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The story of HIV among First Nations peoples in Australia: the past, present and future

Introduction by Croakey: New data shows an ongoing decline in diagnoses of HIV among Aboriginal and Torres Strait Islander people, suggesting that “we are heading in the right path”, a leading researcher told a conference in Sydney this week.

In reviewing the past 40 years of HIV/AIDS in Australia, Professor James Ward, Director of the UQ Poche Centre for Indigenous Health and a Pitjantjatjara and Narungga man, paid tribute to “the collective agency, advocacy and leadership” of many fearless community leaders and members, scientists, and political leaders.

Despite some significant remaining challenges, he said it was essential to recognise the progress made in our national efforts to control and eliminate HIV, which could be attributed to courage, creativity, following the science, persistence, flexibility, and risk-taking.

“One thing is certain and that is the collective strength of our communities, they have the power and the voice that can get us through anything, like they have with HIV and like they did with the COVID-19 pandemic,” Ward told an HIV and AIDS conference. His presentation is published in full below.


Presentation by James Ward

Thank you and good morning, distinguished guests, community leaders, people living with HIV and advocates.

I would like to begin by acknowledging that I am on the unceded lands of the Gadigal people of the Eora Nation. I want to acknowledge their ancestors, elders, and future generations in their efforts for treaty and truth-telling and preservation of country and culture here.

I also want to acknowledge Aboriginal and Torres Strait Islander people here today, as well as our own national leaders, who continue to fight a good fight for HIV, but I also acknowledge those who are no longer with us, those who fought and those that we have lost to the HIV epidemic, over the last four decades. There are many.

I acknowledge brothers and sisters here living with HIV, and elsewhere, and all of those people who work to achieve respect, inclusion and equity in all facets of the lives of people living with HIV, and those working to prevent HIV.

This morning, I will address the intersection of HIV and Indigenous peoples, reflecting on the past, present, and future of this 40-year journey in Australia, particularly as it relates to First Nations communities.

However, let me begin with a couple of disclaimers: I will strive to do justice to this story, though it is impossible to cover everything in the short time we have. Sometimes the past and present are intertwined, as the legacies of the response endure. Additionally, I will use “First Nations” and “Aboriginal and Torres Strait Islander” interchangeably throughout.

To begin with the past, I must acknowledge our fearless leaders – the first among us with HIV, those who courageously disclosed their status to families and communities, those abandoned because of their diagnosis, and those we have tragically lost.

They spoke truth, called out injustice, and led, often in the face of ostracism, discrimination, and violation. Despite these hardships, they crafted careful, strategic responses for our communities, often working alongside other priority populations, though sometimes on the margins of these. Some of these leaders are still with us today.

The early context

In the early days of HIV in Australia, it’s important to remember the context for First Nations peoples. The 1980s marked a period of recovery from harsh colonial policies.

The first National Health Strategy was released in 1989, we had no universal declaration on Indigenous rights, and the first Social Justice Commissioner for Aboriginal and Torres Strait Islanders was appointed in 1993. By 1994, the Office of Aboriginal and Torres Strait Islander Health was established, and the Aboriginal Community Controlled Health Services (ACCHS) sector was still in its infancy.

Despite all of that, we collectively recognised the potential for HIV to wreak havoc in our communities if it were to take hold. We knew very early on that without due diligence and ongoing vigilance that we would be in trouble.

We could have had a very different story to tell today, about HIV, than the one I will talk of this morning – if weren’t for this vigilance, and our collective agency, advocacy and leadership.

And essentially that story of HIV among First Nations people today is one that is a relatively good news story relative to other Indigenous populations globally, and relative to other chronic conditions impacting our population over this time period.

Our HIV epidemic continues to be different to the one impacting non-Indigenous Australians.

Different, in that the rate of diagnosis has continuously hovered above the non-Indigenous population rate of HIV – sometimes five to seven times the rate (in the early days) and mostly over the last twenty years at between one to three times the rate.

Unlike the primarily MSM-driven [men who have sex with men] epidemic in non-Indigenous populations, our HIV diagnoses have been more heterogeneous, affecting women, heterosexual people, people who inject drugs, and people in both urban and rural areas.

This is important to note as this has made the response even a little more difficult to communicate about, to prevent and to respond to.

