PRIVATE MEMBERS BILL: Spinal Muscular Atrophy

Deputy Speaker, today I rise to move a motion for 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 will embark on this journey in the future.

Spinal Muscular Atrophy, also known as SMA sadly affects one in 10,000 births in Australia.

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.

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.

Deputy Speaker, 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.

Learning of their story, I had the privilege of working with Rachael and Jonathan to bring SMA 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. It was a core project as part of the $500 million Australian Genomics Health Futures Mission.

Next Friday, the 22nd of October marks the anniversary of little Mackenzie’s life.

Her story and legacy will forever leave a mark on the fight for more lifesaving SMA testing.

My heartfelt condolences go out to the Casella family, for the little girl they miss dearly.

Deputy Speaker, our Government has remained committed to supporting babies with this horrible disease by introducing lifesaving measures.

During SMA awareness month, which fell during August, our Government listed Evrysdi on the PBS.

This medication has meant 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 specialists’ hospitals.

Deputy Speaker, as a parent, all you want is protect your child from pain and suffering.

Treatment options just like Evrysdi are making sure new families can enjoy one of the happiest times of their lives as they welcome their little one into the world.

It means 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.

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 baby, Oakley.

Just last week, Oakley celebrated her 1st 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 8 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 I have ever met.

Kate and Grant Gough have shown Oakley the strongest and purest form of love.

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.

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 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.

To provide some context around why this is so alarming, when a condition is nominated for inclusion in the screening programs and if the Standing Committee on Screening agrees with a recommendation for further assessment, an initial review is conducted.

At the completion of the initial review, the standing committee determines whether the condition should be reviewed in more detail.

In this case, the Standing Committee on Screening conducted an initial review of the inclusion of SMA prior to their disbanding and determined that no further action was necessary.

In fact, they stated that in light of the successful pilots on New South Wales and the ACT, states Australia wide are encouraged to implement this screening.

Deputy Speaker, I’ve asked the Queensland State Government on multiple occasions why they haven’t moved based on this guidance.

They have stated that because the Standing Committee has since been disbanded, it has created ‘a grey area for them to progress.’

But Deputy Speaker, this response leaves me dumbfounded because the advice of the Standing Committee to every state couldn’t be clearer.

They recognise the value in the testing and the ability for it to save the lives of Australian families and are encouraging states to implement screening.

It’s that simple.

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, we cannot stand by and risk the health and lives of newborns for generations to come when there are effective screening options available.

Family is everything and I hear the overwhelming calls of Queensland families for the State Government to take urgent action, but it just feels like they are making excuse after excuse as to why they can’t move forward.

These families aren’t just fighting for this testing for themselves, they are doing it for the next family so they don’t have to endure the same suffering.

Today I am speaking up for all 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.

We’ve heard some of the testimonies today, of families who have put their heart and soul into spreading awareness of SMA and are dealing with the heartache of the Queensland State Government sitting idle for this long.

Sitting idle when testing exists Deputy Speaker!

Now, 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 pain of losing a child to this disease and no child should be disadvantaged based on where they are born in this country.

It simply isn’t the Australian way.

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