Since 2011, we have been dedicated to improving health outcomes for Aboriginal and Torres Strait Islander communities. Yet, they still experience some of the highest rates of rheumatic heart disease (RHD) globally.

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1. Our Strategy

From 2024 to 2030, we will continue our commitment to First Nations people and communities and pursue a holistic strategy supporting a First Nations-led, community-focused response to acute rheumatic fever (ARF) and rheumatic heart disease (RHD) in Australia.

Community Based

• Partnership with NACCHO: Collaboration with the peak national body for Aboriginal and Torres Strait Islander health to support Aboriginal and Torres Strait Islander leadership and communities in addressing RHD. Our funding has enabled their Our Hearts in Our Hands ARF and RHD Prevention Program to expand into more ACCHOs and their communities.
• Community-Based Programs: Increase long-term investment in our existing community-focused programs: Deadly Heart Trek, Champions4Change, Orange Sky Laundry, Children’s Ground, Goods Project – Greate Beds

Awareness and Advocacy

Culturally appropriate education, awareness and advocacy: RHD advocacy, Deadly Science, Take Heart, Champions4Change

Educational programs that foster future Aboriginal and Torres Strait Islander leaders, empowered to enact change for their communities.

Social Determinants

We support initiatives that address the underlying causes of RHD, such as overcrowded housing, poor access to hygiene, and systemic inequality. Our partners – Wilya Janta, Orange Sky Australia, Goods Project – Greate Beds and The Kids Research Institute – are leading culturally grounded, community-informed solutions that prioritise dignity, cultural governance, and long-term change.

Future Innovative Developments

We will enable leading groups – CSIRO, the Baker Heart and Diabetes Institute, and the Kids Research Institute – to pursue medical research aimed at improving how we diagnose and treat ARF and RHD within remote and rural First Nations communities.

2. Background & Methodology

Since 2011, Snow Foundation has worked towards Aboriginal and Torres Strait Islander health outcomes and recognises the urgent need to address rheumatic heart disease (RHD) in Australia.  Aboriginal and Torres Strait Islander communities continue to record some of the highest rates of RHD in the world [1], with prevalence found to be greater amongst women and children [2].

We continue to evaluate clinical and public health interventions through a broader framework aligned with the National Agreement on Closing the Gap and its four priority reforms. We are committed to supporting community-based and First Nations-designed programs that tackle the root social and environmental causes of RHD.

Successful implementation of our RHD Strategy will require a combination of First Nations leadership, whole-of-sector collaboration and action, and a significant increase in investment. Snow aims to partner with government and other funding bodies to realise this and welcomes further input from stakeholders as it looks towards a future where RHD is eliminated in Australia.

3. Key Learnings

We have been privileged to learn from communities and individuals who have generously shared their lived experiences. This has reinforced our commitment to support meaningful and lasting impact against Rheumatic Heart Disease (RHD), including adequate resourcing for Aboriginal Community Controlled Organisations (ACCHOs). This impact can only be achieved with:

• First Nations’ leadership and empowerment [3].
• Effective and culturally appropriate health services [4].
• Structural improvements necessary to eliminate RHD in Australia [5].

4. Consultation Process

We have conducted an extensive consultation process with Australian and global stakeholders to drive learnings and identify areas for expanded investment.  Our three core streams of focus included:

• Public Health Responses: Healthy environments and practices through community-based programs.
• Clinical Interventions: Early diagnosis and treatment to prevent the progression of Strep A to RHD.
• Vaccine Development: A safe and effective vaccine and its adoption through community readiness.

5.              Our Principles

We have developed the following principles through our consultation process and in response to priorities outlined across the National Agreement on Closing the Gap, the RHD Endgame Strategy, NACCHO’s Strategic Direction 2023-25, and Principles of the Deadly Heart Trek.

Principle	Actions	Rationale
First Nations Leadership and Empowerment	Prioritise and promote First Nations leadership across the RHD sector, including representation in governance structures.	Community-based programs designed and delivered by First Nations leaders facilitate culturally appropriate and sustainable solutions, enhancing trust and cooperation toward improved health and socioeconomic outcomes.
Community-Focused Approach	Design and implement programs that are deeply rooted in the needs and perspectives of First Nations communities, engaging with those that invite collaborative partnerships.	Emphasis on community ensures that programs are relevant, appropriate, and effective, while acknowledging First Nations perspectives borne out of systemic injustices that define our country’s history.
Holistic Approach to Disease Management	Address clinical needs alongside the environmental and social determinants of RHD, aligning with the National Agreement on Closing the Gap.	Recognising and responding to the underlying causes of RHD is essential for sustainable outcome improvements while beginning to mend a system that has failed generations of Aboriginal and Torres Strait Islander peoples.
Capacity Building through Education	Invest in educational training and resources, building greater capacity, knowledge, and ownership of RHD within communities.	Education enables communities to set self-determined priorities, allowing RHD programs to meet specific needs while delivering improved outcomes over the long term.
Genuine Collaboration and Partnerships	Foster strong partnerships with and amongst First Nations and non-First Nations organisations, promoting whole-of-sector collaboration and action against RHD.	Collaborative efforts enhance resource mobilisation, knowledge sharing, and coordinated action, ensuring RHD efforts remain unified and synergistic to amplify their impact for affected communities.
Advocacy and Policy Influence	Advocate for policies and funding to support First Nations-led solutions for RHD that are culturally appropriate and responsive to systemic inequities underpinning the disease.	Making certain that First Nations voices shape policy and funding decisions is central to effective RHD prevention and management, opening opportunities to address broader challenges communities face.
Evidence-Based and Culturally Safe Programs	Develop and implement interventions that are both evidence-based and culturally safe to deliver optimal outcomes for First Nations communities.	The long-term future of RHD outcomes will be determined by an ability to integrate new insights and perspectives, iteratively improving programs until RHD is eliminated in Australia.

 

References:

1. Roberts, K. et al. (2015) Rheumatic heart disease in Indigenous children in northern Australia: differences in prevalence and the challenges of screening.The Medical journal of Australia, 203(5). [Link]
2. Australian Institute of Health and Welfare. (2024) Acute Rheumatic Fever and Rheumatic Heart Disease in Australia, 2022. Canberra. [Link]
3. Carapetis, J. and Brown, A. (2020) Community leadership and empowerment are essential for eliminating rheumatic heart disease.The Medical Journal of Australia, 213(3). [Link]
4. Kerrigan, V. et al. (2021) A community-based program to reduce acute rheumatic fever and rheumatic heart disease in northern Australia.BMC Health Services Research, 21(1). [Link]
5. Wyber, R. et al. (2020) Ending rheumatic heart disease in Australia: the evidence for a new approach.The Medical Journal of Australia, 213(10). [Link]

Useful Links:

The RHD Endgame Strategy – the blueprint to end rheumatic heart disease in Australia by 2031

NACCHO: Acute Rheumatic Fever and Rheumatic Heart Disease resources

Australian Institute for Health and Welfare Acute Rheumatic Fever and Rheumatic Heart Disease data 2022

Take Heart: Deadly Heart film-led advocacy campaign (including video library)