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We've come a long way

The last few years has seen a monumental shift in the way people living with HIV see ourselves, and the way the rest of Australia sees us. Now, we might finally be ready to cast off the outdated idea that HIV could limit our life in any way, shape, or form. It’s not all up to us, but as a community, the time is right for us to make that demand—of ourselves, each other, and those around us.

This month marks four years since I started my journey as an HIV activist. Hardly a blip on the radar when you consider how many decades my fellow HIV-positive community members have been fighting this good fight. However, in that four years, there has been much change and I find myself reflecting on what feels like a quantum leap from 2012 to today.

We’ve seen an increase in HIVisibility in the community and in the media, thanks to big moments like the 2014 AIDS conference in Melbourne. We can see a growing acceptance that an undetectable viral load means it is virtually impossible to pass on HIV to our sexual partners, thanks to the results of the PARTNER study.

We’ve seen our HIV-negative friends and lovers embrace new forms of prevention via PrEP. The only serophobic law on the books in Victoria was repealed. Women living with HIV are now integrated into most campaigns.

We’ve still had a few missteps in that time. AIDS isn’t “over”, despite some over-excited claims earlier this year. Overall, HIV rates have plateaued but new infections in Indigenous communities and in the heterosexual population are increasing. HIV criminalisation continues to occur. The shape and structure of our HIV community organisations are changing. Some of these organisations have not and will not survive, but new energies and new movements have sprung up.

At the heart of this change is, to borrow an ugly marketing term, a degree of perception management. How we as people living with HIV see ourselves is of paramount importance, but for that to go beyond the clunky and sometimes unhelpful world of identity politics and the empty aphorisms of the wellness movement, we need to figure out where HIV sits in the broader picture of our health and life.

That’s why it is so encouraging to see our national peak body, NAPWHA, refocus on HIV as an aspect of our lives, instead of being the thing that defines us. At the heart of this new focus is an app developed with support from Viiv Healthcare — My Life + — as well as a new campaign featuring real people living with HIV, speaking about where HIV fits into the broader picture of their overall health and wellbeing.

This is a welcome, if not slightly overdue, acknowledgement of where the HIV movement in Australia needs to get to. For too long, the organisations charged with representing us have been beholden to an HIV narrative that, at best, gently reminds us that the Grim Reaper days are behind us and, at worst, is incapable of letting go of them.

There is space for everyone in the next phase of living with HIV in Australia. There are those who survived the worst days, whose experiences and struggles defined what was a world-leading response to the AIDS epidemic. There are those who came to HIV in the awkward in-between period where it was too hard to talk about what we’d been through, and as a result, advocacy and activism went silent or unheard.

There are those who have arrived recently to our country, from places that continue to experience an AIDS crisis the likes of which our Western experiences can’t hold a memorial candle to. Then, there are those for whom HIV is entirely experienced in the 21st century, with a fast-tracked path to one-a-day treatment regime (if that’s what they choose) and a lived reality in which HIV is just one of many potential physical or mental health conditions and broader social issues.

Any app or campaign that aims to go beyond the needs of our high-needs or newly diagnosed poz community members is a necessary and welcome step. That is not to say those two groups are not deserving of attention and focus, in fact, as the landscape of the HIV movement in Australia changes it is incredibly important that we as a community do not forget those who struggle with their HIV.

That’s why My Life + is a promising addition to the HIV toolbox in Australia. It helps people living with HIV chart their journey beyond pill reminders and viral load test results. For people juggling co-infections and treatments for mental health or other chronic conditions, the app allows them to monitor their entire health experience. Beyond the world of medications, reminders, and doctors’ appointments, the app also allows people living with HIV to track how their daily life events are impacting their happiness and sense of self.

The app may not be for everyone, but anything that seeks to shift the HIV narrative in Australia and empowers us to be more than those three letters is welcome.

Nic Holas is an HIV activist, writer, and co-founder of The Institute of Many (TIM), Australia’s largest independent movement for people living with HIV. Nic has been engaged by NAPWHA and ViiV Healthcare as a community advocate for the MyLife+ app.

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