Community Action – The Deadly Heart Trek
The Deadly Heart Trek was established as an opportunity to listen, learn, educate, diagnose and treat Aboriginal and Torres Strait Islander communities across Australia affected by acute rheumatic fever (ARF) or rheumatic heart disease (RHD). The project is led by a dedicated group of experienced cardiac doctors, rheumatic heart disease nurses, local health workers, and Indigenous leaders who are committed to progressing the prevention of rheumatic heart disease.
Initially, a warm-up Trek took place in the Northern Territory in September 2021 with several communities who were highly enthusiastic to invite the team to visit. Dr Bo Remenyi led a local medical delivery team and visited nine communities; five in the Big River Region and four in the Barkly region.
Once COVID travel restrictions were lifted completely, we recommenced plans for the National Trek, with QLD the first priority in August 2022. Dr Robert Justo and Dr Ben Reeves co-led the two trek delivery teams starting in Thursday Island and visited five communities across the Cape and Torres Strait regions.
There are now plans for Central Australia in 2023.
The Trek is governed by a National Steering Committee, members: leading paediatric cardiologists, an Aboriginal cultural engagement lead, social justice Aboriginal lawyer, and The Snow Foundation. Both the delivery team and Steering Committee include Aboriginal and Torres Strait Islanders. Rigorous project management tools were used including a comprehensive risk matrix and checklists for pre, during and post the visits.
Key collaborators are: The Snow Foundation, RHDAustralia, Champions4Change, Take Heart Project, HeartKids, RHD Control Programs, Heart Foundation Australia NT Cardiac, Orange Sky, One Disease, QLD Children’s Hospital, Far North QLD Hospital Foundation.
RHD Medical Research
We also fund the development of a Streptococcal A vaccine to prevent RHD with Professor Michael Good AO, a National Health and Medical Research Council Senior Principal Fellow at Griffith University.
Awareness and Advocacy
The sequel to the 2015 Take Heart documentary film and advocacy project – Take Heart: Deadly Heart was released in 2022. The initial film drew national attention to this largely invisible disease.
In 2017 at the Close The Gap Parliamentary Friends Group meeting at Parliament House, we joined Penny from the top-end with Dr Bo Remenyi and the Take Heart team. Penny shared the severity of living with this disease, undertaking a decade of monthly penicillin injections.
In 2018 we increased our focus on raising awareness of RHD with political leaders and launched a marketing awareness campaign; billboards, social media and a television commercial.
We co-hosted a breakfast at Parliament House with a coalition of organisations working to end RHD. Aboriginal leaders, leading researchers and members from Maningrida directly addressed political leaders and key stakeholders. Both major parties confirmed their commitment to eliminate RHD.