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


Jolyon Attwooll


10/03/2022 4:22:44 PM

An AJGP editorial last year highlighted the abject failure in closing the gap for rheumatic heart disease. Since then, the divide has widened further still.

Young Aboriginal boy.
Aboriginal and Torres Strait Islander people have the world’s highest rates of acute rheumatic fever.

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


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Dr Paul Po-Wah Hui   11/03/2022 7:11:31 AM

To be more precise, aren’t these sufferer of rheumatic heart disease RHD which is an chronic disease actually died of complications like infectious endocarditis or acute heart failure? To diminish fatality, attention should also be focused on recognition of these potentially fatal conditions by emergency care providers. Who is providing this acute care services and what’s their clinical competency and training related to these conditions ? None of these questions are answered in the 4 corner Program.


Dr Leanne Joy Barron   11/03/2022 8:39:59 AM

It is important to note that the most important aspect of Rheumatic Fever treatment is PREVENTION - and that needs use of antibiotics for Strep throat in the first instance.
Unfortunately, with concerns about antibiotic resistance, there has been a widespread reluctance to treat sore throats with antibiotics.
However, the risk of Rheumatic Fever is high in Aboriginal populations, and urgent recognition and management of throat infections needs to be prioritised accordingly.
Management of Rheumatic Fever and its long term sequelae is much more difficult than prevention in the first instance!


Prof Mark Raymond Nelson   11/03/2022 2:36:20 PM

I think there is some evidence supporting the likely role of skin rather than throat infections driving the incident disease. Goes to poor living conditions, chronic scabies infestation etc. Agree a shameful condition to persist for the country as a whole and medical services in particular.


Dr Nyen Ling Yoong   11/03/2022 10:36:04 PM

I often locum in remote communities. We give Bicillin for anyone with impetigo or sore throat. The service sends out sms as well as provide transport for those with RHD to come for their bicillin., as well as followup. In some communities there is a dedicated health worker organising these. Often appointments for specialist care are missed, as they are not in community or do not wish to attend. We do as much as humanly possible for these patients. Would really like to know what else can be done.


Prof Max Kamien, AM. CitWA   13/03/2022 9:01:56 PM

From 2016 to 2019 I was a regular locum at an Aboriginal Medical Service in the Far-West of New South Wales. Every day I would see between two and six school age children with boils. Bacterial culture invariably grew a mix of MRSA and Streptococcus. The streptococci are undoubtedly the cause of the endemic cases of rheumatic fever. Rheumatic Fever is a notifiable disease but MRSA and streptococcal skin infections and boils are not. Public Health Units seem uninterested or lack the resources to devote to tackling the social and environmental determinants of rheumatic fever.
The MJA has been publishing articles about this need for at least 70 years. An old academic cynic, such as I, can only conclude that it is easier to write papers about rheumatic heart disease than to find the considerable resources that are needed to prevent it.


Dr Nyen Ling Yoong   14/03/2022 9:02:28 PM

There is plenty of evidence to support skin infection contribute to rheumatic heart disease, especially in remote communities. Patients are well when they present with skin infection. I have not come across a case of tonsillitis in the remote community in 10 years of work in these communities. I am in a remote community now and I have used 20 doses of bicillin in a week, 12 to treat skin infections and 8 for rheumatic heart disease prophylaxis. It is hard to give an IM injection to a child, but it has to be done to avoid the development of rheumatic heart disease. There are programs from different Australian centres to detect and manage rheumatic heart disease in our neighbouring countries of Nauru, Kirribati. Tuvalu and the Solomon Islands........