Katy Gallagher (ACT, Australian Labor Party, Shadow Minister for Finance) Share this | Hansard source

I rise to speak in support of the passage of the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. This bill marks one of those moments where this place can have a clear and significant impact on the personal lives of some Australian families. It's a reform that has been years in the making and it's a reform that can bring hope and relief to many. Maeve's Law is named in honour of little Maeve Hood, who at 18 months was diagnosed with Leigh syndrome, a severe mitochondrial disorder. The bill was named after Maeve because of the tireless work of her parents, Sarah and Joel, along with the Mito Foundation, who worked to raise awareness and build support for those in our community with mitochondrial disease. It is a testament to their efforts and tireless campaigning that this bill has made it to the Senate floor, and I really hope we will pass this bill as the other place did in the last sitting of 2021. I thank the Hood family, Sean Murray of the Mito Foundation, who has worked so hard explaining to MPs and senators why this bill is so important, and the many other families who have championed this issue.

Mitochondrial disease affects all communities in Australia. Just last November over 1,000 Canberrans participated in the 35-kilometre 'Bloody Long Walk' for the Mito Foundation. They walked for the many families who have felt the pain of losing loved ones to this dreadful disease. In preparing for this bill I spent time reading the stories of those Australians who have shared their lives and their stories in advocating for these laws. They are the stories of sons and daughters, mums and dads. And there's little Maeve, who is only five and who has done so much along with her parents to raise awareness of mitochondrial disorders. But there are so many more, and more than 30 stories appear on the mitochondrial website.

I read every single one of those stories in educating myself to get a full appreciation of why it is so important to pass this bill. Behind those names are the stories of babies, toddlers, young children, teenagers, young adults, middle-aged Australians and older Australians, all affected by mitochondrial disease. The stories are often difficult to read, and the generosity in sharing them, in the single hope that we will change the laws and help families, is the most unselfish of acts. The stories from mums and dads about losing their babies to this disease, written with such love and loss, were painful to read and almost impossible for me to comprehend. The photos that accompanied each story were of cheerful cherubic faces, children with wide smiles surrounded by families, and adults and parents—everyday Australians struck down out of the blue, at random and often with debilitating and life-limiting symptoms. The stories told were of not knowing what was happening to young babies as they started to show symptoms, of the misdiagnoses, of the testing, of the guilt and pain from learning that the condition is passed on from parent to child, and that you as the carrier of the faulty gene had caused this disease to occur in your babies, and of the uncertainty and fear that comes with caring for someone with mitochondrial disease.

Alastair was a Canberran who was diagnosed with mitochondrial myopathy in his late 60s. He suffered from poor hearing, loss of balance and extreme fatigue. Unfortunately, Alastair deteriorated quickly. He needed his wife, and eventually his son, to care for him before he passed away aged 74. Alastair told his son, 'Be careful having kids'—what a burden that must be to carry. These people and many others who have been touched by mitochondrial disease are the most powerful of advocates for the change that this law proposes.

This bill is an opportunity to take advantage of the advances in reproductive technology to avoid the heartache, pain and anguish of having a child with severe mitochondrial disease. It would amend existing legislation to make mitochondrial donation legal for research, training and human reproductive purposes, allowing families to have a biological child in a way that minimises the risk of transmitting mitochondrial disease. Other senators have gone through the detail of this bill in their contributions, so I won't repeat that other than to say that we know around 56 children are born with the disease each year—approximately one child a week. This bill can reduce that number, and on those grounds alone I support this bill.

I acknowledge that the bill does raise concerns for some senators. On votes of conscience, when the colours of party are stripped away, we stand here as individuals. We all bring our own perspective and our own life experience to this chamber. I come to this vote as someone who spent years working in the disability sector. I come to this vote as someone who spent eight years as a minister for health. I come to this vote as someone who has experienced the death of loved ones and the deep grief that follows. But, mostly, I come to this vote as a mum of three amazing children.

Debate interrupted.

Senate adjourned at 22 : 00