kids, so long as their parents have been warned upon their enrolment that this is a possibility. The problem is that a child may only come into the realisation they are same-sex attracted at a point in their personal development some time after enrolment.

The proposed recommendation contemplates severing the child from their friendship network, from supportive relationships with teachers, from their own religious beliefs and community. It is beyond question that such an experience will do permanent psychological damage to that child. Similar damage will be done if a same-sex attracted child sees a teacher fired for the teacher’s own attraction or relationships.

Religious people have the right to their own beliefs, and to teach those beliefs. They have the right, granted under the harm principle, to constrain their own lives in the name of those beliefs. They have the right to teach young people those beliefs, and to invite those young people to constrain their own lives in similar ways.

But they don’t have the right to act in ways that will cause lifelong psychological damage to children and young people.

Apparently, the Ruddock report recommends that, ‘In relation to students, the school must have regard to the best interests of the child as the primary consideration in its conduct.’ But religious schools understand same sex attraction as a contagious and voluntary form of transgenderism, from which it is in the best interests of the child to cease and desist.

Rather, the harm principle should guide a legislative response by the state itself. From the earliest days of liberal democracy, it was recognised that the state has a special responsibility for the welfare of children, and the obligation to intervene if those children are being neglected or harmed. That’s reflected in the parens patriae jurisdiction, where any person can apply to a court for an order in the best interests of a child. It’s the basis of child protection law, truancy officers, indeed, the emergence of the profession of social work.

I was recently diagnosed with PTSD, caused by anti-gay bullying in a Catholic secondary college, twenty years ago. Let me be clear: it is child abuse. Research evidence describes its longterm effects for mental health and a range of outcomes including metabolic disorder and cardiovascular risk. It violates the harm principle, and it has no place in a liberal democracy, even one as imperfect as our own.

* Note about terminology: I personally identify as queer and have done for nearly two decades, but this piece initially referred to ‘gay kids’. That’s because I was writing from my own experience of having been a gay kid – although that doesn’t become explicit until the closing paragraph. It was pointed out that the ‘gay’ identifier doesn’t include trans people or lesbian and bisexual women and girls. Neither does my own lived experience of this issue, but as a result of the PTSD I write about, I’m not in any position to have an argument over terminology, so I’ve changed it to queer. 

Busy

Last weekend feels like a month ago.

I’m preparing to move to Montréal for six months for PhD fieldwork, and also doing weekly therapy for PTSD, and going through a cognitive evaluation to request reasonable adjustments to my PhD program, and doing fieldwork on a case study here in Sydney, and working on an advocacy contract for my business, and developing an animated short film about event-based PrEP, and I was, until its submission on Thursday, researching and writing a joint submission against the proposed amyl ban, and pitching a methodology for a category one grant, and then on Sunday night I began helping to find translators and a publication for a powerful piece about the killing of queer activist and performer Zak Kostopoulos, about three weeks ago, in Athens.

Believe it or not, anticipating the obvious response, I have been saying ‘no’ to things. I’ve asked for more time, turned down work, let some things slide, acknowledging I can’t do everything. I haven’t been trying to treat my body like a machine for working. I went on a few dates with a cute guy; I don’t think it’s going to work out, but it’s nice having someone to message before sleep and on waking. I’ve also worked out that doing therapy, while constructive, is like riding around on a bike with a slow puncture; it’s a day a week, sometimes two, in which I’m completely wiped out, physically and mentally. I went to a spin class after my last session, and it definitely worked to clear my brain and restore my energy, and I’ve been hobbling around all week since. I realise now that to ‘murder your quads’ is not a euphemism. But I loved it.

Please forgive me if you’re waiting on a draft, or a review, or a reply to an e-mail – normal service will resume shortly – your patience is appreciated.

Last opportunity to challenge poppers ban!

kisspng-poppers-amyl-nitrite-isobutyl-nitrite-poppers-5b52356456ec12.661910411532114276356

The TGA has published an interim decision on moving nitrite inhalants, also known as amyl or poppers, onto Schedule 9 of the Poisons Standard — a move which would make the sale, possession, use or administration of poppers a criminal offence under controlled substances legislation in Australian states and territories.

These laws are different in each state and territory, making the full exposure to criminal liability a bit difficult to predict. Under the relevant law in the Australian Capital Territory, for example, a person who purchased a poppers product from overseas, held it in their possession, used it themselves and offered it to a sexual partner could be guilty of four separate offences. (See Vic | NSW | ACT laws.)

The interim decision on nitrite inhalants can be viewed here.

Submissions open!

You can make submissions on the interim decision by e-mail until 11 October 2018.

See the instructions on how to respond and my own draft response below

There’s work underway on a public document with key messages and evidence that you can draw on to write your own submissions.

Update 18 Sept – 

 

My own (draft) response

To whom it may concern,

Re: Including a group entry for nitrite inhalants in Schedule 9 of the Poisons Standard

I am a gay man – a member of the community most affected by the proposed changes. I have worked as an educator in HIV prevention since 2004 and as a researcher in the same field since 2013. In addition to undergraduate qualifications in Law and Arts, I hold a Graduate Diploma in Public Health and I am currently a PhD candidate at the ANU School of Regulation and Global Governance.

