In the lead into the federal election, HeartKids has urged the government and Opposition to pledge funding for four priority areas to reduce the impact of childhood-onset heart disease (CoHD) on 1,000,000 Australians, among which Indigenous children and youth are over-represented.
Four young lives are lost every week to childhood-onset heart disease which places a significant burden on an estimated 250,000 Australian children, teens and adults and a larger number of family members, with an estimated 1,000,000 Australians touched by CoHD.
For those living in regional and remote communities, the burden is even more severe – they make up over 40 per cent of the population who travel more than 200km to access cardiac care. Indigenous people in these remote and regional communities are 60 times more likely to be affected by rheumatic heart disease than the general national population.
On Thursday, HeartKids welcomed the recent budget commitment to the detection, monitoring, and management of RHD but noted there is "still much to do" to support Australians who live with other forms of CoHD, which is the leading cause of death of children under 12 months in Australia.
HeartKids is a charity which has worked for 40 years providing lifelong support, resources, and advocacy for the 250,000 people impacted by childhood-onset heart disease.
The charity's chief executive Marcus Sandmann said childhood heart conditions touch one million Australians, with the total economic impact associated with childhood-onset heart disease estimated at $2.292 billion dollars per annum.
"This is a serious economic impact that a relatively small investment can reduce," he said.
HeartKids' four priority areas that make up the funding request include:
- Accessible support and connections for all Australians: $3.5million over three years to enhance support and education for those with CoHD by developing accessible resources, mental health services, peer support programs, early childhood intervention programs and professional training, including addressing the unique needs of remote and rural communities;
- Create community champions – Young Hearts Peer Mentorship Program: $1million over three years to invest in the long-term health of young people with CoHD by expanding our Teen Transition and Young Adult Program. This initiative promotes peer connection, mentorship, and tailored education, empowering young people to remain engaged in vital ongoing cardiac care and fostering better health outcomes. Due to limited funding, HeartKids life-changing Teen Camps—run for over 20 years—are currently on hold, leaving young people without vital opportunities for connection, confidence building, and support;
- Reduce the impact and incidence of RHD in Aboriginal and Torres Strait Islander communities: $2million over three years to build on and compliment current investment, empowering Aboriginal communities in reducing acute rheumatic fever and rheumatic heart disease, focusing on collaborative solutions, and culturally tailored resources to improve health outcomes. Without this kind of intervention, it is projected that by 2031 there will be an additional 1600 cases of RHD and up to 663 Australians may die; and
- Support excellence in care: $1million over three years to support implementing and embedding the Australian National Standards of Care for Childhood-onset Heart Disease (2024) to ensure equitable care for those with childhood-onset heart disease. Efforts include developing clinical guidelines, coordinating a detailed economic impact study, and measuring implementation outcomes.
Mr Sandmann said investment in the four priority areas aligns with the national commitment to improving the physical and mental health of Australians, reflected in the world-first 'Australian National Standards of Care for Childhood-onset Heart Disease'.
"The funding will also help address the National Agreement on Closing the Gap principals, which are increasingly falling short of their goals," he said.
