The total lifetime cost incurred by those impacted with mitochondrial disease (mito), and by the social and healthcare systems, far outweighs the cost of mitochondrial donation.

Symptoms of mito can include temporary blindness, mitochondrial strokes, balance difficulties and digestive or eating difficulties, all requiring significant treatment and care. Patients with severe mitochondrial disease typically undergo a vast range of tests during the process of diagnosis and see multiple specialists due to the wide ranging symptoms across multiple organs. Extensive and costly medical treatments are typically required.

It is common for patients to experience multiple hospitalisations, including protracted stays in ICU. Repeated seizures, loss of motor control and extreme lack of energy can mean that people of all ages have to stop working and may need full time care, therefore impacting family and friends (who may also need to stop working to provide full-time care) and relying heavily on the healthcare and social services systems.

Mitochondrial donation incurs an incremental additional cost to standard IVF. This cost is substantially less than the lifetime costs associated with mito, building a compelling health economics case for mitochondrial donation.

The UK Health Department undertook an economic analysis of the health system and administrative costs of introducing mitochondrial donation versus the predicted health savings. This calculated a net benefit of GBP32 million per annum for mitochondrial donation if it enabled the births of just 20 healthy children per year. That estimate does not include savings from social services and by facilitating higher workforce participation of parents. View the full report here.

An American study estimated that each child with an inherited rare disease has a lifetime cost to the healthcare system of almost US$5M*. More details are in this article.

*Chong JX, Buckingham KJ, Jhangiani et al., The Genetic Basis of Mendelian Phenotypes: Discoveries, Challenges, and Opportunities. American journal of human genetics 2015;97:199-215.

Taking action to reduce the burden of mito

Research commissioned by Mito Foundation has revealed, for the first time, the true cost of mito in Australia. The cost to the Australian economy each year is estimated to be over $1 billion.

The findings in this research highlight the importance of the above advocacy priorities. We have summarised this research and what needs to be done to reduce the impact of mito here: Taking action on the preventable burden of mito.