Why are Aboriginal Australians still dying from an entirely preventable disease?

WARNING: Aboriginal and Torres Strait Islander readers are advised that this article refers to people who have died.

This week’s Four Corners was particularly hard to watch for Janelle Speed.
 
The investigative journalism program focused on a remote corner of north-west Queensland, and the deaths of several members of the Aboriginal community from rheumatic heart disease (RHD).
 
It is an illness Ms Speed, an Aboriginal cultural consultant, had addressed in an editorial written in the Australian Journal of General Practice (AJGP) less than a year ago.
 
The ABC program highlighted the distressing case of Betty Booth, an 18-year-old diagnosed with RHD – an entirely preventable disease that now barely exists among white Australians.
 
Despite making multiple visits to nearby Doomadgee Hospital, Ms Booth never received the care she needed and subsequently died in September 2019.
 
Within 12 months, two other women in the community had also died from the same illness, despite also seeking care at the hospital.
 
The program, ‘Heart Failure: An investigation into the hidden killer in remote Australian communities’ drew attention to the increasing incidence of RHD in the area, which is currently at ‘a rate higher than sub-Saharan Africa’, according to presenter Louise Milligan.
 
For Ms Speed, a Biripi/Dhungutti woman, the problem has been anything but hidden. The editorial she co-wrote in AJGP was borne of her frustration that the illness not only still existed but had become even more prevalent.
 
It highlighted a 10-year review of the Closing the Gap initiative in 2018 that showed no improvement in outcomes for the disease – and reported statistics showing the problem had worsened.
 
‘Aboriginal and Torres Strait Islander people in Australia have the world’s highest rates of acute rheumatic fever [ARF]/RHD,’ Ms Speed wrote.
 
Assessing acute rheumatic fever which leads to RHD, as ‘a pivotal example of the need for early diagnosis’, she said the disease is a prime example of a condition that is easily treatable with ‘low-tech solutions readily available’.
 
In an article on the clinical approach to preventing ARF in the same edition of AJGP, authors also highlighted the extraordinary inequities in the disease’s presence in Australia.
 
‘It is unlikely that such a stark contrast between two populations living within the same national borders exists for any other disease or on any other continent,’ they wrote.
 
Ms Speed told newsGP she could not bring herself to watch Four Corners immediately, as she knew how confronting its contents would be. When she finally did, it was in the morning to reduce the risk of it disrupting her sleep – and her response was as she had feared.

‘What I thought is … that’s extremely sad, but unfortunately, that’s extremely common,’ she said.
 
The issue has a particularly personal resonance for Ms Speed, not just as a First Nations woman but also directly in her family.
 
One of nine siblings, Ms Speed said her brother is among those who developed RHD as a teenager and has had to live with the debilitating impact – including heart attacks and quadruple heart bypass operations.
 
A bad situation, getting worse
Since she wrote the editorial for the May 2021 edition of AJGP, the situation has deteriorated.
 
Despite a Federal Government goal of eliminating RHD by 2030, the latest Australian Institute of Health and Welfare figures show the problem is now even more stark.
 
The editorial highlighted 1776 diagnoses of ARF between 2013–17. For 2015–2019, that total had increased to 2244. Meanwhile, the rate of notifications had increased from 77 per 100,000 in 2015 to 102 per 100,000 four years later.
 
For Ms Speed, a better coordinated response between different parts of the health system is essential to reverse the decline. The program highlights how, despite a clear diagnosis of Betty Booth’s illness by a paediatric cardiologist, she still fell through the gaps.
 
Looking beyond clinical aspects and improving cultural competency within primary care and the wider health system are another key, Ms Speed believes.
 
‘While we focus on understanding the history and self-reflection, we don’t really focus on what culture is and what the cultural biases are,’ she said.
 
‘Cultural competency is not just about connecting it to culture, it’s about connecting it to health outcomes. We don’t focus on how culture connects clinicians to the issues that Aboriginals have.
 
‘There’s the perspective that it’s the Aboriginal people who are the problem, not that clinicians haven’t worked out how to better to set the system up.’


 
Proposed solutions
In its response to the program, the Queensland Health Minister Yvette D’Ath described the women whose stories featured in program as ‘badly let down’ and said their cases are under investigation.
 
She also announced the state would launch a dedicated rheumatic heart disease strategy, backed by $7.3 million in funding.
 
Federal Health Minister Greg Hunt also issued a statement, which flagged some developments in the Government’s approach  
 
‘The new National Partnership Agreement on Closing the Gap – to which all Governments committed in 2020 – identifies fundamental reforms to change how governments work with others to achieve better outcomes for First Australians,’ it states.
 
‘Working in genuine partnership through shared decision-making and co-design with the Aboriginal community-controlled sector is critical and is the foundation of the new approach to the Government’s Rheumatic Fever Strategy commencing this year [2021–22].’
 
In addition to $25 million committed to support the strategy, Minister Hunt said a further $12 million will be invested ‘to support preventive activities on the ground’. He also cited funding to help the University of Western Australia develop a Strep A vaccine ‘to accelerate the elimination of RHD’.
 
Ms Speed, in the meantime, remains sceptical but committed to a cause she has campaigned for over many years.
 
‘The light gets shone on the sad story about chronic disease in Aboriginal communities all the time, the kidney disease, diabetes,’ she said.
 
‘Now we’ve got rising cancer rates, and on top of it, we’ve still got third world diseases.’
 
To make progress, she believes greater leadership is required.
 
‘Everything seems to be focused on the clinical aspect of it,’ she said.
 
‘Well, where’s some of the focus on the other skills that you need to be a clinician?’
 
Despite the clear frustrations with an issue she knows only too well, and has now been brought into wider focus by the Four Corners team, Ms Speed holds on to hope that those goals may one day be within reach.
 
‘I am still here trying to do the same thing,’ she said.
 
‘I may not be overly optimistic about how it’s gone over the last 30 years though I am optimistic for the future because I think it’s all possible.’
 
The RACGP has an online course designed as an introduction to Aboriginal and Torres Strait Islander cultural awareness in general practice. See: Cultural awareness and cultural safety training.
 
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Aboriginal and Torres Strait Islander health acute rheumatic fever RHD rheumatic heart disease