Gavin Wheaton was only 26 years old when he saw his first case of rheumatic heart disease.
That was 40 years ago, when Dr Wheaton was a training paediatric registrar working in the remote Central Australian community of Yuendumu.
His second patient of the morning was a 12-year-old girl with acute rheumatic fever.
It was the catalyst that set in motion a lifetime of work to eradicate the condition.
"It left an absolute indelible mark on me," Dr Wheaton said.
Now, he's one of a team of volunteer cardiologists and health professionals travelling through remote Australia scanning for the condition in First Nations children as part of a program called Deadly Heart Trek.
A disease of disadvantage
Rheumatic heart disease is caused by damage to valves in the heart, brought on by acute rheumatic fever.
The fever originates from inadequately treated skin or throat infection caused by the group A streptococcus bacteria.
The disease, once developed, can be worsened by persistent cases of acute rheumatic fever, which often increase in severity.
The spread of the infection is more common in remote Australian communities because of persistent problems with housing, sewerage, and hygiene.
"It's a classic disease of disadvantage," Dr Wheaton said.
"If you address hygiene, sewerage, housing and overcrowding … then this problem goes away."
Trek visits Central Australia
The idea for Deadly Heart Trek was first hashed out by Dr Wheaton and fellow paediatric cardiologist Dr Bo Remenyi over dinner several years ago.
Now, the team travelling through Central Australia consists of 21 volunteer cardiologists, sonographers, general doctors, First Nations guides and educators.
It will tour through remote towns near Alice Springs, and end in the Anangu Pitjantjatjara Yankunytjatjara (APY) Lands in South Australia, screening children for rheumatic heart disease and skin conditions such as scabies and school sores.
The trip to north-west SA sand the NT follows previous visits through the Top End and far north Queensland.
Dr Wheaton said cardiologists used ultrasound machines to scan for rheumatic heart disease.
"The aim of the screening is to detect cases early and prevent further damage to the valve," he said.
"When we go and screen using ultrasounds in high-risk populations and locations, we always find rheumatic heart disease.
"Our aim, then, is to detect [it] early, before it's become more severe, and to initiate treatment and follow up for these kids."
More work to do to
Dr Wheaton said conversations about the disease had to go beyond diagnosis and treatment, and to the often poor standards of living that spread the infection.
A recent report from the Australian Institute of Health and Welfare found that in 2021, only 41 per cent of Indigenous Australians in the NT received at least 80 per cent — the target amount — of prescribed doses of the antibiotic that reduces the risk of contracting acute rheumatic fever.
To be effective, the intramuscular antibiotic injection must be delivered once every four weeks.
Noongar woman Vicki Wade, a First Nations heart health leader with the Heart Foundation and member of the Deadly Heart trek steering committee, said a lack of consistent treatment meant more young children were going under the knife to repair significant damage to the heart.
"They will end up in the years to come to be the ones that are going off to have valve [open heart] surgery, if they get repeated infections of acute rheumatic fever," she said.
"It's highly likely, because they're living in the conditions that acute rheumatic fever thrives in."
New treatment options should be on the table
Dr Wheaton said it was evident the success rates of current treatment could be improved by the development of alternative treatment options — and ultimately, the delivery of a long-awaited vaccine.
"There has been work over many years now on the possibility of a vaccine against the streptococcus bug," he said.
"There is some promising research, and a candidate vaccine.
"That will go through the usual trial process ... but meanwhile the incidences of rheumatic fever and rheumatic heart disease have not declined."
In a statement, federal Health Minister Mark Butler said the government remained committed to ending rheumatic heart disease as a public health issue by 2030.
Funding for combating rheumatic heart disease in high-risk communities doubled in the October budget, to $12 million.
NT Chief Minister and Minister for Health, Natasha Fyles, said a whole of government approach is required to address the social determinants of health which lead to acute rheumatic fever and rheumatic heart disease.
"We have a number of programs in place to support healthy living environments and educate families on the causes of rheumatic heart disease," she said.
While Ms Wade wished the trek did not need to take place, she said she was proud of the advocacy it provided for First Nations people living with the disease.
"It's just an absolute disgrace that this is still happening in 2023," she said.
"We wish we didn't have to tell these stories to the government. But they've got to listen."
