FOR the first time, a study has revealed the true cost of mitochondrial disease (mito), which drains more than $1 billion from Australia's economy each year.
The Preventable burden of mitochondrial disease report, which was commissioned by the Mito Foundation, shines a light on the economic impact of the rare and debilitating disorder.
Approximately 4,500 Australians are affected by the disease, while an additional 124,000 carry a genetic risk factor for mito, and could be unknowingly experiencing its early effects.
According to the Mito Foundation CEO Sean Murray, the report is a massive step towards understanding the wider impact of the genetic disorder, which can help unlock 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," he explained.
"This research has shown that more than 80% 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."
Annually, Australia loses 10 children and 70 adults every year to mito, and those living with the condition miss out on a combined 1,805 years of better health.
"Improving how mito is diagnosed, ensuring access to prevention options and increasing research into new treatments are all part of the solution," Murray emphasised.
The Mito Foundation is urging the government to improve the health workforce's ability to recognise symptoms of mito, as well as remove barriers to genetic testing.
It also highlights the importance of growing a network of accessible Centres of Expertise in mito, and increasing in the number of clinical trials in Australia. JM
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