Jordon Steele-John (WA, Australian Greens) Share this | Hansard source

Mitochondrial diseases are significant, life-limiting, serious diseases. In Australia each year around 56 children are born with mitochondrial diseases. These diseases develop as a result of genetic faults within the DNA of our cells' mitochondria—parts of our cells that provide the very power for the body's cells. When a fault in the mitochondria is transferred from the parent's egg to a child, there is a likelihood that the child will be born with mitochondrial disease.

The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 moves us closer to granting people the ability to make a choice when they are considering conceiving a child. This choice enables a medical procedure that would allow people to decide not to pass this genetic abnormality on to their child. Passing Maeve's Law through the Senate will allow parents with a high likelihood of having a child who will develop mitochondrial disease to be a step closer to choosing to undergo a procedure to replace the mitochondria that have a genetic abnormality with mitochondria from a donor egg.

After careful consideration, I have decided that I will be supporting this legislation. I have heard firsthand the experiences of families that have journeyed with the impact of mitochondrial disease, and I've had firsthand experience of children born with this disease too. I emphasise to the Senate that it is a significant, multisystemic and progressive disease. It can impact your heart, your muscles, your brain and much, much more. It leads to multiple-organ failure and can be deeply unpredictable in its nature. Indeed, the average life expectancy is between three and 12. It is clear from the evidence that has been presented to the multiple inquiries that have played an integral part in pulling together this piece of legislation that this is, without a doubt, a devastating, life-threatening disease.

I acknowledge that this bill as written commences with a stage 1, defined as a research and clinical trial phase. It is anticipated that this stage will take around 10 years. In speaking to parents, I have found it clear that, while there is hope in the passage of this bill, it is in its nature bittersweet for those who are wanting to reduce the likelihood of transfer now. This is especially true because mitochondrial donation has been legalised in the United Kingdom since 2015, with the first donation procedures occurring in 2018. For this UK example, assessments were completed on parents carrying mutations on a gene that would cause a rare mitochondrial disease called MERRF syndrome. This syndrome can be devastating and neurodegenerative in its nature. It is a disorder that worsens over time, often resulting in early death after the person loses muscle control and experiences dementia. Examples like this are exactly why we must commence making this procedure available to those who need it as soon as it is safe to do so.

We also need to ensure that funding for rare diseases continues to be made available. The Greens support ensuring that people with rare conditions, including mitochondrial diseases, are provided with wraparound healthcare services—for the person with the disease, their family and their support network. I call on the government to prioritise funding for research, including resourcing organisations that are doing much of the heavy lifting in this area, particularly the Mito Foundation. I am proud, in making this speech tonight, to be wearing a pin in solidarity with the foundation.

I will close by thanking the many people who have campaigned for and enabled this change. Getting to this point has been many years in the making. Those passionate about this matter participated in the 2018 inquiry into the science of mitochondrial donation, the National Health and Medical Research Council community consultation in 2019-20, and the Department of Health process early in 2021. When supporting someone through a significant illness or experiencing one ourselves, it can feel as though change is slow and hard to come by. Today is one of those historic moments when the community and its collective voice have been heard by people in this place and we get the opportunity to take a major step forward together.