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Since 2011 we have been working with Aboriginal and Torres Strait Islander communities and other significant stakeholders and partners on rheumatic heart disease (RHD) and crusted scabies to help bring an end to these preventable diseases that can lead to death. RHD starts with a sore throat or skin sore, caused by Strep A bacteria and if untreated can lead to heart failure, disability and death. Treatment requires penicillin injections taken every month on time, for about 10+ years. In severe cases, open-heart surgery is needed. We continue to focus on supporting community-led solutions and bringing RHD to public attention.

Supported Since


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.