A new report shows rates of rheumatic heart disease among First Australians remain high despite dedicated work from health professionals at the frontline.
The report from the from the Australian Institute of Health and Welfare, released today, is the first comprehensive look at data collected dating back to as far as 1997.
Rheumatic heart disease has been eliminated in most developed countries and most Australian cities, but remains a devastation in rural and remote communities.
It starts with a skin sore or a throat infection, but if left untreated can lead to open heart surgery or death.
In Katherine there are children walking around and going to school with the disease, and most of them won't make it past 50 years of age.
In June, the Katherine Times reported rates of rheumatic heart disease increasing with 53 per cent of all diagnoses stemming from the Northern Territory - reinforcing the urgent need for immediate on-the-ground action and additional funding.
"Today's report is the first comprehensive release based on the National Rheumatic Heart Disease data collection," AIHW spokeswoman April Roberts-Witteveen said.
"It presents data on the incidence of acute rheumatic fever and prevalence of rheumatic heart disease from the Northern Territory, Queensland, Western Australian and South Australian Rheumatic Heart Disease registers.
"At the end of 2017, these registers detailed 6,400 people who have had a diagnosis of acute rheumatic fever and/or rheumatic heart disease. Of these, 89 per cent were Indigenous, and children aged between and 5 and 14 years were the most likely to be diagnosed."
The Australian Institute of Health and Welfare began collecting data in the Northern Territory, arguably hit hardest by the disease, in 1997.
"Acute rheumatic fever and rheumatic heart disease are preventable and treatable," Ms Roberts-Witteveen said.
Both are linked with overcrowding, socioeconomic deprivation, and low levels of functioning "health hardware", such as working washing facilities, food preparation areas, and sewerage facilities.
The startling figures from the report show between 2013 and 2017 about 1,000 Indigenous people had a new RHD diagnosis.
And the disease is more likely to affect females.
The Mayor of West Arnhem Regional Council, Matthew Ryan said in June, additional funding would go a long way to help communities actively find and prevent new cases.
"Here in Maningrida, active case finding, with Indigenous health workers using handheld echo devices, accompanied by health education in traditional languages is a powerful way to change our community and make it stronger in the fight against ARF and RHD," he said.
Other experts, like Katherine's own health researcher Dr Alice Mitchell, say appropriate housing is key in the fight against the deadly disease.
"When you have dense living, which is actually a social strength in Indigenous society, infection spreads much faster.
"It starts with the strep germ, and if the shower doesn't work because the plumber can't get a flight from Darwin, or you can't wash your towel because there is no washing machine, you can see how infection can spread quite easily. It is a vicious cycle."
People working in the field have found there are significant issues with language barriers, making it hard to communicate the importance of keeping on top of the life-saving treatment, often an injection of penicillin every 21 to 28 days.
In 2017, only 36 per cent of Indigenous Australians who were prescribed preventive penicillin received 80 per cent or more of their prescribed doses, the report says.
Scientists are in the midst of creating a vaccine, but the 2018 Northern Territory Australian of the Year Dr Bo Reményi, said high rates of people were dying in wait.
"We need to take action now to prevent, identify and manage RHD - we cannot wait for a vaccine or other solutions because while we wait thousands of people will become ill, and hundreds will die."
Speaking at the 15th National Rural Health Conference, in March, Dr Reményi called for major political parties to commit to immediate community-led, on the ground action to prevent and eliminate RHD.
"RHD is the best marker for disadvantage between Indigenous and non-Indigenous Australians," Dr Reményi said in her speech.
"Some of our communities have the highest rates in the world of this disease - young children are being subjected to painful treatment and even open heart surgery, and they are dying way too early."
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