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.

One thought on “We are creating new inequities around PrEP”

  1. Dear Daniel

    I have exactly the same concerns here in Queensland.

    Meanwhile HIV rates are rising in both heterosexual Indigenous men and women in the regions and amongst Indigenous MSM in the city and babies are still dying of congenital syphilis.

    I intend to ask the Minister what will happen to the almost 3000 Queenslanders on our local PrEp Trial who have been receiving the medication for free. Do they now have to pay? If so, I wonder what the “drop-out” rate will be. Subsequently will infections actually rise?

    Attached is a photo we saw in Harlem in 2015.



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