Health Experts say dangerous, yet highly preventable diseases are persistently present in many remote communities in Australia. Rheumatic Heart Disease is one such disease that's largely eradicated in the developed world, but Australia still has some of the highest rates globally, and it's disproportionately impacting Aboriginal and Torres Strait Islander people. Aboriginal and Torres Strait Islander doctors and health workers say it's continued prevalence is a sign of a failing system.
** A warning for Aboriginal and Torres Strait Islander listeners. This story contains reference to Aboriginal people who have died.
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TRANSCRIPT
“One of the remote communities that I was doing a, a short stint in was, what I would say was affected endemically.”
That's Dr. Sarah Jane Springer, is a Wiradjuri woman, rural generalist, and GP obstetrician.
“So there was lots of families that had had scabies and couldn't get rid of it, and were passing it around for months and months and months on end. And there was even stories of some of those community members buying new beds and buying new lounges in the attempt to try and get rid of it.”
For more than 20 years, she's worked in Aboriginal Health and primary care across communities in remote Australia.
She says the severity of the scabies endemic she saw recently in one remote Queensland community was a stark reminder of the persistent impacts preventable diseases are having in remote Indigenous communities.
“So scabies is a condition in which, people contract a mite, generally from being in close proximity to one another or from bedding or, linen and that type of thing. So it is quite a contagious disease in some ways. And generally speaking, it can be easily treated if people have got access to things like Lyclear, which is a medication that you put on topically from the neck down. But also, you know, it requires bedding changing, it requires washing of all of those items.”
She says if untreated, scabies can contribute to serious health conditions.
“It can cause lumps to the skin, really, really itchy. And essentially, you can get secondary infection into those places in which people might scratch the top of the skin off. They get infections, and then the knock-on effects can be strep. They can be causing, renal conditions. There can be consequences of even rheumatic heart disease that has been seen in, in some studies.”
Rheumatic heart disease (RHD) is a preventable, but potentially fatal condition caused by a bacterial infection of the throat and skin, which, without treatment, can result in permanent damage to the heart.
Yuwi man from Mackay Dr Shannon Springer is an adjunct professor at Griffith University, and also works as a GP in remote communities.
He says early diagnosis and treatment of Strep A infections in the throat or skin is essential to stop it developing into RHD .
“So rheumatic fever is an immune response to, to strep A, which is an infection. And if you get repeated episodes, that can damage the heart valves. So people can present in the spectrum of their illness. So, you know, we could see people with early throat infections, and they get antibiotics. Some people will not present, and that strep infection goes on and causes an immune response, and then the heart valves become damaged over time. So when we're looking at the spectrum of illness when people don't have access to good care, and not getting the right treatments, then the likelihood of heart disease, rheumatic heart disease, becomes quite high.”
People with RHD require ongoing medical care, regular antibiotic treatment and possibly cardiac surgery.
The devastating disease was largely eliminated in developed nations by the mid-20th century.
In Australia, the introduction of penicillin to treat infection, along with improved access to healthcare in the 40s and 50s, led to a dramatic decline in the rates of the disease in most parts of the country.
According to the End RHD Centre of Research Excellence, the disease is considered a third-world disease... yet Australia still has some of the highest rates in the world.
Torres Srait Islander Woman and Australian Indigenous Doctors Association [[AIDA]] President Elect Dr Alicia Veasey says the stark reality is First Nations people are massively over-represented when it comes to RHD.
“We're really seeing that persistent, the persistence of rheumatic heart disease particularly, that is disproportionately affecting remote communities. And of those cases, ninety-three percent of those cases are Aboriginal and Torres Islander people.”
In 2023, three young Aboriginal women died in the remote northwest Queensland community of Doomadgee, due to preventable complications with RHD.
Dr Veasey says their deaths were a devastating sign of a failing system.
“It's a disease that is prevented by adequate housing, access to health that is culturally safe, continuity of care, digital interfaces between health systems to ensure that people aren't lost. These are not things that individual people in communities can control. This is the responsibility of government, of health systems, and its leaders.”
Dr Shannon Springer says in his decades treating conditions like RHD in remote communities, one of the most common contributing factors is lack of adequate housing.
“When people are getting cases of rheumatic fever, you could pretty much bet that there is an issue with housing in some of those communities. So, you know, poor functioning house, that's overcrowded, that contributes to recurrent skin infections or recurrent, you know, otitis media, like ear infections, respiratory infections, scabies, and strep A, um, are all contributed to, people living in close proximity.”
He says houses in many remote communities aren't built to support Aboriginal and Torres Strait Islander families to stay healthy.
“Having appropriate bathrooms, you know, having more than one bathroom, washing facilities, having hot-- running hot water, having appropriate sewerage, bedding, you know, these are all important things... access to clean running water is really important as well.”
Access to health care is also a major issue, with many in remote and very remote communities having to travel vast distances for treatment.
