‘Dire’ new data highlights RHD challenge

Last month, the Four Corners program shone a light on the ongoing failure to tackle rheumatic heart disease (RHD), calling it a ‘hidden killer’ in remote communities.
 
It recounted the confronting story of several young women in Queensland who died from an illness that is vanishingly rare outside of Aboriginal and Torres Strait Islander communities.
 
These included 18-year-old Betty Booth, who was offered Panadol instead of the treatment she needed, despite receiving a cardiologist’s diagnosis.
 
So what inroads are being made into tackling the burden of illness, which in some Australian communities is even higher than in sub-Saharan Africa – and which the Federal Government has committed to eradicating by 2031?
 
According to new research by the Australian Institute of Health and Welfare (AIHW), the situation is sliding backwards.
 
A report published this week highlighted the number of Aboriginal and Torres Strait Islander people diagnosed with acute rheumatic fever (ARF), a precursor to serious heart disease, is rising.
 
At the time the Four Corners program aired, the most recently available five-year figures showed 2244 diagnoses of ARF from 2015–2019, itself a significant increase on the 1776 recorded from 2013–2017.
 
And yet, according to the new AIHW figures, the tally now stands at 2611 diagnoses from 2016–2020, with the Northern Territory recording by far the highest prevalence at 344 per 100,000 population.
 
Dr Rosemary Wyber is a GP, Senior Adjunct Research Fellow at the University of Western Australia, and head of strategy at ‘END RHD’, which seeks to bring together organisations to tackle the disease.
 
Her assessment of the AIHW figures is frank.
 
‘The new data is dire,’ she said on social media on Wednesday. ‘Australia has committed to eliminate RHD by 2031. That’s only nine years away ... and rates are rising rather than falling.’
 
While Dr Wyber says the current figure may include cases that would previously have gone undetected, the AIHW states the overall prevalence is still likely to be under-reported.
 
Its report says data on ARF is not currently collected by the Australian Capital Territory, Victoria or Tasmania health authorities, and cites another study saying many patients attending hospital for ARF or RHD are not reported to jurisdictional registers.
 
Meanwhile, Dr Wyber is at pains to stress the stories of human suffering that sit behind the figures.
 
‘Each of the cases in the AIHW report is another person facing the [same] racism and systemic failures as Betty from the Four Corners piece,’ she told newsGP.
 
Of the 476 deaths among people with RHD contained in the most recent AIHW report (note the detailed causes of mortality are not recorded), 322 people were Aboriginal Australians with a median age of death of 52 for men and 53 for women.
 
Their lives were likely to have been significantly affected by their condition in the preceding years.
 
Dr Wyber’s frustration is palpable, and she is calling for ‘urgent’ investment if the 2031 eradication target is to be reached and describes the most recent budget as a ‘continuation of the status quo’.
 
The role of primary care
There are institutional failures at the root of the barriers faced by Aboriginal and Torres Strait Islander in accessing effective and culturally safe care at primary and tertiary care levels, Dr Wyber says.
 
‘What the Four Corners program made clear was the effects of not providing that kind of healthcare are devastating,’ she said.
 
One of the few positive trends from the AIHW report suggested that the recurrence of ARF, which can be treated with antibiotics, is falling – although the data behind that is unclear.
 
What the new figures lay out very clearly, Dr Wyber says, is the failure to improve the circumstances that cause Strep A infections – which can then lead to ARF – in the first place.
 
‘This is a disease that is borne out of inadequate housing, overcrowded housing,’ she said. ‘We know that there’s a massive burden of skin sores in remote Aboriginal Torres and Strait Islander communities.’
 
For Dr Wyber, the role of primary care is paramount in stopping an entirely preventable illness from taking hold.
 
‘Turning off the tap of new cases means primary prevention, the vast majority of which is done in primary care, and tackling environmental health, which primary care also has a critical role in,’ she said.
 
‘Treating those Strep A skin and sore throat infections is critical to preventing new cases of acute rheumatic fever and rheumatic heart disease.’
 
RHD is a condition Dr Wyber describes as ‘emblematic’ of the gaps in delivering care between Aboriginal and non-Aboriginal Australians.
 
‘If we were able to line up all the pieces of this puzzle to tackle rheumatic heart disease, we’d really be able to have a transformative effect on the health system more broadly,’ she said.
 
‘What we continue to hear is that there’s a commitment to ending rheumatic heart disease, but funding is really not keeping pace to achieve that commitment.’
 
Dr Wyber also points to a blueprint for eradicating the disease that she has contributed to, the RHD Endgame Strategy, which was funded by National Health and Medical Research Council.
 
Its foreword is written by Pat Turner, the CEO of the National Aboriginal Community Controlled Health Organisation (NACCHO), who was one of the experts to appear on the Four Corners program.

‘The actions – or inaction – of today will be felt by the next generation of our people, and for generations after that,’ she wrote.
 
‘It is unconscionable to let them suffer as a result of RHD when we now have an Endgame to prevent it.’
 
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Aboriginal and Torres Strait Islander Health acute rheumatic fever rheumatic heart disease