Good evening, colleagues and friends.

Thank you for inviting me to your Annual General Meeting to give The Peter Rowland Memorial Address. 

It is an honour to be here and reflect – with you – as we approach World AIDS Day 2024.

When, I say it is an honour to be here, I mean it most sincerely.

I grew up just over the border in Queanbeyan and, later, Braidwood … I lived previously, during my university years, in Dickson … I paid my rent in those years working at, what was then, a brand new, bright and shiny Adam and Eve adult shop in Fyshwick … those were the days before internet shopping … when whole busloads of adult shoppers would take day trips from Sydney … 

It was here in Canberra that I took my first anxious and uncertain steps as a gay man.

… where I first learned there was a tribe for me.

… that there were spaces in which I could be comfortable … I could be safe … where I could be myself.

… it was here I connected with my first boyfriend … (although that would probably be more meaningful if I could remember his name), 

… and where I learned, after just one volunteer shift, that bar work was probably not for me.

… those years in Canberra were formative … 

… and the site of many of those formative moments was, of course, the old Meridian Club in Braddon.

When the time came to leave here, I moved to Brisbane … over time I lost my connection to this place … and, in what feels now like the blink of an eye, decades had passed.

It wasn’t until I became more formally involved with the people living with HIV movement that I learned that the Meridian Club in Braddon existed no more … but that its memory lived on through Canberra’s LGBTIQA+ community organisation, Meridian.

On behalf of that boy, transitioning to adulthood … and others whose experience might have been similar to mine … thank you for preserving some of the history and the connection to the Meridian Club.

You don’t need me to tell you of the historical importance of that place … of the personal significance it held for so many. 

The decision you made to retain the Meridian name was inspired … for me, it demonstrates this organisation was built on a clear community-connected vision … a vision which almost guaranteed your success and sustainability.

But, of course, I am not here to talk about myself … in a development that still blows me away at times … the boy whose formative experiences were lived here in Canberra went on to become the President of the National Association of People with HIV Australia 

So … with World AIDS Day again on approach, I am here to talk with you about NAPWHA … an organisation I am enormously proud of … and about our ongoing national response to HIV … in which it is my great honour to play a role representing people with HIV.

At this time of year, each year, we recall those we have lost to HIV/AIDS.

It is also the time we look back on what we have achieved … and acknowledge those things we still need to do to support all people with HIV in our communities.

Each year on December 1, many of us choose to call up the faces and names of those we have lost.

Some were family.

… Others were old mates or lovers. 

… Some we worked with and admired. 

… Others were famous faces. 

… All left us too soon. 

If we lived with HIV through those years and survived, we may still wonder why? 

Was it luck or genes or simply good timing that allowed us to carry on? 

For some of us, this is the simple reason we continue to volunteer or work in the HIV sector ... to continue to contribute, because so many others cannot. 

Beyond the melancholy and sadness, this is also a time when we’re given opportunities to come together as a community, to celebrate each other, the diversity which makes us all so different, … and the thread of shared experience which binds us together … and to celebrate our victories.

As Australians, we have much to be proud of in our response to the HIV epidemic.

Since the early days, Australia has shown the world how to manage a population health crisis, the likes of HIV.

From fear and uncertainty, we launched a response built on community compassion. 

… and, not surprisingly, the drivers of that response were the people directly affected. 

People with HIV and our friends provided the earliest support and then the activism required to bring about the systemic changes we needed.

Partnership too has been vital for our success. Think how the community, health sector, research, government, and industry have united to make historic moves.

Think early needle exchange programs that prevented HIV from spreading into the population of people who inject drugs, and into the wider population.

Think the 1990s Baume Report that removed the need for repeat drug approval processes, and streamlined how we now get access to our life-saving medicine.

Think of the Australian based trials that proved to an international audience the reality of Undetectable equals untransmittable, or U=U. 

And today, as Australia looks likely to not only meet but overtake global targets, it is people with HIV and the organisations that represent us that are driving our efforts to achieve the virtual elimination of domestic HIV transmission in Australia by 2030.

From the early days of activism and support we have transformed into agencies of professionals. 

At the National Association of People with HIV Australia, our commitment is to everyone who is HIV positive.

… that includes to those who may not yet know the are HIV positive.

NAPWHA’s latest venture to roll out an HIV self-testing service is testament to this. 

Funded first as a trial and now extended through funding which flowed from the work of the Federal HIV Taskforce in 2023 … work which culminated this time last year with the release of the Taskforce Report on World AIDS Day.

The process underpinning NAPWHA’s HIV self-testing is simple. 

… you order a self-test kit on line … it’s provided free and with total confidentiality. 

The self-test kit arrives at the address you nominate at the time you place your order … it is sent in plain blank packaging … and is followed by another kit, three months later.

For any of you familiar with an app called Grindr. You’ll find quick access to the service via your own profile page.

With this confidentiality and ease of access HIV self-test service has proven to be very popular … and more than 13,000 orders dispatched so far.

NAPWHA’s self-test service is teaching us things about where we need to focus if we are to reach all those at risk of acquiring HIV.

Most requests for test kits are coming from outer metro and regional and remote areas. 

Half of the requests we receive are from people who were born overseas. 

And thanks to an optional survey included in the ordering process, we know that 38% of orders have come from people who have not tested for HIV within the last two years.

Through the survey we know and I can report to you here that 20% of the orders we receive are from people who have never before tested for HIV.

