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Medical Health Aged Care

Mitochondrial Disease Costing Australians $1 Billion Each Year

Mito Foundation 4 mins read





A groundbreaking new study has revealed for the first time the true cost of mitochondrial disease (mito), stripping more than $1 billion from Australia’s economy each year.  


Commissioned by the Mito Foundation, the first of its kind Preventable burden of mitochondrial disease report by the Centre for International Economics details the economic impact of the rare and debilitating genetic disorder that affects around 4,500 Australians.


There are around 124,000 Australians with a genetic risk factor for mito, who could be experiencing the early effects of the disease without knowing they have it.


Mito Foundation CEO Sean Murray said the report’s findings are a major step towards understanding the wider impact of mitochondrial disease, which can lead to better treatment and greater prevention.


“This report is a groundbreaking development in the fight against mitochondrial disease because for the first time we are able to see just how much it is costing Australians,” Mr Murray said.


“This research has shown that more than 80 per cent of the $1 billion cost of mito is due to the lost quality-of-life of those who either die from the disease or have to live with the pain and disability it causes. This severely impacts their ability to contribute to society in ways that most of us wouldn’t think twice about.


“The productivity cost of mito alone is $196 million, but we can reduce the impact. Improving how mito is diagnosed, ensuring access to prevention options and increasing research into new treatments are all part of the solution."


Each year 10 children and 70 adults lose their lives to mito in Australia, with those living with the condition being robbed of a combined 1,805 years of better health.


Emily Wells, a 26-year-old aged care nurse with mito, said the findings will come as no surprise to those who experience the effects of the disease daily.


“When I was finally diagnosed with mito I cried with relief. No one could pinpoint why I was so fatigued, why my white blood cells were high for months or why I would get pain in my legs. But after around seven years of pain and wondering what was wrong, I finally had a diagnosis that I could start to move forward from,” Emily said.


“Mito is very difficult to explain because it affects everyone differently. Even when I end up in hospital, many doctors don’t fully understand the disease.


“I love my job as an aged care nurse, but recently I had a flare-up in my nerves. Normally I would take a couple of days to rest and recuperate and then go back to work, but I’ve now been off work for around three months, which is hard on my workplace and also myself financially.


“They always say listen to your body, because I knew something was wrong, and there are Australians who are probably having a similar experience right now. I want everyone to be aware of mito and its impacts so that we have earlier diagnosis and a better understanding of how to manage the disease.”


Mito Foundation is calling on the government, researchers and health professionals to work with the mito community to do the following:

  • Remove barriers to genetic testing, including banning the use of genetic test results by life insurance companies.
  • Improve the health workforce’s ability to recognise symptoms of mito, including encouraging GPs to complete the Maybe It’s Mito training.
  • Continue to support the mitochondrial donation program, mitoHOPE.
  • Provide funding for the expansion of reproductive genetic carrier screening to improve access to testing, counselling, and reproductive support services.
  • Grow a network of accessible Centres of Expertise in mito to provide multi-disciplinary care.
  • Secure sustainable funding of Mito Foundation’s support services.
  • Support an increase in the number of clinical trials in Australia by funding further targeted research.


Mito Foundation is the only organisation in Australia dedicated to supporting people affected by mito.


Its work ranges from raising funds for pioneering research to providing support services for patients and their families.


To donate to Mito Foundation, or for more information on the impact of mito, visit




Media contact: Jack Douglas | 0450 115 005



  • $1.09 billion cost to the Australian economy each year.
  • $435 million in cost of premature death each year.
  • $424 million in cost of lost quality-of-life each year.
  • $196 million in lost productivity due to mito caused ill-health, deaths and absenteeism.
  • Around 80 lives lost to mito, and a combined 1,805 years of health life lost per year.
  • $93 million health care costs each year.
  • $40 million cost to the NDIS each year.
  • In 2022, there were 345 children and 4,383 adults living with mito who were cared for by 2,613 carers, including family members.
  • Prevention of mito is possible. This could reduce the annual cost by approximately $60 million each year.
  • Earlier diagnosis can save $20 million each year.
  • Genomic testing for children could save up to $9,000 per person relative to conventional care costs.



  • Mitochondrial disease is a group of genetic disorders that affect mitochondria which are responsible for producing energy in cells. Mitochondria are responsible for creating more than 90% of the energy needed to sustain life and support growth. ln mito, mitochondria cannot efficiently turn sugar and oxygen into energy, which can cause cells to malfunction. This can cause disruption to one or more body organs, potentially leading to organ failure. The disease is debilitating and often terminal.

  • Mitochondrial disease affects one in 4,300 people. There are no cures and few effective treatments.


  • Mitochondrial disorders are the most common group of inherited metabolic disorders. There are currently more than 350 different types of mito that have been identified through genetic testing. It is highly complex and can affect anyone at any age.


  • One child will develop a life-threatening form of mitochondrial disease every week in Australia, which is around 50 kids a year. Most Australian children diagnosed with mitochondrial disease die in the first five years of their life.


  • 1 in 200 people, or more than 120,000 Australians, have genetic changes that put them at risk of developing mitochondrial disease. We do not yet know how many of these people are symptomatic but undiagnosed or misdiagnosed. They may be experiencing symptoms including dementia (including childhood dementia), diabetes, deafness or seizures during their lifetimes. Some are not yet symptomatic, and some are unknowingly at risk of passing the disease on to their children.


  • Mitochondrial disease impacts the productivity of people with disease and their carers through reduced workforce participation, productivity while at work, unplanned absences from work, and reduced educational attainment.




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