Rheumatic heart disease (RHD) sounds like an old-fashioned problem that belongs to the era of our recent ancestors, when school finished at age 14 and the motor car was a novelty. But the disease is still with us, and its pernicious impact is at its most devastating in Australia’s remote Aboriginal and Torres Strait Islander communities.
Those who develop RHD will have their heart valves damaged by rheumatic fever, an inflammatory disease that can affect the heart, joints, skin, or even the brain.
It is considered a rarity in developed countries, after antibiotics largely stropped the spread of rheumatic fever in the middle of the twentieth century.
But recent research published in the Medical Journal of Australia showed that the rates of acute rheumatic fever and rheumatic heart disease for Aboriginal and Torres Strait Islander people in the Northern Territory are among the highest in the world. And the research advocates for an increased active case finding and using echocardiographic technology to identify previously undetected cases.
Dr Joshua Francis, a Senior Research Fellow at the Menzies School of Health Research at Charles Darwin University and a paediatric infectious diseases physician at Royal Darwin Hospital, led a team of researchers in the Northern Territory that undertook the study in Maningrida, in West Arnhem Land.
The echocardiographic screening study of people aged from 5 to 20 during an eight-month period in 2018 detected RHD in 5.2 per cent of those screened, including 20 participants who had not been diagnosed with the disease. Borderline RHD was found in another 17 study participants. Overall, the total prevalence of rheumatic fever and RHD among those aged between 5 and 20 was at least 10 per cent.
Dr Francis said that although RHD was now a far more visible problem than it had been, the COVID-19 pandemic had appropriately become the public health focus. Yet there is a coincidence of vulnerabilities between the coronavirus and RHD that are amplified in many remote Australian towns, including the shortage of housing that means there is overcrowding and an inability to limit the transmission of infection – in RHD’s case, the strep bacteria.
The mayor of a remote Aboriginal community in Arnhem Land has said the town’s children “don’t have a future” unless governments boost their investment in tackling the social determinants behind the disease.
Mr Matthew Ryan, mayor of West Arnhem Regional Council, recently said: “I shouldn’t put it so bluntly, but [our children] don’t have a future. If we don’t get the housing situation right, the health and education right, then you have missed the boat.”
According to National Health and Medical Research Council‐funded End Rheumatic Heart Disease Centre of Research the future is grim if nothing is done: more than 10 000 Indigenous Australians will develop RHD in the next 11 years. There will be 563 deaths and 1370 people will require heart surgery as a direct consequence of RHD. Their medical care will cost more than $317 million
Since 2008, the Federal government has released its annual Closing the Gap report into the progress towards achieving equality for Aboriginal and Torres Strait Islander people in health and life expectancy within a generation. This year’s report found there had been improvement in the mortality rate from heart disease, stroke and hypertension, but on the research evidence, there is still a problem with RHD.
“Progress is slow,’’ Dr Francis said of the annual report. “And the gap is much wider in some places than others. But taking the next step requires some hard conversations: remote northern Australia needs more housing. This is an obvious need not being met and as a nation, we need to do better.’’
A key issue is the basic shortage of healthcare for many remote communities. Dr Francis was a co-author of a recent letter to The Australian and New Zealand Journal of Public Health that showed Australian towns that had more than 80 per cent Aboriginal and Torres Strait Island people were less likely to have a hospital or be within 50kms of one.
“The Aboriginal and Torres Strait Islander towns without hospital services within 50 kilometres are all very remote towns in Northern Australia, which experience disproportionately high burdens of morbidity and mortality,’’ the letter states.
RHD research, treatment and policy has government and philanthropic support but Dr Francis maintains that the simplest approach to tackling the screening issue is funding. The most economically viable option would be to develop a training package that would develop local expertise to conduct the screening.
The potential impact of such an approach could be significant. Dr Francis’ team’s research observed: “Outcomes for Indigenous people with RHD are frequently poor, including heart failure, cerebrovascular accidents, and premature death; about 10% of those with severe RHD at the time of diagnosis die within 6 years. Ten-year mortality for 79 children (including 74 Indigenous patients) who underwent cardiac surgery for RHD in Melbourne was 14%.”
The current approach of “passive case finding for Acute Rheumatic Fever (ARF) and RHD’’ may expose children and young people with undetected RHD to the risk of poor long-term health outcomes.
“Our study illustrates the importance of echocardiographic screening for RHD in a remote Australian town where, despite an established territorial RHD register and access to free health care, an unprecedented burden of undiagnosed RHD was detected,” the study concluded.
“In Australia, we recommend sharing notifiable disease data and register information at the community level, so that communities with higher burdens of ARF and RHD can receive prioritised support for local responses, which should include support for active case finding of RHD by echocardiographic screening.”
Part of the strategy to bring the disease under control is END RHD, a coalition of organisations led by the Aboriginal Community Controlled Health Organisation (ACCHO) sector. It was formed to support communities at greatest risk of RHD, to advocate for improved health outcomes and to educate Australians about the role they can play in ending RHD.
The Snow Foundation, which plays an active role in the campaign to end RHD, contributes seed funding community-led solution, education and advocacy and working with many partners.
Georgina Byron, CEO of The Snow Foundation, congratulated Dr Francis’ team on the research being published in the Medical Journal of Australia. “This acknowledgement further illustrates the importance of active case finding in areas where the burden is high and it is a significant step in the quest to end RHD," she said.
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