Current context

Today we estimate around 600 Aboriginal and Torres Strait Islander people are living with HIV, with about 20 percent of cases among heterosexual people, about 10 percent of cases among people who have injected drugs, and around half among MSM people. Around a quarter of all cases diagnosed in our population are among Aboriginal women.

It’s important to contextualise globally as Australia has done relatively well, especially when compared to Canada, NZ and the US. These two charts show just how well we’ve done here in Australia.

And that is largely due to the fact that we as First Nations peoples have benefited from the response Australia has provided over the last 40 years.

Some of the great hallmarks of the HIV response in this country, that we have benefited from, include:

  • our world renowned NSP [needle and syringe program] services, implemented early and hard
  • our enduring surveillance system, that has enabled us to understand where we are at our partnership approach
  • our enduring national strategies that all highlight First Nations people as priority populations.
  • Roll out of TasP [treatment as prevention] and PreP [pre-exposure prophylaxis].

Strategy matters

Importantly, I want to signal that the Aboriginal and Torres Strait Islander STI [sexually transmitted infections] and BBV [blood-borne viruses] strategy is the only population-based strategy of all STI and BBVs strategies.

It has been a guiding light to keep the focus on our issues. And there is often talk whether it is required, especially when new strategies are being developed.

But it is my firm belief that until we are on same playing fields in relation to structural and social determinants of health, then this strategy should remain.

The strategy signals to states and territories the priority of the First Nations peoples of this continent, it prompts actions at a state and territory level, it initiates strategy, funding and workforce at the same level.

Community focus

But it has also been community who have been pivotal in the response.

In 1987 Condoman was developed, and in 1992 with Bronwyn Bancroft’s Caring for people with AIDS – Everyone’s Business. Both health promotion products, of national and international reach, embraced our culture to drive messages that resonated with our worlds, our ways of seeing and our ways of doing.

Condoman was developed in response to the Grim Reaper HIV campaign that did little to empower people to make their own decisions, and take control of their own sexual health. Condoman’s call to action was don’t be shame be game, use condoms. Till today he is one of official superheroes.

Bronwyn Bancroft’s artwork produced in 1992 showed us compassion, with the waves around the central image representing the warmth of friendship and love that can greatly benefit the well-being of someone with AIDS. In the centre is an eye looking towards the future where a cure will hopefully be found.

The ANA held their first population led conference in 1994 outside Alice Springs and have run five since. The aim of ANA is to develop indigenous community led responses comprising viewpoints of priority populations. Also PATSIN was developed in 2003, also as a peer support and advocacy body for First Nations people living with HIV and will later this year celebrate 21 years.

Both have been important in the response and continue to function today.

Our elders have always been engaged in our work and continue to guide us on this journey. Their guidance and counsel have always been both unconditional and strategic.

Importantly, we have developed long lasting relationships with our International First Nations peoples to learn from and work with in combating HIV, with many of us involved in preconferences at IAS [International AIDS Society] meetings and generally collaborators and friends.

And on that note we hosted our biggest ever meeting here just down the road in 2014 almost 10 years ago today, with over 300 delegates preceding the 2014 Melbourne International AIDS Society Conference.

But there are many others working in communities that were equally concerned about HIV escalating in their communities. There was a focus on preventing cases from the Cape and Torres region to the south west of Western Australia, and all over many people were and continue working in the HIV response.

Primary healthcare

My own time working in sexual health in Alice Springs, in the 90s, the focus of our teams was to educate and prevent HIV, we were yarning with men and women’s groups, producing VHS videos in several languages across central Australia in men’s and women’s discussing HIV, recording audio cassette tapes with pre-counselling and post counselling information in languages for remote clinicians to use with patients.

The 8 ways to beat HIV model of care was developed and implemented widely and set up the requirements for primary healthcare to beat HIV.

Primary healthcare continues to be a leading service provider, providing not only diagnosis and treatments but a full suite of social and cultural support for First Nations peoples living with HIV.

Our work with ATSIHAW [Aboriginal & Torres Strait Islander HIV Awareness Week] and Young Deadly Free remain ever present and popular health promotion resources for people living across Australia.

ATSIHAW initiated immediately after the 2014 conferences, was running up until COVID-19 and was hugely popular with communities, with between 60 to 90 events held each year. It was an ideal opportunity for raising awareness of HIV at the community level.

