Deadly Heart Trek works with community to eliminate RHD

The Deadly Heart Trek is visiting to check them for possible signs of acute rheumatic fever and rheumatic heart disease, which has been all but eliminated everywhere in Australia except in Aboriginal communities.

Acute rheumatic fever begins with a common Strep A infection, a sore throat or school sores, which if diagnosed correctly and quickly, can be treated relatively simply, usually with a course of antibiotics.

But if it isn't treated appropriately and acute rheumatic fever develops, it often comes back.

The fever can affect the heart, joints, brain, and skin - and each time it recurs it increases the likelihood of long-term heart valve damage, known as rheumatic heart disease.

There's no single easy diagnostic test, so checking children for possible signs involves multiple health professionals.

The Deadly Heart Trek brings together pediatric cardiologists, skin specialists, Aboriginal health workers, local health workers, sonographers and educators.

At the pop-up clinics, kids have their skin checked and their hearts scanned with a mobile echocardiogram - a type of medical imaging that uses ultrasound.

If a child is found to have possible symptoms, they are linked with local health services and their name goes on the national rheumatic heart disease register for follow-up.

For Noongar woman Vicki Wade, a director at RHDAustralia and Deadly Heart board member and cultural lead, the trek is "magic".

"We can connect community and schools, and then make sure local mob know about it ... That's what makes it different to other projects that I've seen before that aren't as integrated," she said.

When the Deadly Heart Trek plans to visit, one of the first steps is to engage a local Aboriginal guide who can facilitate conversations with the community.

In Alice Springs, Greg McAdam scouted out possible testing sites, made introductions and let the Deadly Heart team know who they needed to approach.

"These communities are so lucky to have highly skilled, trained, culturally safe people on Deadly Heart Treks - I think the magic is that clinical and culture are seen as both as important as each other," Ms Wade said.

The idea for the multi-disciplinary health team approach to rheumatic heart disease came from pediatric cardiologist Dr Bo Remenyi, who was researching the condition at Menzies School of Health in Darwin.

The trek began in the Top End and has visited the Barkley region, North Queensland and 22 remote central Australian communities.

Dr Remenyi believes that if there's enough political will rheumatic heart disease could be eliminated in Australia one day.

"Essentially three people can change the trajectory of rheumatic heart disease: the prime minister, our treasurer, and our health minister - and they need to chip in," she said.

"Australia is a first-world country and we're dealing with this tragic disease.

"And there's a lot of talk, but there's no action and there is no money."

For Georgina Byron, co-chair of the philanthropic organisation Snow Foundation, which co-ordinates and funds the Deadly Heart Trek, said when Dr Bo and fellow paediatric cardiologist Dr Gavin Wheaton explained the concept, supporting the idea was a no-brainer.

"We need to invest to make this disease go away because it is preventable," she said.

"So what this team is doing is just a small part, being invited into community and doing this education and early diagnosis, but at the end of the day, this team wants to be dissolved and wants communities to not have this disease.

"And that requires a whole other level of commitment and action and investment and it does need to come from government because it needs a concerted, long-term commitment."

While developing the concept, Aboriginal communities made it clear they wanted lasting education as well as health checks.

When the education teams walk into a classrooms, it's not for an ordinary lesson.

There's laughter, games, short videos and questions and answers - but they do have a serious message about 'cheeky' - the nickname the Deadly Heart team has given the Strep A bacteria.

"One of the main messages that we deliver to children is that you've only got one heart and if you don't look after it, it's going to present big problems as you get older and older," Mr McAdam said.

The team has developed education resources in multiple Aboriginal languages and is working with the Central Australian Aboriginal Media Association in Alice Springs to deliver more.

The rheumatic heart disease strategy was developed in 2020 and sets out a blueprint to eliminate the disease by 2031.

Prevention includes improving the social determinants of health - adequate water, infrastructure and appropriate housing - which are inadequate in many Aboriginal communities.

"The biggest part of our challenge is in tropical climates, as the temperature rises, it's even more important to really focus on skin hygiene," Dr Bo said.

"A big, big contributing factor in our situation is that if you're in a hot, sweaty environment and you don't have access to washing machines, clean water, all those things.

"And in tropical regions, like the Top End, washing your sheets is easy to say, but very, very hard to do practically, because you hang your sheets out, and they're never going to dry."

The Snow Foundation also supports Orange Sky, a not-for-profit which provides free laundry services in some remote communities.

"Orange Sky is awesome, but wouldn't it be nice if every home had their own washing machine that works, and there were local workers empowered to fix them if they broke down," Ms Byron said.

Health worker Roy Farmer joined the trek to Alice Springs from his home community on the Tiwi Islands.

Mr Farmer is qualifying as an allied health professional, and needs practical experience in conducting echocardiograms, but he also has lived experience of the disease.

When he was in primary school, Mr Farmer started getting pains in his joints.

After scans in Darwin, he was diagnosed with rheumatic heart disease and has been having painful penicillin injections every month for more than 20 years, with the treatment due to end next year when he turns 35.

When the kids come to the health clinic on Tiwi, he explains rheumatic heart disease, how the scan diagnoses the condition and how it is treated.

After being a regular patient at the clinic, it matters to Mr Farmer that he's working for his qualification.

He's spent weeks away from home, missing family occasions like his daughter's seventh birthday.

But Mr Farmer wants to see rheumatic heart disease eliminated, and he knows scanning is key.

"Hopefully, someone, sometime down the track, especially my kids, can look up and say 'I'm trying to do good for the community and the whole of the islands'," he said.

Mr Farmer's message - like Dr Remenyi's, Ms Byron's, Ms Wade's, Mr McAdam's and every other member of the trek - is that this approach works, but more could be done if it was properly resourced.

Then children would be able to thrive, without the threat of heart problems.

"More funding ...for more teams to try to get to every community in the Top End and all around Australia," he suggested.

The AAP journalist travelled to Alice Springs with the support of the Snow Foundation

Australian Associated Press