Ross Vasta (Bonner, Liberal Party) Share this | Hansard source

Today I rise to speak on behalf of my constituents Kate and Grant Gough and their six-month-old baby, Oakley. I recently met with this beautiful family, who shared with me the heartbreaking story of baby Oakley's spinal muscular atrophy diagnosis when just eight weeks old. Sadly, SMA is the leading genetic killer of infants under the age of two in Australia, with one in 35 Australians unknowingly carrying the gene. Had Oakley been screened for SMA as part of the newborn bloodspot screening and started treatment sooner, her quality of life might have been completely different today.

I first became aware of SMA in 2018, through baby Mackenzie. At just 10 weeks old, little Mackenzie was diagnosed with SMA. Sadly, she passed away at just seven months and 11 days old. I brought Mackenzie's story to the attention of Minister Hunt and Minister Coleman, and they took prompt action. This action resulted in the inclusion of a $20-million study into reproductive genetic carrier screening, called Mackenzie's Mission, in the May 2018 federal budget. I understand the minister had asked all states and territories to include screening for SMA in their newborn bloodspot screening programs. Trials for SMA through newborn bloodspot screening programs are currently only underway in New South Wales and the ACT. I ask those in the room today: what about newborns impacted by SMA in other parts of the country?

I want to emphasise that the results of these trials have been extremely encouraging. The medical community is overwhelmingly in agreement that the sooner the treatment begins, the better the long-term prognosis is for children with SMA. With that in mind, I'm calling on the Queensland state Labor government to consider the courageous families battling SMA, and those who will be in the future. Even AMA Queensland is asking for SMA to be included in the Queensland newborn bloodspot screening program. Our families do not have the time to wait for trials to conclude in New South Wales and the ACT before Queensland state Labor acts. With the cost-effectiveness of this test—approximately $10 per test—it's positive results thus far and the Morrison government's willingness to collaborate, I urge Queensland state Labor to include SMA in their newborn bloodspot screening program.

You have heard Oakley's and Mackenzie's stories today. As a father of two, there is nothing more important to me than family and their wellbeing. I am taking this opportunity today to fight for the quality of life of these babies. No family should endure the heartbreak of losing a child to this disease, and no child should be disadvantaged based on where they are born.

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