More than 6000 Indigenous Australians are known to have the entirely preventable disease, which was eliminated from white Australia back in the 1930s.
Most sufferers are in the Northern Territory, and most are kids.
Unfortunately, statistics show sufferer’s rarely live past 50, and some die in their teenage years.
For seven year old Aldrick James from the remote Arnhem Land community of Maningrida, Rheumatic Heart Disease is just a part of life.
He was diagnosed when he was only three years old.
As he sits on an old tyre in this community, he explains that he has to have a painful injection every month.
"Get the message out, its time to do it now, go to the clinic and get it checked out,”
“And it’s stingy, like a mosquito,” Aldrick says as he pinches his mothers arm.
His mother, Vanetta Nalorlman, took him to the health clinic when he first showed symptoms, but she was told nothing was wrong and they were sent away.
She’s still coming to terms with her son’s diagnosis today.
“I feel like crying for him, when he first got it when he was three he was crying, and I was crying as well, it’s something a mother shouldn’t have to think about” Vanetta Nalorlman says.
“I’m now always worried that I will see my second son have the disease so I keep checking on him for the sores or signs,” she says as she looks down to her youngest son.
The disease is caused by the Streptococcus bacteria, which causes sores on the skin, joint pain and in most cases, a sore throat.
The bacteria is simple to treat and only requires 24 hours of penicillin.
“We're talking about the cheapest antibiotics in the world, we're talking about the first antibiotics in the world, so the solutions are simple” Northern Territory Heart Specialist Bo Remenyi told NITV.
When the bacteria is left untreated, sufferers develop Rheumatic Heart Disease.
There is no cure for the disease, and sufferers often undergo a number of open heart surgeries in their lifetime, which become more complicated with each operation.
Dr Remenyi said the persistence of the entirely preventable disease marks a health system failure to address “diseases of the poor”, and said governments need to ramp up awareness and services.
"Doctors in the communities say that if they excluded every single child from school with this infection and if they send them to the remote clinics, there would not be enough penicillin in the clinic to treat all the kids, there would be around 300 kids,” she said.
Her, and several other health professionals, have also blamed overcrowded housing for the spread of the disease.
"Some of my patients who I look after who’ve had open surgery return to living in households with two bedrooms and 18 people in two bedrooms,” she said.
“Now there’s no way, regardless of how hygienic you are, if you have 18 people in a two bedroom house it’s very close contact and germs are just going to spread like wildfire.”
Professionals are calling on the government to implement a cross-department approach to eliminate RHD in the Northern Territory, with a particular focus on housing.
The Northern Territory government has responded to the calls, labelling it’s ten year 1.1 billion dollar housing plan as a ‘game changer’.
"We’ve devised a new plan around adding space to houses, so Indigenous families in the bush like to live as a big extended family so we’re going to take that traditional style house…on a big serviced lot and start to give people what we’re calling ‘room to breath’ by adding additional rooms, and of course we’re also building new houses,” NT Housing Minister Gerry McCarthy said.
“We need a lot more Indigenous workers in our workforce helping our people because no one else knows our problems like we do.”
People living with the incurable disease frequently require open heart surgery, which involves thousands of kilometres of travel to southern hospitals because there is no cardiac surgery in the NT.
The Health Minister, Natasha Fyles, has told NITV she will investigate whether cardiac services are needed in the Territory, and will also consider funding ‘sore throat’ clinics to prevent the disease in it’s infancy, like other countries have successfully done.
Rheumatic Heart Disease Australia says it’s notified of two new RHD cases in the Northern Territory every week, and the disease claims one life every month.
Susie Munkara from the Tiwi Islands is doing a traineeship with the organisation, because she believes the ability to make change comes from within.
“It’s simple, we need a lot more Indigenous workers in our workforce helping our people because no one else knows our problems like we do,” she said.
The disease has been disproportionately affecting Indigenous Australians for decades.
Indigenous Territorians are eight times more likely to be hospitalised, and 20 times more likely to die from it than other Australians.
While communities wait for political change, they're taking action to prevent the disease themselves by creating awareness through music.
Young Aldrick James has a strong message for anyone who shows symptoms of Rheumatic Fever.
"Get the message out, its time to do it now, go to the clinic and get it checked out,” he sings from his tyre in Maningrida.
Other countries, including America and New Zealand, have been able to almost rid themselves of the disease with a well funded, cross-department government attack.
Experts are concerned if Australia doesn’t do the same, it will keep losing generations of its First Peoples well before their time.