Let’s take a moment to consider what those numbers mean … this is an anonymous self-test service, accessed by people who have self-assessed their own risk of HIV.

… approximately 2600 people who have self-assessed their own risk of HIV and accessed NAPWHA’s self-test service, have NEVER BEFORE tested for HIV … 

… and approximately 4900 people, who have self-assessed they are at risk of HIV and accessed NAPWHA’s self-test service, have not been tested for the virus within the last two years.

… to put that into further perspective … the current estimate of people in Australia who are living with HIV but who are not yet diagnosed stands at 2500.
Accessing those 2500 people … 

… connecting them to care;

… ensuring they are retained in that care;

… supporting them to have access to effective anti-retroviral treatment, 

… has remained one of the greatest challenge of the more recent years of the HIV response.

Our seeming inability in the past to access those 2500 people living with HIV but unaware they have the virus has been one of the intractable problems of Australia’s HIV response … particularly when you consider the high likelihood that a large proportion of new transmissions in Australia are originating from those 2500.

NAPWHA has argued consistently that people with HIV have a central role to play … not just in the HIV treatment and care space … but also in relation to testing, which has traditionally been the domain of others. 

Put simply and directly, as people with HIV we know from our own first hand experiences of the circumstances under which HIV prevention efforts have failed.

The successes of NAPWHA’s self-test program are evidence that when people with HIV are given the opportunity to design and deliver testing and other programs that we can deliver results.

World AIDS Day is also a time to acknowledge the gaps in our national HIV response. 

… To consider those who are not doing so well… 

… Those living with HIV who are unaware of the fact. 

… Others struggling with new diagnoses. 

… People new to Australia who still face enormous barriers to permanent residency based simply on their HIV positive status. 

… Long term survivors who are faced with a multitude of other conditions that require time and money to manage. 

… Many who are encumbered by the rising cost of living and coping without secure housing. 

I know this a particular challenge for many of you here in the ACT, as it is nationwide.

I also understand that several of your S100 GPs have recently retired … leaving an absence of bulk billing options. 

Access to affordable housing and healthcare is a challenge for too many of us.

Given this is your AGM, I thought I’d also talk a bit about NAPWHA’s structure … and where people living with HIV who live in the ACT fit within that.

We have an exclusive federated membership.

Full voting membership of NAPWHA is open only to ‘people living with HIV organisations’ in each State and Territory … and our Constitution requires equal representation of every State and Territory.

In the large States, that’s a relatively straight forward proposition … in Queensland, our member is Queensland Positive People … in NSW, our member is Positive Life NSW … in Victoria it is Living Positive Victoria … South Australia, Positive Life SA … Western Australia, Positive Organisation Western Australis (POWA).

That leaves the Northern Territory, Tasmania and the ACT, where there is no established stand-alone ‘people living with HIV’ organisation.

So, the ACT has, like the Northern Territory and Tasmania, an organisation which is construed to exist by NAPWHA’s constitution. 

For you, that organisation is construed as ‘People Living With HIV ACT’ … the members of which are taken to be the ‘community of people living with HIV in the ACT’ … and you have been a full voting member of NAPWHA since the beginning.

Representatives of all of NAPWHA’s members must also be people living with HIV … so, among others, your good friends … our good friends … Danny , Frank and Marcus have fulfilled these roles over recent years.

… Danny has also been a long-serving director on the board, finishing up just 12 months ago as Secretary/Treasurer of the Association.

It is testament to the strength of the relationship between people living with HIV in the ACT and Meridian … and previously with the AIDS Action Council … that this arrangement has worked effectively in the interests of people with HIV living in the ACT at the national level over many years.

That has not necessarily been the case in other jurisdictions … where infighting and dysfunction between AIDS Councils and people living with HIV in those places has left people with HIV at times without effective representation.

I place on record here, my sincerest thanks … and the gratitude of the organisation and of NAPWHA Presidents before me … to people with HIV living here in the ACT …for your good sense, your pragmatism, your ability to come together and to set aside any differences and disagreements which might have existed over time … and, for your absolute focus on the people you represent and to serving your communities and their interests.

You are the ‘gold standard’ nationally for the representation of people with HIV in the smaller Australian jurisdictions … 

Looking forward … at NAPWHA we have every confidence you will continue to provide that ‘gold standard’ … we were very pleased to welcome Josh as Meridian’s new CEO and to introduce Josh to NAPWHA’s members at our Annual General Meeting and National Forum held in Sydney earlier this month. 

We were also pleased to see that Meridian secured ongoing funding for BBV/STI work through an ACT Government commissioning process, which was a result of an extensive and multi-year consultation. 

And as a result, you have been funded for seven years to deliver a range of services, including those for People with HIV, such as case management and health promotion.

Secure seven-year funding has made you the envy of all other HIV organisations in the country.

We understand the work that goes into these processes and congratulate you all for your hard work. We also understand the time it can take to realign and ensure that the services meet the requirements of the positive community.

I am confident you are in good hands and that together we can move forward.

Thank you for partnering with NAPWHA … as we fulfil the central role of people living with HIV in our national effort toward achieving the virtual elimination of domestic HIV transmission by 2030 … whilst also ensuring people with HIV are not left behind … and are supported to ensure good health, wellbeing and quality of life beyond 2030 … to the very end, and for as long as it takes.

And thank you all for having me and allowing me to address you this evening, at your AGM.

Scott Harlum