Young Deadly Free is the largest collection of resources that have ever been developed for STI and BBV. The suite of resources includes animations, video radio and TV materials and posters. All developed with culture and strength based approaches. Much of this resource collection is focused on HIV.

And there are many other campaigns and work happening all across this nation.

Moving in the right direction

So I want to move more, now from the past to the present, and I’m pleased to provide some new data that have been prepared by the Kirby Institute, with input from investigators and advisory groups nationally.

Firstly you will see that ongoing declines in cases of HIV, something we haven’t been able to do for some time. We are heading in the right path.

While the actual number of diagnoses each year has hovered between 20 to 40 cases, most often in the 20s, this remains today. However, over the last 40 years our population has grown significantly.

It’s a comfort to know that we are finally moving in the right direction, after many shaky years.

We still have significant diversity in cases being diagnosed.

In relation to access for care for our people diagnosed with HIV, the treatment cascade looks very good. My group published a paper in 2017 that showed below the optimal 95-95-95 targets, where we were sitting around 90 percent.

I’m pleased to say since then, work being led by Dr Skye McGregor from the Kirby Institute, using data derived from linking HIV surveillance data to PBS data, shows that the majority of people in our community with HIV are now engaged in care and treatment. In fact, greater than 95 percent of people.

This is an amazing outcome and one we all should be proud of given difficulties in access to care for many in our community.

Challenges remain

But there are two other issues worth reflecting on before moving to the future…

One is to recognise the work we have done even in the context that many remote areas of Australia have some of the highest STI rates notified in the nation, and if not on the planet.

Data shows the highest diagnosis rates for chlamydia trachomatis and Neisseria gonorrhoeae (CT and NG) and syphilis in Australia happen to be where predominantly First Nations people live, except for a few areas.

Globally this is unique, as we are most likely one of the few populations with very high prevalence of STIs as we see them and very low HIV cases.

The explanation to this is related to the hallmarks of the response I outlined earlier but also most likely related to distance, remoteness and sexual networks being separate.

But it is fair to say that these very high prevalence rates of STIs remain a single important factor for us to keep an urgent focus on our HIV efforts as we move forward.

Another question worth considering is, why are our HIV rates so low when prevalence of injecting drug use are reported at two to three times that of non-Indigenous Australians?

This is most likely related to Australia being one of the first to implement such a comprehensive NSP program covering most of the continent and initially keeping HIV out of this population, largely from the get go.

I know there are many in the room who will know the architects of that response. But we still need to monitor closely outbreaks in this population given the networks and mobility of our population as well as the underlying determinants of health.

They are both interesting points for discussion, given relatively low HIV cases and given high prevalence of both STI and IDU. In my opinion, this needs to be brought to the forefront and highlighted as one of the success stories of Australia’s HIV response globally.

To be honest, we are not quite out of the woods yet with HIV, as every time there is an a case diagnosed in an area where we don’t expect to be one, there is a massive effort undertaken (ie outbreak response initiated) to ensure cases do not exponentially increase.

And this is required because of these underlying determinants of health and HIV, specialists’ availability and access to care.

Looking ahead

So now to the future. It’s exciting, and I want to turn to the newer strategies being talked about first; long acting PreP and treatment options.

These offer great opportunity for our people, but they have to be thought through. I have always said we don’t have a problem with science but we have a problem with implementation especially for our people.

So, we need to move forward with carefully thought out strategies to implement these to those who could most benefit from them.

It needs to be done at the start and not down the track when we realise that those that most need these are not benefiting from these, like we have seen with DAAs [Direct-acting anti-hepatitis C virus drugs] for HCV cure.

Second, an often talked about intervention currently is doxy prep for reducing STIs. I urge careful consideration on this, not for a priority population such as MSM, but as a strategy for all.

I am not pro or against this at present, but there are circumstances that are different between populations and I worry about universal strategies like this having adverse impact on the work we have already done, in controlling STIs and signals this sends to communities.

On one hand, doxy prep has the potential to reduce burden of STIs. But the drivers for STIs are different between populations.

