RHDAustralia welcomes the launch of the RHD Endgame Strategy – a blueprint for eliminating rheumatic heart disease in Australia by 2031.

The RHD Endgame Strategy is the result of five years of collaborative research by leading infectious diseases specialists paired with the knowledge and experience of Aboriginal and Torres Strait Islander leaders across the country. It is based on recommendations that are feasible, equitable for all people, acceptable to Aboriginal and Torres Strait Islander communities, and likely to have an impact. 

The Strategy was produced by the End Rheumatic Heart Disease Centre of Research Excellence (END RHD CRE) which is based at Perth’s Telethon Kids Institute, with support from 25 leading health and research organisations – including the National Aboriginal Community Controlled Health Organisation (NACCHO) – the Endgame Strategy Report clearly sets out the steps needed to eliminate this disease in Australia, with a focus on five priority action areas:

• Aboriginal Leadership: resourcing an Aboriginal and Torres Strait Islander-led National Implementation Unit to coordinate RHD elimination efforts across Australia;
• Community-based programs: funding communities to develop programs to eliminate RHD which are locally relevant and culturally appropriate;
• Healthy Environments: tackling the primordial causes of RHD by guaranteeing all communities have healthy housing and environments;
• Early prevention: establishing comprehensive skin and throat programs in high risk communities; and
• Care and Support: optimising the health and wellbeing of people living with ARF and RHD and their families.

World-leading RHD expert and senior author of the Endgame Strategy Professor Jonathan Carapetis AM, said the Strategy’s release marked the first time a comprehensive, evidence base had been developed to demonstrate how this could be done.

“With the release of this Endgame Strategy we now have the blueprint outlining exactly what needs to happen to both prevent people developing ARF and RHD, and improve the quality of life for people already living with the disease,” Professor Carapetis said.

“Rheumatic heart disease is rare among non-Indigenous people, yet Aboriginal and Torres Strait Islander people have some of the highest rates of the disease in the world. This is a disease that is usually only seen in developing countries and its persistence in Australia is an ongoing injustice.

“At present, more than 5000 Aboriginal and Torres Strait Islander people are living with the disease or its precursor, acute rheumatic fever. Without a strategy, this number will more than double within the next decade. 650 people will likely die and 1300 will need open heart surgery.

“We know, without any shadow of a doubt, that by implementing the Endgame Strategy, we can prevent the next generation of Aboriginal and Torres Strait Islander children and their families from bearing the physical and emotional scars of rheumatic heart disease.”

Professor Carapetis added that by addressing RHD, there would also be an impact on other diseases with similar risk factors, such as otitis media, trachoma and renal disease.

The Aboriginal Community Controlled Health Sector was heavily involved in developing the Strategy, with Ms Pat Turner AM, CEO of NACCHO and Lead Convenor of the Coalition of the Peaks, saying that tackling RHD was a priority for communities.

“Our people are telling us that they want to use research evidence to help choose community-driven solutions to tackle rheumatic heart disease,” Ms Turner said.

“Kids are coming off country for months at a time for surgery, people are dying before their time. We’ve got the community demand, Aboriginal and Torres Strait Islander leadership – and with the Endgame Strategy, a culturally appropriate and meaningful plan.

“What we need now is funding and commitment to actually do the work on the ground to make ending this disease possible.

“It really is unconscionable to let the next generation of our children develop this disease – to be subjected to heart surgery, a needle every month, and have their life expectancy limited by decades – when we know how to stop this.”

Professor Carapetis agreed, highlighting that without a catalytic investment, the Commonwealth Government was unlikely to meet its commitment to eliminate the disease by 2031.

“The Commonwealth Government has been open about their commitment to eliminating rheumatic heart disease within the next decade, so we hope that with the release of the Endgame Strategy, we now have the final piece of the puzzle needed to make this shared vision a reality,” Professor Carapetis said.

Link to the RHD Endgame Strategy: Technical Report and Snapshot documents