House debates

Thursday, 25 March 2021

Questions without Notice

Maeve's Law, Mackenzie's Mission

3:05 pm

Photo of Katie AllenKatie Allen (Higgins, Liberal Party) Share this | | Hansard source

My question is to the Minister for Health and Aged Care. Will the minister please outline to the House how the Morrison government is continuing to provide hope and support to Australian families battling medical conditions through initiatives like Mackenzie's Mission and Maeve's law?

Photo of Greg HuntGreg Hunt (Flinders, Liberal Party, Minister for Health and Aged Care) Share this | | Hansard source

I particularly want to thank the member for Higgins for her work prior to coming to this place as a nationally leading paediatric researcher and clinician. Maeve's law was introduced to this parliament yesterday. I had the privilege of doing that on behalf not just of the government but of all members. It is a law for mitochondrial donation. It's a groundbreaking law. It's a matter about which the Prime Minister has a deep personal passion, as does the member for McMahon. It crosses all boundaries. It's named after a little girl from my electorate, Maeve Hood. Maeve is five years old. She's one of those children born every week—56 children per year, more than one a week—with very serious forms of mitochondrial disease. That means they are likely to face a degenerative condition as organs and respiratory processes begin to fail. Very few who have that condition make it past the age of five. Maeve is five years old, and her parents, Joel and Sarah, have said that every day is a blessing.

This law, if passed by the House and the Senate, will open up the prospect of real hope and real change for these families—that, with mitochondrial donation, we will have the ability to bring these children into the world without the risk of mitochondrial disease. Their lives will be transformed. Their families' lives will be transformed. We're doing this at the same time as we've been battling COVID but going ahead with all the other important things. There couldn't be a more important law and there couldn't be a more important change in so many ways.

At the same time, we're progressing with Mackenzie's Mission. Many of you will remember that little Mackenzie Casella lost her battle at seven months and 11 days with spinal muscular atrophy, the most agonising and debilitating of conditions. In her honour we named Mackenzie's Mission, and the Prime Minister, when he was the Treasurer, announced funding of $20 million for thousands and thousands of families to have access to carrier screening, which would then allow them, if they were carrying up to now 1,300 different genetic conditions, to seek IVF. That's now occurring, and thousands of families are enrolled in Mackenzie's Mission.

Mackenzie's parents, Jonny and Rachael, have had their own struggle to have a second child. They've been through IVF and been through hell. But I am absolutely privileged to announce that last Friday little Mackenzie had a brother born. Whilst Mackenzie is no longer with us, Isaac Casella has been born. Isaac's grandfather is Ross, who works in this parliament. It is a tribute to the determination of their family, a tribute to medical science and a tribute to this program that we have in Australia this little boy, Isaac Casella.