Tuesday, 31 August 2021
Spinal Muscular Atrophy
I rise tonight to speak on an extremely important matter and one that is very close to my heart. August is Spinal Muscular Atrophy—commonly known as SMA—Awareness Month. Sadly, one in 10,000 births in Australia are affected by SMA. With no cure, this disease is the No. 1 genetic cause of death for babies under two in Australia.
I first became aware of SMA through the story of baby Mackenzie in 2018. At just 10 weeks old, little Mackenzie was diagnosed with SMA, sadly passing away at just seven months old. Mackenzie's parents, Rachael and Jonathan Casella, have made it their mission to shine a light on this disease. Learning of their story, I had the privilege of working with Rachael and Jonathan to bring it to the attention of Minister Hunt. Their hard work resulted in the delivery of a $20 million study into reproductive genetic carrier screening, called Mackenzie's Mission, in the 2018 budget.
Our government has remained committed to supporting SMA patients with more lifesaving measures to support babies with this horrible disease. In fact, this month, on 1 August, our government listed Evrysdi on the PBS. This medication means families living with SMA now have access to less invasive treatment options. It also means these families may experience a reduction in visits to specialist hospitals. Childbirth, and welcoming your little one into the world, is meant to be one of the happiest moments in a parent's life, a time when spending days, weeks and sleepless nights at the hospital shouldn't be the case and a time when a debilitating disease like SMA shouldn't be taking the place of precious family moments. I want to thank the Morrison government for this listing.
I am a strong advocate for bringing awareness to SMA. There are families in my electorate of Bonner currently battling this disease, just like Kate and Grant Gough and their beautiful six-month-old baby, Oakley. I first met with the Gough family last year and have been working with them to bring awareness to SMA in Queensland. It has been a long and challenging journey for baby Oakley after being diagnosed at just eight weeks old. Baby Oakley has recently been able to access Zolgensma, a life-changing gene therapy drug to treat babies with SMA. After just two weeks of accessing this drug, Oakley rolled over for the first time. She lifted her head and scored 100 per cent in her physio assessment. I'm happy to report that she is improving every day, but that doesn't mean life will be easy. Had Oakley been screened for SMA as part of the Newborn Bloodspot Screening program, her quality of life may have been completely different to what it is today. And it is incomprehensible that, had Oakley been born in a different state, that too may have meant her quality of life would be completely different today, a disadvantage which should not be happening in this country.
Today I also rise to bring attention to the lack of action from the Queensland state government in including a screening for SMA as part of the NBS program. Newborns in New South Wales and the ACT are already being screened for SMA as part of a pilot NBS program. Just last month, Western Australia signed on too. Queensland is now one of the few remaining states left to include SMA as part of this program. Early detection of SMA can slow the rapid decline in the health of the child and give them the best chance at a healthy life.
I hear the overwhelming calls from Queensland families for the state government to take action. Today, I am speaking up for these families. I recently had two more precious babies who are battling SMA in my local area brought to my attention. They are just a couple of months old. How many more children, grandchildren, siblings and loved ones must endure this unforgiving disease when it could have been prevented? How many more babies will fall victim to the lack of life-saving testing in the state of Queensland? I understand rolling out testing like this can't be done overnight, but, at approximately $10 per test, there is no reason why it should not be added. No family should have to endure the heartbreak of losing a child to this disease, and no child should be disadvantaged based on where they are born.