Rural community leads the fight against rheumatic heart disease

Maningrida, in Arnhem Land in the Northern Territory, is one of many Indigenous and remote communities that have been ravaged by rheumatic heart disease (RHD) and acute rheumatic fever (ARF). Infection rates in these communities are some of the highest in the world.

But the Maningrida community, its leaders, traditional owners, the school, the health clinic, Malabam Health services, local Aboriginal Health Workers and two doctors have come together to combat rheumatic heart disease and turn around this community health crisis.

Together, they were able to find children with undiagnosed cases of RHD and begin immediate treatment, while also educating students and the community about RHD in traditional languages.

Maningrida’s population is between 3,000 and 3,500 people. Two hundred of those, including 70 children, are living with RHD or are being treated for ARF. Each year they need 2,600 penicillin shots to fight off permanent damage from these diseases.

In March, Dr Bo Remenyi, a paediatric cardiologist, and Dr Josh Francis, a paediatric infectious disease specialist, worked with Aboriginal Health Workers in Maningrida, to teach them how to use handheld ECG machines. These machines are perfect for remote communities because they are easily portable. The team screened 450 school students and found 13 new cases of RHD, including two children who had to be flown to Melbourne for life-saving, open-heart surgery. A further ten cases were identified as borderline RHD.  

The training of 18 local Aboriginal Health Workers, coupled with easily-understood education in traditional languages with traditional metaphors has been life-changing. Nurses report that students will now ask for skin sores and sore throats to be checked, allowing for prevention and quick treatment with penicillin to protect against the long-term damage of ARF and RHD.

The community-led initiative also helps expand the ability of local health workers to find new ARF and RHD cases. Bo Remenyi is the only paediatric cardiologist in the Northern Territory, where the incidence of RHD and ARF is so high.

The power of collaboration has been well-recognised with Diddo, a traditional owner, saying ”it’s been the greatest community collaboration I’ve ever experienced.”

It is also an illustration of how a community with diverse languages can make progress against a daunting public health challenge with education, technology and through the help of local Aboriginal Health Workers.

On 23 October, The Snow Foundation and END RHD held an event at Parliament House in Canberra to raise awareness of rheumatic heart disease and to ask for Government support for programs designed to protect communities at high risk. They were joined at the event by community representatives from Maningrida, health workers, medical experts and the Brown Family, whose three sons have rheumatic heart disease.

“There is a long way to go – much more needs to be done. But progress to date has been hugely beneficial, with the Maningrida community and leaders dedicated to improving the health of their children and families,” said The Snow Foundation CEO, Georgina Byron.

“At our Parliament House event, we were able to show politicians the deadly risks due to a disease which is entirely preventable and to seek their increased support for funding communities to enable them to take action now.

“The people of Maningrida told their stories about the devastation caused by RHD and the powerful effects of great team-work, education in traditional languages, technology and resources for active case finding, quick diagnosis and effective follow-up treatment that can be managed in remote areas.”