Wednesday, 30 March 2022
Questions without Notice
I want to thank the member for Robertson, who’s been a great advocate of support for rare cancers and rare diseases. Indeed, there was $750 million in the budget last night for the 10-year Medical Research Future Fund plan focusing on rare cancers, rare diseases and clinical trials. In particular, in relation to spinal muscular atrophy, the House will be aware of the case of Rachael Casella and her beautiful baby, Mackenzie. Mackenzie was lost as a young child to SMA, an agonising condition. In response to that, the Prime Minister, in his earlier role as Treasurer, supported the creation of Mackenzie’s Mission. That mission provided genetic carrier screening to thousands of families.
Last night, this Treasurer, in this budget, made Mackenzie’s Mission permanent and universal for all Australian women to offer carrier screening for potential couples around Australia for cystic fibrosis, for fragile eggs and for spinal muscular atrophy to give parents the option of knowing whether they might be carriers and therefore to proceed to IVF. This will make a profound difference to families.
But there’s another family and another mother who’s had a huge impact on awareness of spinal muscular atrophy. In the chamber, with her hand up, is Julie Cini. Some years ago, Julie lost not just one child but two children, Montana and Zarlee, to SMA. She’s been a campaigner ever since. She campaigned for the listing of Spinraza, which this Prime Minister listed and which this Treasurer extended for treatment of SMA. Last night a medicine called Zolgensma was listed by the Treasurer. This medicine is now on the PBS. It would otherwise cost $2½ million, beyond the reach of virtually any family in Australia or around the world.
This medicine offers a potential near cure for SMA. For children under nine months, it means that they have a chance of a full life and a rich life, and that will be a legacy that is left not just by those who are on the benches here but by Julie and all those who have fought for Spinraza and Zolgensma at Mackenzie's Mission. These are the practical things that we do. That's what we're doing. Rachael and Mackenzie; and Julie, Montanna and Zarlee are the reason, they are the why. That is why and these are the people for whom we do what we do.