HeartKids ask Government to pledge funding for life-saving programs that support childhood-onset heart disease

Heartkids

In the lead into the federal election, HeartKids is asking the current 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.

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 bigger – they make up over 40% of the population who travel more than 200km to access cardiac care. For Indigenous Australians in these remote and regional communities, they are 60 times more likely to be affected by rheumatic heart disease (RHD).

HeartKids welcomes the recent budget commitment to the detection, monitoring, and management of RHD. However, 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.

“Childhood heart conditions touch one million Australians with the total economic burden 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,” said Marcus Sandmann, CEO of Heartkids.

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 complement 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.

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.

“Investment in these four priority areas aligns with the nations 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,” said Marcus.

About childhood-onset heart disease

Childhood-onset heart disease is a lifelong condition that often encompasses periods of fluctuating health, periods of developmental, educational, relational and occupational transition, and periods of uncertainty, medical decision-making, information processing, adversity and adjustment.

Key metrics

Four young lives are lost every week.
Childhood-onset heart disease (CoHD) places a significant burden on an estimated 250,000 Australian children, teens and adults and a larger number of family members and carers (prevalence based on known incidence of CHD, AIHW, 2019), with an estimated 1,000,000 Australians touched by CoHD.
The total economic burden associated with CoHD is estimated at $2.292 billion dollars per annum, including an approximate GDP loss of $12.89 million annually (Sapere, 2024).
People with CoHD are at a greater risk of neurodevelopmental impairment and disability including developmental delay and other learning difficulties.
CoHD poses a substantial economic burden on people impacted by the conditions, Australia’s healthcare system, educational institutions, the workforce and the broader economy.

About HeartKids

HeartKids is the only Australian charity dedicated to providing lifelong support, resources, and advocacy for the 250,000 people impacted by childhood-onset heart disease (CoHD). HeartKids provide connection and care informed by lived-experience to ensure no one faces this journey alone.

For over 40 years, HeartKids has provided much-needed quality services, support and solutions to more than 250,000 Australian children, teenagers and adults impacted by CoHD.

For more information or to speak to members of the Heartkids community to share their stories

please visit https://www.heartkids.org.au/

-ends-

For media enquiries on behalf of HeartKids, please contact
Progressive PR & Communications
03 9696 6417
Darren Saffin / Jodie Artis
0411 089 209 / 0414 699 186
[email protected] / [email protected]

Key Facts:

About us:

About HeartKids

For over 40 years, HeartKids has provided much-needed quality services, support and solutions to more than 250,000 Australian children, teenagers and adults impacted by CoHD.

For more information or to speak to members of the Heartkids community to share their stories

please visit https://www.heartkids.org.au/

Contact details: