An entirely preventable "killer" disease plaguing remote communities in the Northern Territory will never end unless Aboriginal workers become the backbone of prevention, an Indigenous health organisation warns.
Sunrise Health chairperson Anne-Marie Lee is the co-author of a four-year, landmark study - published in the International Journal of Environmental Research Public Health - which was conducted in three Aboriginal communities where it is not uncommon to see children under 10 bearing the vertical, long scars of open-heart surgery.
"Nothing can work in Indigenous communities unless you employ local people," Ms Lee said.
"Rheumatic heart disease (RHD) is a killer.
"It's a killer, and it's killing a lot of my young ones."
RHD is thought to be mostly eradicated in first-world countries and is only found in the most disadvantaged areas of developing countries.
But in Australia, rates in remote Aboriginal communities beset by social disadvantage are among the highest in the world.
Studies to date have largely focused on secondary and tertiary prevention once somebody's already been diagnosed, instead of the root causes, such as addressing severe overcrowding in houses and a lack of effective education.
Ms Lee said in her community of Barunga, about an hour's drive from Katherine, there was not enough suitable information about the disease for families.
She lamented the notion that short-term fly-in-fly-out health workers could make meaningful inroads.
"We need more of me … because they trust us," Ms Lee said.
"We have strong local knowledge.
"I go to people's house. I sit on the floor — I don't go and sit on a chair — and I have a good discussion with families."
Ms Lee said her work to help people with RHD navigate the health system, reduce their household health risks and get to a clinic every month for life-saving penicillin shots, resulted in the disease rate falling.
Part of a 'jigsaw puzzle'
Senior Clinical Research Fellow at Menzies School of Health professor Anna Ralph is the study lead.
She said it was the first in Australia to look at ending RHD "through better environmental health messages, making healthier houses, and investing in people with knowledge about stopping infection transmission".
"Ending RHD is a big jigsaw puzzle of lots of different bits of activities, that all need to happen in a coordinated way," Professor Ralph said.
"This is one really important part of that jigsaw puzzle.
"In the absence of a vaccine for strep [streptococcus] … what we need to do is stop infections and we need to treat them when they happen."
She said the findings were promising but needed to be scaled up to whole communities.
Training Indigenous health workers
A spokesperson for federal Health Minister Mark Butler said the government was committed to eliminating RHD by the end of the decade.
He said the government was training 500 new Aboriginal health workers and funding upgrades to more than 15 First Nations health services across the country.
"Labor will invest $1.5 million for portable echo-cardio machines and training to improve screening efforts in remote communities … [and] invest in water infrastructure, housing for homelands and remote communities."
A NT Health Department spokesperson says a clinical nurse specialist provides education — including videos in the local language — and visits all patients when they are diagnosed with RHD.
She said an interpreter was arranged "as required".
The spokesperson said the government was collaborating with agencies, including Aboriginal Community Controlled Health Organisations, to develop a RHD strategy and action plan for the NT, which is expected to be finalised in 2023.
She said $430,000 was granted annually to remote communities to deliver projects that supported healthy living environments and which assisted in reducing the transmission of infectious diseases.
