Maningrida is 500km east of Darwin, a small Indigenous community in Arnhem Land, where the rich red soil clings to the sole of your shoes. It is hot and hard country. It is also a community dealing with a preventable disease that has caused illness and death across a generation.
Rheumatic heart disease (RHD) starts with a strep infection and what seems to be just a sore throat or skin sore. But it can, if not identified and treated, be fatal. The disease in Australia now predominantly effects only Aboriginal and Torres Strait Islander people and we have some of the highest rates in the world. But through a community-led approach to prevent and eliminate RHD in Maningrida, children’s lives have been saved, suffering reduced, and other Top End communities are seeking similar interventions for immediate action to save their children from a lifetime of serious disease and premature death.
Led by the Maningrida community and supported by Philanthropy Australia member The Snow Foundation and key doctor partners, Dr Boglarka Reményi (2018 NT Australian of the Year and the only paediatric cardiologist in the Northern Territory) and Dr Josh Francis worked with a team to train four local Aboriginal healthcare workers from Maningrida, to do heart scans using portable hand-held devices which can detect RHD. These locally trained workers used these devices and helped children feel at ease to discover three cases of RHD so serious that they required emergency open-heart surgery.
“In affected communities, it is vital to try to identify the disease as early as possible. The earlier you get to it, the better,” The Snow Foundation CEO Georgina Byron explains. “The most effective way of achieving that was to communicate what symptoms to look for, and ensure kids and families understand the need for prevention - healthy hygiene - and the need for treatment if diagnosed - penicillin injections on time, every time.”
In Maningrida, the whole community came together - traditional owners, doctors, the local school, the local health clinic and the Mala’la Health Service to tackle their high rates of rheumatic heart disease. They educated children and families through their local language, and metaphors. The next stage of the process was for local Aboriginal health workers to use the hand-held cardiac monitors to screen the hearts of more than 450 children. Further away, in the neighbouring homelands, another 170 children were screened.
The results were potentially life-saving – three kids, one aged eight and two aged 12 – were air-lifted to Melbourne and Adelaide for emergency heart surgery. They have since returned safely to their community. A total of 32 cases of RHD were identified. These children with RHD require painful penicillin injections every 28 days on time, every time for at least a decade to prevent them from open heart surgery.
“It’s been the greatest community collaboration I’ve ever experienced,” traditional owner Joseph Diddo said later. The increase in awareness led to many other kids turning up to health clinics for tests after self-identifying symptoms.
Across Australia, doctors estimate that RHD claims the lives of two Indigenous young people a week. The wide-spread disease engaged filmmakers Mike and Sue Hill in 2016, who made a set of short films in local languages to help raise awareness and educate the community about the disease. They also released the film, Take Heart, narrated by Stan Grant, to engage politicians through events at Parliament House, community centres around Australia and national television audiences so Australians learn about the disease and its often-tragic consequences.
For some years, The Snow Foundation, together with Aspen Foundation, BUPA and Heart Foundation, had been working with and supporting Mike and Sue but during 2017, it became clear that to achieve lasting change and ultimately elimination of this disease, there was a need for political advocacy and greater public awareness. Georgina at The Snow Foundation sought advice from a range of sources including policy and political advisors, Indigenous advisor Vicki Wade, the Maningrida community, END RHD, Dr Reményi and Take Heart to help develop a campaign that would achieve greater awareness and political commitment to support early diagnoses and identification on the ground. The campaign was taken to Canberra: a marketing awareness campaign, featuring billboards, social media and a TV ad, designed to capture the attention of both major political parties. This was combined with a landmark Parliament House event hosted in partnership with END RHD, an alliance of many organisations focused on ending RHD.
A family from Maningrida with three children who have RHD, health experts from across the Top End and national Indigenous leaders including Pat Turner, CEO of NACCHO, and leading researchers including Professor Jonathan Carapetis directly addressed political leaders and other key stakeholders to tell the story of their fight against rheumatic heart disease. The rapt audience listened as those affected most were given a voice at Parliament House. It was a powerful message that secured a commitment from both parties to eliminate RHD. “All the right people were in the room,” Georgina recalls.
The following February, the Coalition government promised $35 million to accelerate medical research for a RHD vaccine (The Snow Foundation had committed to $400,000 over four years for the RHD vaccine). In April, only weeks before the Federal election, Labor committed $33 million to community-led prevention and treatment of RHD if it won government.
The re-election of the Coalition does not signify an end to ongoing important conversations with politicians, nor support to community-led solutions like Maningrida. “Communities are calling for comprehensive health care on the ground,” Georgina explains. “We’ll still keep seed-funding solutions led by communities, work with the politicians and seek funding for these solutions. It takes many to create change, but we have seen it is possible.”
Like many, Georgina is thrilled with the appointment of Minister Ken Wyatt, the first Indigenous politician to hold the portfolio of Minister for Indigenous Australians. The Snow Foundation and other partners have been working with Minister Wyatt for some time on the roadmap to end RHD, which he has made a priority. “There’s huge momentum behind this and we will continue working with him, others in government, all political parties and partners END RHD, Take Heart, RHD Australia, NT Cardiac, BUPA, clinicians and communities,” Georgina says. “It’s a good example of how philanthropy can add value by being flexible, independent and bring groups together to focus on the goal of achieving political commitment together.”