Many young heterosexual Aboriginal people often experience STIs at a much higher rate because of where they live, and not the number of partners they are having. They are having the same number of partners annually as their non-Indigenous peers, it’s just that they are living in communities where prevalence is 5-30 times that of their peers.

And it’s where we have failed as a nation to reduce these [rates], despite loads of effort. And that is an equity issue.

So we do need careful consideration on the implementation of these strategies as universal interventions.

The next thing I think we have to do is get a better focus on quality of life, managing HIV and multimorbidity and ageing for people living with HIV – three very big issues.

Because there is one thing I do know, and that we as a community see too many of our leaders living with HIV, in and out of hospital often for lengthy periods, dealing with multi-morbidities, ongoing grief and trauma, and experiencing a much lesser quality of life.

Real and considered strategies are required to deal with this, working with clinicians, people living with HIV themselves and others who support them to make this a more even and easier path for them to move forward.

On another note, as we move forward we need better data and with data that is led and governed and Indigenous Data Sovereignty principles are operationalised.

We have very few data on where our cases are being managed, or on the denominator number of MSM, to understand initiatives like elimination or Prep uptake and or even to calculate prevalence of HIV. We have to get better at this and ensure that data is timely available accessible.

We as a nation also have to get serious about addressing racism, especially in the healthcare system. Too often our peoples face racism when they attend care, it ends up with either being refused, never returning, inadequately treated or turned away.

It’s about all of us unpacking the biases, structures and systems that operationalise racism, in our own practices and organisations.

As well, to move forward we have to get better at allowing sovereignty of communities to shine through so that they can develop locally led solutions, recognising that not one size fits all.

If we are to continue the success we have had, we have to be thinking about the right strategy, at the right level of potency, with the right population, at the right point in time and for the right length of time. And most importantly the strategy has to be led by us.

Stop the “war on drugs”

Before closing, it would be remiss of me not to state what we collectively need to disrupt is the criminalisation of drug use and recognise the impact this has on Indigenous Black and Brown peoples. The criminalisation of substance use is disproportionately harming our peoples.

The “war on drugs” has never been a war on the root causes of drug use, it has always been a war on the people using drugs through increased policing, prosecution and incarceration.

Until it is a war on the conditions which create the issue, it will continue to be a façade of action for political gain at the cost of the people who need health interventions, not criminalisation.

It will help our efforts in HIV globally and here.

Of course we need to maintain all of our efforts to Close the Gap, but I think a renewal of targets is warranted, so that social determinants of health are clear, as well as focus on intergenerational trauma to aid prevention and those living with HIV.

The final thing for the future is for us to get better at applying an equity lens because many of our communities face unique social and structural challenges.

This notion of equity is not treating everyone the same, it’s not about allocating a small part of the policy response or funding to the population.

Equity means fairness and justice, it means we are not all on the same playing field and it means where there is disparity, our actions have to be amended to account for the disparity. We want to be liberated from inequity.

Collective strengths

Finally, and in wrapping up, it is essential to recognise the progress made in our national efforts to control and eliminate HIV.

The fearless community leaders, scientists, political leaders, but brothers and sisters, people working out with our people have all got us to this spot.

If I was to summarise what it has taken to get us where we are:

It’s courage: as it takes bravery to step out of your comfort zone and challenge conventional ways of doing things.

It’s been creativity to come up with innovative solutions or approaches.

It’s been adaptability and flexibility, to adjust our methods or strategies and pivoting when necessary.

It’s been followers of the science.

It’s been persistence, that has helped us push through obstacles and setbacks.

It’s meant taking risks in a risk averse environment but it’s essential to be willing to take calculated risks and learn from the outcomes, whether they lead to success or failure.

Finally, all of these qualities need to be put into action.

One thing is certain and that is the collective strength of our communities, they have the power and the voice that can get us through anything, like they have with HIV and like they did with the COVID-19 pandemic.

What is common to the struggle we have every day is the rights to have equitable interventions to liberate us from inequity. What we want is for us to be sovereign healthy peoples in our own land, and the right to instigate and control our own destinies.

Thanks to all of you in the room and the many others out in communities who have done their bit to get us as First Nations peoples where we are today. No matter who you are! We have a bit more to do but we are headed in the right direction. Thank you.



See Croakey’s archive of articles on HIV/AIDS

 

 

 

 

 

 

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