Ageing with HIV: What You Told Us, and What Happens Next
Earlier this year, Living Positive Victoria asked our members and community aged 50 and over a simple question: what do you need as you age with HIV?
This survey has been a long time coming. We knew from our day-to-day work that the needs of our older community members were evolving, that managing HIV in your 50s and beyond looks very different from what the HIV sector has traditionally designed for, and that the gap between what people needed and what was available to them was growing.
We couldn’t be more appreciative of those that took the time and care to complete the survey. It is because of your contribution that we’re able to continue advocating, connecting and supporting our growing community of older folks living with HIV.
Responders to the HIV and Ageing Survey
73% metropolitan. 22% regional.
With respondents from across Victoria, from inner Melbourne to rural and remote communities.
Ninety-nine members responded, sharing honestly and generously across dozens of open-text answers about grief, fear, isolation, pride, and loyalty to a community that has sustained many through decades of difficulty.
Managing 2 or more long term health conditions alongside HIV.
Ageing with HIV rarely means managing one thing.
This is the most detailed picture we have ever had of what it means to grow older with HIV in Victoria, and it exists because our community gave us their time and their trust.
What our community told us
of respondents said mental and emotional wellbeing is their highest priority as they age with HIV, the top concern across every age group, every part of Victoria, every level of health complexity.
Yet a third of respondents do not feel confident navigating mental health services. As one member put it:
“Having had HIV for more than forty years it still surprises me that access to mental health professionals is stigmatised by health workers who misunderstand what it is to have good mental health.”
of respondents lack confidence navigating aged care and home care services.
More than half of you told us you lack confidence navigating aged care and home care services.
But when we read what you wrote in your own words, we understood something the numbers alone do not capture: this is not confusion about a system. It is fear about whether that system will be safe for you.
of respondents only seek support when they need it
Which means LPV needs to be easy to find at short notice, not just present when things are going well
You told us you are afraid of losing your LGBTQIA+ identity in residential care. You told us you fear HIV-phobic environments. You told us you want to know how to navigate these services, and that there are places that will accept and respect you
Long-term survivors told us their experience is being minimised, compared away, or closed down.
“Your heart sinks and you just disengage.”
regional respondents told us location is a barrier to engaging with LPV.
For those of you living outside Melbourne, the picture that emerged from this survey was stark. Nine in ten regional respondents told us location is a barrier to engaging with LPV. Several of you described not a gap in services but an absence. One person wrote simply: “I live in a rural area. There basically is no support
members said yes or maybe to being involved in shaping what LPV builds next.
Online accessibility was the single most requested program feature across every group we surveyed, including regional respondents. That message is clear, and it is one we can act on.
What our community’s survey built
These answers built a case for LPV to take action on this evidence, in our members’ own words and numbers, to apply for federal funding to address exactly what our community told us was missing: dedicated, individual support for people ageing with HIV who need help navigating aged care, mental health services, and systems that too often feel unsafe.
The grant was successful, and it’s part of something bigger
On Monday 3 August 2026, Minister for Health and Ageing Mark Butler announced more than $18.1 million in federal funding under the LGBTIQA+ Health Program, supporting 18 projects for the health and wellbeing of LGBTIQA+ Australians nationwide.
will fund a new LGBTQIA+ Advocate role at LPV, working alongside our existing Peer Health Promotion Officer (Ageing with HIV) as a combined team dedicated to this cohort.
It’s LPV’s first funded staffing increase in three years, and it exists because our members told us, clearly and specifically, where the gaps are.
Of the 18 projects funded nationally in this round, LPV’s is the only one focused specifically on people aged 50 and over. Ageing well with HIV has not historically been a well-resourced part of LGBTIQA+ health funding, and this grant changes that, at least for Victoria.
We’re also proud to see this funding round recognise the needs of PLHIV more broadly. Two of our national HIV-sector peers were also successful: Queensland Positive People (Wellbeing+, $749,365) and Meridian, ACT (Peer Pathways, $698,227), both delivering peer-led, HIV-informed support in their states. And ACON’s national TransHub platform ($750,000) will strengthen trans health information and access across the country, work that connects directly to LPV’s own commitment to trans and gender diverse members ageing with HIV. This is an exciting, national moment for community-led HIV and LGBTIQA+ health work, not just a Victorian one.
The LGBTIQA+ Health Program is funded by the Australian Government and administered by LGBTIQ+ Health Australia.
Help us build it properly
This is where we need our community again.
We’re establishing a Project Steering Committee to provide oversight and guidance as this project gets underway, and we’re looking for 2 to 3 community members from the LGBTQIA+ and ageing-with-HIV community to help steer it. Meetings will be held online, and we particularly encourage members in regional Victoria to put their hand up. This is designed to be accessible no matter where you live.
This isn’t a token seat. The Committee will have genuine input into how the project runs, and community voice is a required part of every meeting, not an optional extra.
What the commitment looks like:
- A two-year commitment, aligned with the life of the project
- Monthly meetings in the project’s early months, stepping back to bi-monthly once things are established
- All meetings held online
How to express interest:
Send a short letter to Adrian Hubble (Programs Manager) at ahubble@lpv.org.au outlining why you’d like to support LPV on this project. We’d love to hear what draws you to it and what you’d bring.
EOIs close end of August 2026, with a view to convening the Committee in September 2026, alongside the new Advocate role commencing.
If you want a genuine say in how this new role and program are shaped, not just told about it after the fact, we’d like to hear from you.
Full details of the Steering Committee Expression of Interest are available in our companion announcement. Download it below.