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End Rheumatic Heart Disease Centre of Research Excellence

RHD Endgame Strategy

The END RHD CRE focuses priority research projects that will help achieve the singular target of producing the Endgame Strategy.

Rheumatic heart disease (RHD) is preventable.

The collective experience of communities, clinicians, Aboriginal Community Controlled Health Organisations, government and non-government organisations, in addition to over 25 years of research, means the knowledge and evidence base now exists to eliminate rheumatic heart disease in Australia.

The Endgame Strategy brings together this experience, knowledge and evidence for the first time, presenting an opportunity for Australia to implement a comprehensive, long-term strategy to end RHD.

RHD disproportionately affects Aboriginal and Torres Strait Islander people. Currently, around 420 Aboriginal and Torres Strait Islander people have a diagnosed episode of acute rheumatic fever (ARF) each year, a rate 123 times higher than rates in non-Indigenous people. Of the more than 5,000 people living with RHD in Australia, 71% are Aboriginal and Torres Strait Islander people. This represents one of the highest per capita burdens of RHD in the world.

Without action, it is estimated that a further 8,667 Aboriginal and Torres Strait Islander people will develop ARF or RHD by 2031. Of these people, 1,370 will have severe RHD and 663 will die, with $273.4 million required to be spent on medical care. Aboriginal and Torres Strait Islander children are most at risk of developing the disease.

Ending RHD will not just eliminate the disease for the next generation of Aboriginal and Torres Strait Islander children – it will help to close the gap caused by other diseases of inequity.

Eliminating RHD means preventing new cases of disease. The Endgame Strategy outlines the best existing evidence-based strategies to prevent new cases of RHD in Australia, in line with the biomedical model of disease:

  • Structural and system considerations: Central to any disease-specific strategy is a well-resourced, culturally secure primary healthcare system. Local partnerships to support communities also require links to housing, education, meaningful employment and environmental health services.
  • Environmental, social and economic determinants: Action must be taken to address the environmental and socio-economic causes of Strep A infections leading to ARF and RHD, with investment in collaborative, community-led solutions.
  • Primary prevention: Strategies which improve the assessment and treatment of skin and throat infections will prevent ARF in people at high risk of the disease.
  • Secondary prevention: In order to prevent progression of ARF to RHD, strategies are needed to improve the early and accurate diagnosis of ARF and delivery of secondary prophylaxis.
  • Tertiary care: Australia has a moral imperative to provide high-quality medical and surgical management for people with existing RHD, preventing complications and improving quality of life

RHD Endgame Strategy: Evidence Briefs

5 Priority Areas for Implementation

Priority Action Areas

The Endgame Strategy has identified a range of strategies that demonstrate potential to put the elimination of RHD in Australia on track for 2031.

No single one of these strategies will eliminate RHD. Instead, a comprehensive approach, applying a number of strategies concurrently, is needed.

This will look different across communities and jurisdictions, reflecting the cultural, geographic and political context in which they operate. Experience and evidence make it clear that community-level action is crucial to eliminating RHD. Therefore, the Endgame Strategy proposes a holistic strategy to end RHD with Aboriginal and Torres Strait communities at the core, grounded in local decision-making and with supporting structures to ensure a nationally consistent approach.

Acknowledgements

The RHD Endgame Strategy is a product of collaboration between researchers, Aboriginal and Torres Strait Islander leaders, communities and people with lived experience.

The END RHD CRE investigators would like to thank the Aboriginal and Torres Strait Islander people who have shared their stories in the Endgame Strategy. We acknowledge that the figures outlined represent the loss of human life with profound impact and sadness for people, families, community and culture.

We thank all content experts who contributed their technical expertise, time and advice to the Endgame Strategy. In particular, we acknowledge the members of the END RHD Review Working Group, which comprised nominees from END RHD – the peak alliance leading work to eliminate RHD in Australia. Members of this working group provided invaluable insight, reviewing content for feasibility and acceptability, and including review from a cultural perspective.

The Kids Research Institute Australia acknowledges Aboriginal and Torres Strait Islander peoples as the Traditional Custodians of the land and waters of Australia, and the lands on which this report was produced. We also acknowledge the Nyoongar Wadjuk, Yawuru, Kariyarra and Kaurna Elders, their peoples and their land upon which the Institute is located, and seek their wisdom in our work to improve the health and development of all children.