Hope for Families with Mito
The Senate Community Affairs Legislation Committee recently undertook an Inquiry into the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021.
Liberal, National and Labor MPs and Senators will be allowed a conscience vote on the Bill which is expected in the coming months. To become law, the Bill needs to pass both the House of Representatives and the Senate with a majority of votes.
On 11 May 2021 the Australian Government announced a commitment of $4.4 million over 4 years (and a total of $10.3 million over 10 years) from 2021-2022 to the staged implementation of mitochondrial donation in research and clinical settings in Australia.
The investment commitment announced in the 2021-22 Federal Budget follows the introduction of the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 into the Parliament in March this year which paves the way for legalising mitochondrial donation in Australia.
When introducing the Bill into Parliament, Health Minister Greg Hunt made a heartfelt speech and acknowledged five-year-old Maeve Hood who lives with mito and after whom the Bill has been named. You can read more here.
We are encouraged by Prime Minister Scott Morrison's impassioned public endorsements throughout the process. Read more here.
We thank all of the mito community, the general public and the medical and research community who have contributed to the public consultation process and shared their views.
Significant interest continues to be generated in the media and we are grateful to all of the mito families that have been willing to openly share their personal stories. This is an enormous help to build awareness and support.
You can still help the process by engaging your local MP and sharing why you feel mitochondrial donation is important. Please call our office on 1300 977 180 and we can help you to make a difference.
What is mitochondrial disease?
Mitochondrial disease (mito) is a debilitating genetic disorder that robs the body’s cells of energy, causing multiple organ dysfunction or failure.
One Australian baby is born every week that will develop a severely disabling form of mito. Sadly, most children diagnosed with mito die in the first five years of life.
An estimated one in 200 people, or 120,000 Australians, carry the genetic change that puts them at risk of developing mito, or passing it on to their children.
What is mitochondrial donation?
Mitochondrial donation is an IVF-based technique with the potential to prevent mitochondrial disease (mito) in the next generation of Australian children.
Mitochondrial donation involves removing the nuclear DNA from a patient’s egg containing faulty mitochondria and inserting it into a healthy donor egg, which has had its nuclear DNA removed. This can be done before the egg is fertilised (maternal spindle transfer) or post fertilisation (pronuclear transfer). The fertilised egg is transferred into the mother exactly as per current IVF practice.
As the nuclear DNA is retained, the unique genetic information (that makes us who we are and determines what we look like) is passed on from mother to child, but the mitochondrial defects are not.
While mitochondrial donation is legal in the UK, it is not yet legal in Australia.
Facilitated by the NHMRC (National Health and Medical Research Council) on behalf of the Australian government, public consultation was open from September til 29 November 2019 to seek community views on the possible introduction of mitochondrial donation into Australian clinical practice.
What impact would mitochondrial donation have?
Legalising mitochondrial donation would allow impacted Australians to have genetically related children without the risk of them inheriting mitochondrial DNA defects which will drastically limit their life.
An estimated 56 babies born each year in Australia could potentially be saved from inheriting mitochondrial disease.
Aside from the devastating physical and emotional impact on patients and their families, many patients have repeated and prolonged hospital visits, are unable to work and may need full time care. By protecting the next generation from mitochondrial disease, mitochondrial donation would have positive economic impact by removing this reliance on community, healthcare and social services systems.
These stories highlight the real impact on real Australians:
Maeve's Law is named after five-year-old Maeve who lives with Leigh syndrome. Her parents are proud that her life will have even more meaning by helping to prevent other Australian families from passing mito onto their children.
Bethany sees the impact of mito as her sister lives with a type of mitochondrial disease called MERRF syndrome (Myoclonic Epilepsy with Ragged Red Fibres). Bethany hopes that with mitochondrial donation, she can have a family free of this horrible genetic condition.
Shelley had never heard of mitochondrial disease until 3 years ago - when her mother experienced a rapid decline in health.
The Beard Family
In May 1997 everything changed for the Beard family when their daughter, Pippa, woke up in severe pain, unable to move.
Rhonda was 32 years old when she learnt her family was living under the shadow of mito.
Pam was diagnosed with MELAS, a maternally inherited form of mito, in her mid-forties.