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This is where we tell your stories, cover topical issues and promote meaningful initiatives
The Rheumatic Heart Disease Endgame Strategy launched at the end of 2020. Some jurisdictions are now developing and launching their own RHD Action Plans. With the goal of eliminating RHD by 2031, we asked Dr Rosemary Wyber, Senior Research Fellow with END RHD, to simplify this complex preventable disease into five key tenets.
When the Endgame Strategy was launched by the End Rheumatic Heart Disease Centre of Research Excellence (END RHD CRE) and Telethon Kids Institute in late 2020, over 5000 Indigenous Australians were living with ARF or RHD.
“Without further action we can expect more than 10,000 new cases of acute rheumatic fever (ARF) – which is the preceding element of rheumatic heart disease (RHD) itself – by 2031,” Rosemary says. “Of those, more than 1300 would develop severe RHD and over 500 people would die with RHD.
“RHD has a major impact on people’s lives and communities. This is a devastating disease, and it affects young people, often in the prime of their lives, who’ve got significant responsibilities, culturally, as caregivers or family members in their communities.
“The peak age is 11 years that people are at risk of developing ARF, and then they develop chronic RHD in their teenage and early adult life.
“People die prematurely or live with significant burden of chronic disease.”
“People get an infection with the Strep A germ, or ‘strep throat’,” Rosemary says.
“This is more common in places where people live in overcrowded houses or have inadequate access to health hygiene infrastructure, like opportunities to wash hands or clothing.
“Because of such factors, people get a lot of Strep A infections early in their lives. We think there is a priming effect when people are exposed to multiple infections, so their body develops an autoimmune response to subsequent infection.
“This damages the heart valves and the joints – that’s ARF. Once people have had a severe or recurrent episodes of ARF, they go on to develop scarring of the heart valves, which we call RHD.
“It’s a tricky disease; it starts off with an infectious cause, which makes us think about environmental and social determinants of health, but if a person has RHD, they live with it for the rest of their lives. In that way it’s associated with the needs of ongoing chronic disease care.”
“Decades ago, ARF and RHD were not uncommon throughout Australia, including in capital cities and non-Indigenous communities,” Rosemary says.
“However, as access to health hygiene infrastructure and living standards has improved in a majority of Australia, the disease has increasingly contracted and now only occurs at high rates among Aboriginal and Torres Strait Islander People, particularly in remote communities.”
This impacts people’s lives in various ways.
“RHD increases the risk of pregnancy complications,” Rosemary says.
“It impacts education and employment. There are issues around people with RHD interacting with the justice and judicial system and receiving the consistent, regular treatment they need.
“In many ways RHD is emblematic of the Closing the Gap issues.
“The opportunity to end RHD is an opportunity to tackle many of the Closing the Gap targets and, more importantly, do it in a way that aligns to the priority reform areas of the Closing the Gap partnership agreement.
“It’s a tangible example of the many cracks in the system that continue to hinder health outcomes for Aboriginal and Torres Strait Islander peoples.”
Research is currently under way to develop a Strep A Vaccine and better diagnostic testing for ARF, and evaluate disease program and policy options, but it’s time to roll up the sleeves.
“At the end of the day in non-Indigenous Australia, we didn’t need those technical advances for RHD to essentially be eliminated,” Rosemary says.
“Aboriginal and Torres Strait Islander organisations are leading the work to end RHD, and they need appropriate funding to achieve that.
“[At END RHD CRE], we were very privileged to have the opportunity to put together an evidence-based, research-informed strategy.
“[Now], we see ourselves as having a supporting function, including finding opportunities to accelerate the work.
“This is no longer a research question, but an implementation question.”
“We’re empathetic to the huge amount of work coming across primary health desks at the moment,” Rosemary says.
“Everybody is conscious that remote primary care staff are exhausted and that there’s a workforce crisis. COVID-19 has silenced so many competing priorities.”
However, there’s overlap between different priorities, and solutions and end goals are often shared.
“Culturally safe, high-quality, remote primary care is critical to all this work,” she says.
“For disease-specific projects – including RHD, trachoma, ear disease and chronic kidney disease – the core is about supporting comprehensive primary care services and making sure that our voices are consistent about that, because none of these conditions are just a technical fix.
“By tackling the root drivers of ill health, we’ve got the opportunity to improve outcomes across a range of diseases.
“[Our research] has certainly taught us the importance of a remote primary care workforce, and resourcing and models of care and systems of delivery, which really make it possible for Aboriginal and Torres Strait communities to receive the absolute best quality of care available in the country, as close to home as possible.”
You can catch Rosemary at the 2022 CRANAplus Annual Conference in Adelaide from 4 – 6 October. Head to cranaconference.com for more information and to register.