When a sector reunites

Petrina Hilton and Graham Brown with a poster from the W3 Project at the the 2022 ASHM Joint Australasian HIV&AIDS and Sexual Health Conferences.

At the end of August, we travelled to Queensland’s Sunshine Coast for the 2022 ASHM Joint Australasian HIV&AIDS and Sexual Health Conferences.

This was the first time we’ve come together face-to-face as a sector since before a new little virus called SARS-CoV-2 turned up to disrupt life as we know it. It was a great few days reconnecting with colleagues and friends, meeting in person for the first time with people we’d only ever met online, and (of course) meeting lots of amazing new people.

As always happens after these kinds of events, I’ve come away with renewed excitement and motivation about the work we do — and with a feeling of gratitude and humility to be part of a sector with so many diverse, passionate, compassionate, and just downright awesome humans.

So this month’s update is all about what we did there and what we took away from the experience.

I hope you enjoy!

W3 Project

The W3 Project presented a poster (with an accompanying handout) highlighting the fact that traditional evaluations do not capture peer work’s full impact, and promoting the co-designed resources that we have developed to help peer responses evaluate their work more effectively (i.e. this website and the W3 Framework Guide).

PLHIV Peer Navigation Implementation Study

Tim Krulic (Living Positive Victoria and Australian Research Centre in Sex, Health and Society (ARCSHS), La Trobe University) presented results from his PhD research. His presentation, ‘Navigating Quality of Life: Effects of a peer navigation program for PLHIV in Victoria‘, described some of the diverse experiences of PLHIV with migrant backgrounds.

PozQoL, PozQol everywhere!

It was so exciting to see so much of PozQoL at the conference! There were several presentations showcasing various pieces of work using PozQoL. The ViiV Healthcare team were there as well, promoting their new Quality of Life Hub. The site provides information and resources to help healthcare workers use PozQoL to improve health outcomes among PLHIV.

The power of peers

A theme that came through strongly was the critical importance of PLHIV involvement in all aspects of the HIV response. And we’re talking everything — from clinical research to conversations about overarching HIV sector strategies to decisions about people’s own individual healthcare.

The sessions where I felt this came through the most strongly proved (perhaps unsurprisingly) to be some of my favourites.

Beyond Undetectable: Achieving long-term treatment success through patient-led care — Gilead’s Platinum Satellite Session (Monday)

The discussion panel was facilitated by NAPWHA’s Aaron Cogle and featured:

Gilead

The session centred the voices of PLHIV and focussed strongly on what patient-led care means, and why it is important, to PLHIV.

HIV cure: All in the mix – Bench, Bedside, Community (Tuesday)

The idea of a cure for HIV is exciting on many levels. (And the science behind it is absolutely fascinating!) But we cannot forget that, in HIV cure clinical trials, it’s PLHIV putting their bodies on the line.

NAPWHA’s Brent Clifton spoke powerfully about community perspectives of, and their role in, HIV cure research. Brent’s presentation highlighted some of the realities of what partaking in these clinical trials might mean for PLHIV. Overall, he really drove home why this kind of research simply cannot and will not be successful without meaningful involvement of PLHIV.

Quality over Quantity? Going beyond viral suppression in HIV care — NAPWHA and ViiV Healthcare’s Satellite Session (Wednesday)

The absolutely fabulous Vanessa Wagner facilitated this session.

Vanessa was joined by panellists:

This highly entertaining session saw discussions of two case studies. The case studies featured people living with HIV experiencing a range of challenges and included each person’s PozQoL responses.

As in the Gilead session above, the voices of PLHIV were central to the conversation. Once again, the importance of patient-centred care came through strongly. This included the need for clinicians to focus, not only on clinical markers, but also on PLHIV quality of life.

Social, Political & Cultural Aspects: HIV Cascades of Care (Wednesday)

The HIV Cascades of Care session gave PLHIV the opportunity to highlight what the HIV cascades of care mean to them.

Like Brent’s HIV cure presentation above, the session highlighted some of the realities of what experiencing the HIV cascade of care is actually like. (And featured this brilliant slide from QPP’s Chris Howard, which I think spectacularly sums up why PLHIV insights are important when considering what the cascade means in the day-to-day lives of the people expected to be on it).

So much left to do…

As uplifting as the centrality of PLHIV and their peer organisations and programs was throughout the conference, it is clear that there is a lot left to do. It’s always beyond frustrating to hear the extent to which stigma, discrimination, and criminalisation continue to impact PLHIV’s lives.

We heard sobering accounts of the gaps we still need to strive to close — from Adam Bourne’s (ARCSHS) presentation on PLHIV sexual satisfaction, to Jen Power’s (ARCSHS) reflections on the changes in HIV stigma research over the past quarter of a century, to the many presentations about PLHIV quality of life and of the experiences of people ageing with HIV, of women living with HIV, of people from migrant backgrounds living with HIV…

However, these same sessions often also spoke to the many incredible sector partnerships and the amazing people who are working together to close these gaps. I think as well, that the diversity of topics that we saw is testament to the sector’s determination to leave no one behind. And these are both things we can celebrate.

That wraps up another update

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Take care, everyone!

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