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

I move:

That this House:

(1) acknowledges that the month of August is Spinal Muscular Atrophy Awareness Month;

(2) notes that:

(a) spinal muscular atrophy (SMA) is the number one genetic killer of infants under the age of two in Australia and one in thirty-five people are carriers of SMA; and

(b) the Health Chief Executives Forum has encouraged all states and territories to include SMA in their Newborn Screening Programs following the success of the pilot program in NSW/ACT;

(3) recognises that the Commonwealth Government has invested significantly in the space of genetic testing and SMA treatment due to our strong economic management; and

(4) calls on the remaining state and territory governments to implement SMA testing into their Newborn Bloodspot Program, following the advice from the Health Chief Executives Forum.

Today I rise to speak on a matter that is very close to my heart. I rise to be the voice of every newborn and family currently on their own journey with spinal muscular atrophy and for those who seek to embark on this journey in the future. Spinal muscular atrophy, also known as SMA, sadly affects one in 10,000 births in Australia, and, 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. Since then I have taken every opportunity to raise awareness around SMA and speak on this matter in the House, because fighting for the lives of newborns and the lives of Australians is a matter of urgency, especially when there are treatments available. Little Mackenzie was diagnosed with SMA at just 10 weeks old and, sadly, passed 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. On learning of their story, I had the privilege of working with Rachael and Jonathan to bring SMA to the attention of Minister Hunt and Minister Coleman. 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, and it was a core project as part of the $500 million Australian Genomics Health Futures Mission. Next Friday, 22 October, marks the anniversary of little Makenzie's life. Her story and legacy will forever leave a mark on the fight for more life-saving SMA treatments. My heartfelt condolences go out to the Casella family for the little girl that they miss so dearly.

Our government has remained committed to supporting babies with this horrible disease by introducing life-saving measures. During SMA Awareness Month, which fell during August, our government listed Evrysdi on the PBS. This medication has meant that families living with SMA now have access to less invasive treatment options. It has also meant these families may experience a reduction in visits to specialist hospitals. As a parent, all you want to do is protect your child from pain and suffering. Treatment options like Evrysdi are making sure that new families can enjoy one of the happiest times of their lives as they welcome their little one into the world. It means that they can make precious family moments that aren't tarnished by days, weeks or even months of sleepless nights at the hospital. It is giving and will give so many families hope at a time when it is needed most. I thank our government for this listing.

I'm a strong advocate for bringing awareness to SMA. There are families in my electorate of Bonner currently battling this disease, like locals Kate and Grant Gough and their beautiful baby Oakley. Just last week, Oakley celebrated her first birthday. 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 Oakley after being diagnosed at just eight weeks old, but to see how Oakley has grown and remained resilient during her first 12 months of life has truly been a privilege. She is one of the most precious and inspiring little fighters that I've ever met. Kate and Grant have shown Oakley the strongest and purest form of love. 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, lifted her head and scored 100 per cent in her physio assessment. She is now even able to enjoy sitting upright. 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 blood spot screening program, her quality of life might have been completely different today. It is incomprehensible that, had Oakley been born in a different state, that too might have meant a quality of life that would be completely different today. It is a disadvantage which should not exist in this country. Today, I also rise to bring attention to the lack of action from the Queensland state government on including as part of the NBS program a screening for SMA, which newborns in New South Wales and the ACT already receive. (Time expired)

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