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 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:

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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:

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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.