But the issue is compounded for First Nations communities as Dr Springer says small rural health services and hospitals are often not equipped to provide culturally safe care.
“There are instances where Aboriginal and Torres Strait Islander people will avoid going to hospital because they're worried about the care they will get, or they'll self-select where to go. So that becomes an issue around access. So having culturally appropriate services is, central, to people presenting earlier rather than later.”
Dr Sarah Jane Springer says Australia's remote health system currently relies heavily on a transient workforce, which makes it difficult for patients to receive consistent care, and for practitioners to have deep understanding of the communities they're working with.
“That includes doctors, nurses, Aboriginal health workers, allied health workers that, you know, come in, do their stints and things, and then they go, and then there's a fresh set of eyes or a fresh team. And this is a consequence, I believe, of a breakdown of our systems and us not really putting the weight and the, and the importance on having a consistent workforce that has got that continuity of care with our communities.”
She says improving outcomes requires change in the way Australia approaches health in remote regions at a systemic level.
"The issue doesn't just sit cleanly in health, and it doesn't just sit cleanly as an Aboriginal issue. This is a, this is a, a symptom of a system that's struggling and not providing the, the level of support and care and, basically the elements of human rights to a subset of the population.”
At both federal and state levels, government programs and strategies have been rolled out to tackle RHD in remote communities.
In 2021, the federal government announced $95.8 million dollars to be spent from 2022 to 2028 to address rheumatic heart disease, through its Rheumatic Fever Strategy.
The Northern Territory and Australian governments have jointly invested $4 billion over 10 years to improve housing outcomes in remote communities.
A spokesperson for Queensland health also acknowledges the role housing plays in supporting the overall health and well -being of First Nations peoples, in a statement to SBS, which in part reads:
“We are taking a whole-of-system approach – focusing on prevention, culturally safe healthcare, community-led solutions and addressing the social determinants of health.”
Both The Northern Territory and South Australian Health department say they're also working to boost access to primary healthcare and strengthen services in remote communities.
A spokesperson for S-A Health has told SBS it's working improve healthy living environments through oversight of drinking water, wastewater and food safety, as well as partnerships with Aboriginal communities and organisations.
But Dr Sarah Jane Springer says more can be done.
She says genuine, whole-system change needs to be driven by Aboriginal and Torres Strait Islander people, and informed by their ways of knowing, being and doing.
“Because a lot of the time what happens is that, you know, government systems or even, even the healthcare system as one part of the bigger system, often does work on community, not with and for community. So cultural governance is basically a fancy term to, to talk about a process in, in which we are coordinating the, the local voices to be able to come up with the solutions that are required so that it actually does work for their context.”
Advocates say the success of solutions built by and with impacted communities is clear in countless Aboriginal-controlled initiatives.
One example is the Remote Laundries project, run by the Aboriginal-owned not-for-profit organisation Aboriginal Investment Group in partnership with the CSIRO.
The not-for-profit project provides free, commercial grade laundry facilities, with eight laundries currently running in communities in the Northern Territory.
CEO Elizabeth Morgan-Brett says project was built to tackle the health issues associated with overcrowding and a lack of washing facilities.
“It started with a conversation where our Katherine regional director stood up and said, "Eight out of 10 of our babies are getting scabies before their first birthday." And she said, "Think about that. Eight out of 10 of our little ones are getting a microscopic parasite burrowing under their skin, laying eggs, and infecting their little bodies, and someone needs to do something about that." ]]
She says the project's positive impacts are now abundantly clear.
“We know this has been effective because within two years of operation in Barunga, scabies presentation at Sunrise Health Clinic dropped 60%. We also know there have been no new cases of rheumatic heart disease in Barunga since we launched that laundry. We've since launched seven more. We're building actively three at the moment with funding for another four, so within the next three years we'll have 14 laundries operating not only in the Northern Territory but across Western Australia.”
The organisation's Indigenous Engagement Manager, Lachlan McKenzie, says genuine collaboration with community has been key to the project's success.
“That's what we do through, you know, our 12 to 18-month consultation process, working with community, Traditional Owners, Elders. It is all about gaining that trust and working with them to build what they need, what they want. It's theirs. They need to take ownership of it. It's not just putting something in community and walking away and tapping yourself on the back of the shoulder. It's really letting community drive what they have in their community.”
Dr Alicia Veasey says the success of Aboriginal owned and led projects like this sheds light on what works.
She says it's clear the devastating impacts preventable diseases continue to have in remote communities are are not inevitable.
“We know a great deal about what works, and we've built an amazing evidence base for that. So what is needed is sustained investment that allows and enables community solutions and action. Indigenous leadership, Indigenous workforce. We need culturally safe mainstream services that are accountable for providing that care. We need reliable medicines and infrastructure that is climate resilient and able to adapt to our community's needs, and a health system that provides continuity and quality of care regardless of the postcode or who you are.”