I have used inhaled nitrites, popularly known as ‘poppers’, on occasion since 2009. The effects of poppers use are extremely short-acting. They play an important role for many gay men in making sexual intercourse less painful, due to their principal effect of relaxing smooth muscle. Indeed, a topical nitrite product, glyceryl trinitrate, is available for the same purpose as a pharmacist-only medication.

In the United Kingdom, the Conservative Party MP Crispin Blunt spoke publicly about the benefits that nitrite inhalants offer gay men, during debate over legislation to ban legal highs. A Home Affairs Select Committee report found the use of poppers was ‘not seen to be capable of having harmful effects sufficient to constitute a societal problem.’[i]

Poppers have been used by gay men for sexual purposes since the 1970s. The medical literature shows a smattering of case reports documenting injuries attributed to poppers use. Only recently have there been reports of retinal injuries subsequent to poppers use. This trend needs to be understood in a regulatory context.

In the EU in 2007 and in Canada in 2013, regulatory action was taken to ban the sale of the chemical formulations commonly included in poppers products. This in turn caused some manufacturers to include different formulations in poppers products. Users have reported the reformulated products often cause an intense headache, ‘blue lips’ and a characteristic chesty cough in the days after use. The Lancet attributes ‘poppers maculopathy’ to the reformulated product.[ii]

This highlights the risk of product substitution posed by any ban. Following the EU and Canadian regulatory action, alternative products have been brought to market. These are packaged in aerosol cans. These are not nitrite inhalants and their mechanism is effectively the same as paint-sniffing. These products would not be captured by the proposed ban, and indeed the proposed ban is highly likely to increase the market for such products.

Poppers have been in use for nearly five decades with very few reports of serious harm, and recent case reports describe a previously undocumented form of harm. This suggests the harm is the result of the reformulated products, which were only adopted due to regulatory action. Banning nitrite inhalants as a class will have a significant impact on the capability of many gay men to achieve sexual pleasure and intimacy without pain and discomfort. In addition, it will expose a historically marginalised, stigmatised and criminalised community to a new vulnerability to criminal prosecution.

A more targeted ban, leaving long-standing formulations legal, would reduce the risks of rare but serious clinical harms, and prevent the import and widespread uptake of copycat products whose risks are substantially unknown.

Yours sincerely,

Daniel Reeders BA LLB (Melb) Grad Dip Pub Hlth (Flin)

[i] Home Affairs Committee, Psychoactive Substances (report), London: Stationery Office, 23 Oct 2015, p. 14 https://publications.parliament.uk/pa/cm201516/cmselect/cmhaff/361/361.pdf

[ii] Gruener, Anna M., Megan A. R. Jeffries, Zine El Housseini, and Laurence Whitefield. “Poppers Maculopathy.” The Lancet 384, no. 9954 (November 1, 2014): 1606. https://doi.org/10.1016/S0140-6736(14)60887-4.

 

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.

Continue reading “Making trouble within the discursive ecology of HIV”

We are creating new inequities around PrEP

When the debate about public funding for PrEP started up, I was concerned that it would go down the same path as PEP — with a set pool of funding, left to state/territory governments to administer, with de facto rationing based on sexual risk, and only available from a set number of locations. So my own position on PrEP was that it needed to be funded via the Pharmaceutical Benefits Scheme (PBS) and not rationed.

In the meantime, gay and bisexual men had two choices: importing generic medication from overseas or joining a PrEP trial like EPIC-NSW. (Full disclosure: I’ve done both. I’ve also worked on projects funded by Gilead. See my disclosures.)

A huge win in the fight against HIV/AIDS?

Australian PrEP distributor Dynamix International recently sponsored the magnificent ‘In bed with U=U’ campaign by TIM, featuring my gorgeous friends Mark, Davey and Ed, as well as an associated speaking tour with superstar advocate Bruce Richman from the Prevention Access Campaign.

At the Sydney leg of the tour, Dynamix founder Phil Joffe announced he’d been able to negotiate the cheapest price to import generic PrEP in Australia — $27/mo. This has provoked PAN to seek a better offer from its own recommended supplier.

Market forces, woo. 🙃

So I was bemused this week to see community orgs trumpeting a ‘huge victory’ in securing PBS listing for PrEP from 1st April. The mandatory PBS copayment is $39.50, or $6.40 if you receive a Centrelink payment and have a healthcare card (HCC).

We don’t know exactly what deal the government struck with the pharmaceutical companies, but the PBS advisory committed recommended a ceiling price of $240 per month. So consumers can pay more than the price to import generic medication from overseas, and it’s possible the government pays more on top of that. This problem isn’t specific to PrEP — this is a problem with the PBS copayment and the terrible deals Australia strikes with pharma companies. (Thanks Jonathan Nolan for that reference.)

This isn’t universal healthcare: it’s residualism — making public-funded PrEP available to people on a Centrelink payment and letting the free market sort out affordable access for everyone else. You can’t even get a rebate from private health insurance, because they only reimburse amounts above the PBS non-concessional copayment.

The response of some PrEP advocates on this issue has been disappointing. ‘It’s only $40 and if you care about your health you’ll pay it.’

As a PhD student I’m not eligible for Centrelink benefits, thanks to the Howard government. I get a stipend of $27K, which is a grand every fortnight — double what someone on Newstart gets. I’m living in Sydney while I do fieldwork, and for a while there I was paying 50% of my income on rent. I’ve written about living with major depression and complex trauma, and the marriage plebiscite did not help with that at all.

I have scripts for three medications — an anti-depressant, sleeping tablets, and a proton pump inhibitor. I routinely don’t get the second two scripts filled, and I put off appointments with medical specialists, because I can’t afford them. Caring for my health doesn’t change my bank balance.

There will be many people in the same situation — people on incomes too high to qualify for a healthcare card, but below a liveable wage. I’m only able to access PrEP because the EPIC-NSW trial exists.

Eliminating HIV depends on widespread access to free PrEP

Free access to PrEP via the EPIC-NSW trial has led to a 41% decrease in new HIV diagnoses among people who had good access to information about PrEP (i.e. not Aboriginal people or people born overseas). A similar drop occurred in London, although Public Health England immediately claimed this reflected early testing and early treatment for people living with HIV.

Why do I attribute that drop to PrEP? Because we saw years without any change in rates of diagnosis under a New South Wales (NSW) HIV strategy that emphasised early testing and treatment. This is confirmed by an epidemiological study presented at CROI.

Clearly, the priority for prevention strategy is making PrEP widely available for free.

In case it sounds like I’m bashing NSW, I’m not. The only reason we’re able to monitor the effectiveness of different strategies for HIV prevention in NSW is because the NSW state government committed to an ambitious and accountable prevention strategy known as Ending HIV. Targets for reduction were built into the KPIs for senior health department decision-makers, creating incentives to act. As the saying goes, ‘what gets measured gets managed’, and NSW is releasing and acting on timely data.

By contrast, the Victorian Department of Health and Human Services hasn’t made an annual BBV/STI monitoring report available on its website since 2013.

If we are serious about community ‘ownership’ of the HIV response, how is this possible when measures of prevention performance are kept secret?

We are seeing new inequities emerging around PrEP

Simply put, inequities are differences in health outcomes between groups that are preventable and therefore unfair (Whitehead 2001, cited in Braveman 2011).

When I write about preventing inequities in the gay community, people don’t get it. They feel hurt that I’m focusing on the gaps rather than acknowledging the great work they’re doing. They call me a hater.

Here’s the thing: inequities emerge because we do great work that is more easily accessible by some groups than others.

The fundamental causes of disease model suggests that inequities in health arise because some groups have more access to ‘flexible’ resources like money, literacy, education and prestige, so they can take up new opportunities for health quicker than others who have less of those resources (Link & Phelan, 1995).

This dynamic shows up again and again. It’s particularly obvious with the cancer screening programs introduced in the 1990s. And the NSW data on HIV infections shows it happening with PrEP.

In particular, overseas-born gay and bisexual men saw a 13% increase in HIV diagnoses in NSW in 2017 compared to the six-year average for this group. The 2017 data report concludes ‘PrEP uptake continues to expand, but work is needed to increase access for overseas born MSM.’

We saw this coming

I conducted community-based research on the sexual health needs of culturally diverse men who have sex with men in 2010 and the sexual and reproductive health needs of international students in 2012. I wasn’t the first to write about it — I was following in the footsteps of Maria Pallotta-Chiarolli in 1998 and Limin Mao with the Asian Gay Community Periodic Survey in 1999 and 2002. (That study restarted again recently.)

One of my own findings keeps needling my conscience. International students have much lower rates of HIV testing. Only 1/3 of international students apply for Australian permanent residence. Based on diagnoses in students applying for permanent residence Australia, I estimated that every year my home state of Victoria sends up to 18 students home with undiagnosed HIV.

It’s not a matter of translating some resources and putting them on a website or in clinic waiting rooms. It requires dedicated funding for campaigns and proactive community engagement and outreach.

(You know, the kind the marriage equality campaign didn’t do, with the result that ethnic and migrant communities got tagged, yet again, as inherently homophobic — when no attempt was made to change their hearts and minds.)

I am beyond frustrated with our failure to anticipate these inequities, to take them seriously until they show up in ‘the numbers’. And these are just the groups we count: activist movements like PASH.tm are still fighting for the right of trans MSM to be counted, accurately or in some cases at all.

There is every sign that ACON in New South Wales is already responding to the changing insights available from the epidemiology. Victoria should take note. And our next national HIV strategy better bloody emphasise widespread access to free PrEP.

Anyhow, let me end on an optimistic, inspiring and frankly emotional note with this gorgeous message from Mexican-American and Australian writer Ed Moreno.