Research we commissioned has revealed, for the first time, the true cost of mitochondrial disease (mito) in Australia. The cost to the Australian economy each year is estimated to be over $1 billion.

We commissioned this research to inform and support our advocacy work. The findings of this research emphasise the economic importance of action to reduce the impact of mito. Being able to explain the economic impact of mito helps us get support from decision-makers and advocate for changes that will lead to a healthier mito community in Australia.

We have summarised this research and recommended ways to reduce the impact of mito here: Taking action on the preventable burden of mito.

The research

The research was conducted by The Centre for International Economics (CIE). Their study found that approximately 4,500 Australians live with symptoms of mito, including over 300 children. Additionally, over 120,000 Australians have a genetic risk factor for mito. They could be experiencing the early effects of mito without knowing they have the disease.

The total cost of mito to the Australian economy is over $1 billion each year.

Graphic demonstrating the total cost of mito in Australia in a puzzle piece circle. Text in centre reads ‘Total cost of mito per year $1.09 billion’. The circle is in quarters. Text and icons are: ‘Quality of life’ with heart icon, ‘Health care and NDIS’ with health cross icon, ‘Lost productivity’ with cog icon, ‘Out-of-pocket costs’ with stack of coins icon.

This includes:

  • The cost of early death: each year, 70 Australian adults and 10 children lose their lives due to mito.
  • The cost of reduced health: over 1,805 years of healthy life lost each year.
  • The cost of people who care for someone with mito not being able to work: over $34M each year.
  • The cost to our health system and disability systems: $94M and $40M respectively.
  • The costs paid directly by Australians with mito: over $30M paid out of pocket.

The research was informed by previous work with the mito community, workshops held with community members, and consultations with Australian experts. Thank you to the mito community members who participated and those who provided their stories to be used in The CIE's report. Read the full report, Preventable burden of mito in Australia, here.

Taking action

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Diagnose mito better

124,000 Australians have a genetic risk factor for mito. Diagnosing mito earlier could save $20 million each year.

Learn more about diagnosing mito. 

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Support prevention options for mito

We could save $3 million for every healthy baby born without mito. We must continue support for prevention options for mito.

Learn more about prevention options for mito.

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Improve health care and support

Improving health care and other support services can keep people with mito healthier for longer, improve their quality of life, reduce loneliness, and increase productivity.

Explore our support services. 

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Boost research in Australia to develop new treatments and cures for mito

Australia is a leader in diagnosing mito and is an ideal location for clinical trials.

See our research impact.

There's still a lot of work to do.

Help drive these changes and support our advocacy work by donating today.

The impact

We are meeting with Australian parliamentarians and other decision-makers to share this research and help them understand the wide-reaching impacts of mito.

The CIE's report also makes a valuable contribution to what is known about the combined impacts of mito on a diverse group of Australians. The data in the report will be helpful in assessing the cost-effectiveness of strategies to reduce the impacts of mito in Australia, including prevention, improved diagnosis, enhanced health care, new treatments, and other supports.