In a world first, the National Aboriginal Community Controlled Health Organisation (NACCHO) has partnered with the Australian Government to establish a community-led initiative to combat acute rheumatic fever (ARF) and rheumatic heart disease (RHD) in Aboriginal and Torres Strait Islander communities throughout Australia.

In an article published today in the Medical Journal of Australia, Ms Pat Turner, NACCHO’s CEO, and Dr Dawn Casey, NACCHO’s Deputy CEO, discuss how the partnership shifts power and decision-making to Aboriginal and Torres Strait Islander community control.

Ms Turner and Dr Casey note that unprecedented levels of ARF in Aboriginal children were reported in the Medical Journal of Australia over 40 years ago, and the implementation of a comprehensive prevention system at a community level are long overdue.

“Such a system is most effectively implemented through comprehensive community controlled primary health care firmly in the hands of Aboriginal and Torres Strait Islander communities,” they wrote.

“We know what needs to be done, and we know that it can be done.”

NACCHO has been instrumental in establishing the partnership, co-designing the national governance structure, appointing an RHD Expert Working Group, and co-chairing a national Joint Advisory Committee.

“NACCHO is now responsible for dispersing over $30 million in service enhancement grants to enable Aboriginal and Torres Strait Islander communities and their community-controlled health services to address their local priorities, building on their own strengths and assigning resources to strategies they know will work,” Ms Turner and Dr Casey wrote. 

More than fifteen Aboriginal Community Controlled Health Organisations (ACCHOs) have already secured funding to participate in the NACCHO program.

The initiative came about as a result of the Australian Government’s commitment to eradicate Acute Rheumatic Fever and Rheumatic Heart Disease in Australia by 2031.

World-first approach to eliminating rheumatic heart disease in Indigenous communities - Featured Image
Acute rheumatic fever is most commonly found in children (ChameleonsEye / Shutterstock).

What is ARF and RHD?
ARF begins as a group A streptococci infection of the throat or skin, and is most commonly found in children aged five to 14 years.

If left untreated or if repeated infections occur, an autoimmune inflammatory reaction can cause scarring of the heart valves, resulting in RHD.

Despite being preventable and largely eliminated from high income countries, Indigenous communities in Australia have some of the highest rates of RHD in the world.

More than 8 000 Aboriginal and Torres Strait Island people are living with ARF or RHD. Aboriginal and Torres Strait Islander Australians are diagnosed with RHD at a rate 15 times higher than the rate for all Australians.

ARF and RHD are entirely preventable conditions, and only occur in high income countries when the social and cultural determinants of health are not equitably addressed.

Many people living with RHD, including children, will require heart surgery. Lifelong medical check-ups are essential for every person living with RHD.

In 2020, the National Agreement on Closing the Gap, signed by all levels of government, recognised that Aboriginal and Torres Strait Islander communities are best placed to lead on the health services decisions which impact what and how services are delivered.

In 2021, NACCHO was funded to co-lead the Rheumatic Fever Strategy with the Australian Government.

Key to the new approach is community-led action that prioritises funding to the ACCHO sector to design and deliver on the ground activities supported by a local workforce.

It is estimated that the strategy will prevent 663 deaths and save the health care system $188 million.

Read the perspective in the Medical Journal of Australia