5 MINUTE: SMA Awareness Month
Deputy Speaker, I rise to speak on an extremely important matter and one that is very close to my heart.
August is Spinal Muscular Atrophy awareness month, commonly known as SMA.
Sadly, one in 10,000 births in Australia are affected by SMA.
And Deputy Speaker, with no cure this disease is the number one 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.
Deputy Speaker, our Government has remained committed to supporting SMA patients with more life saving measures to support babies with this horrible disease.
In fact, this month on the 1st of 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 specialists’ hospitals.
Deputy Speaker, 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 place of precious family moments.
I thank the government for this listing.
Deputy Speaker, I am a strong advocate for bringing awareness to SMA.
There are families in my electorate of Bonner currently battling this disease, just like locals 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 8 weeks old.
Baby Oakley has recently been able to access Zolgensma, a lifechanging gene therapy drug to treat babies with SMA.
After just two weeks of accessing this drug, Oakley rolled over the for first time, lifted her head and scored 100% in her physio assessment.
I’m happy to report 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 Screen Program, her quality of life may be completely different to today.
And Deputy Speaker, it is incompressible that had Oakey been born in a different state, that too may have meant her quality of life would be completely different to 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 ACT are already being screened for SMA as part of a pilot NBS program.
And just last month Western Australia signed on.
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.
Deputy Speaker, I hear the overwhelming calls of Queensland families for the State Government to take urgent action.
And today I am speaking up for these families.
I’ve recently had two more precious babies in my local area brought to my attention who are battling SMA.
And at 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 Deputy Speaker.
How many more babies will fall victim to the lack of life saving testing in the state of Queensland.
Deputy Speaker, I understand rolling out testing like this can’t be done overnight.
But at approximately $10 per test there is no reason it shouldn’t 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’re born.