John Alexander (Bennelong, Liberal Party) Share this | Hansard source

One of the great things about representing Bennelong is representing Pill Hill at Macquarie Park. Modern medicines are incredible. Many of the conditions which were traumatic, debilitating or deadly for my parents' generation are now cured. No-one fears polio or smallpox anymore. We haven't heard of these in years. We can thank revolutions in medicine for this. Similarly, many of the diseases and conditions we have now will not plague future generations, and if we look closely we can see cures coming over the horizon right now. Many treatments that were death sentences within the last 10 years are now curable or at least manageable. We will die with these conditions, not of them.

Spinal muscular atrophy was a terrifying condition. It is a genetic condition that causes the degradation of muscles, leading to their atrophy over time. It was, as the motion said, the No. 1 genetic killer of infants under the age of two in Australia. But, with all due respect to my friend and colleague the member for Bonner, this motion has its tenses muddled. SMA was the biggest killer of infants, but it is now one of those conditions which we have the ability to consign to medical textbook history. We have done this in Australia through two things: testing and treatment. When one in 35 people carries the gene for SMA, testing is obviously imperative. The newborn blood-spot screening program has been a huge success in screening over 25 conditions in newborns. The ACT and New South Wales have recently run a pilot that added SMA testing to this program. This screened over 250,000 babies, and 21 had a genetic condition of SMA. Through the screening, those 21 babies are either on the PBS-listed treatment or accessing treatment through clinical trials, which we know has been life saving and has allowed them normal development. Since we know that the earlier you treat this condition to prevent the loss of function the better the health outcomes, this intervention will have massive implications for their futures. While adding things to the newborn blood-spot program is arranged at a state level, following these great results Western Australia has added SMA screening to its program, which is fantastic to see. I understand that the Minister for Health and Aged Care, the Hon. Greg Hunt MP, has written to all state and territory health ministers, urging them to consider the inclusion of SMA screening in their newborn blood-spot screening programs, and I hope this call will be answered across the nation.

Even recently, testing provided somewhat useless knowledge, as treatment remained elusive, but in June 2018 this changed, with the first-ever treatment for this devastating condition being listed on the PBS. This was Spinraza, and it is made by one of the companies on Pill Hill. The government invested in Biogen's drug, with $241 million to list Spinraza on the PBS for the treatment of patients under the age of 18 with types 1, 2, and 3A SMA, from 1 June 2018. The listing of Spinraza was expanded from 1 December 2020 to include treatment of children and infants under 36 months with presymptomatic SMA. Without PBS subsidy families would pay more than $367,000 a year for this treatment. Meanwhile, Roche's Evrysdi was listed on the PBS in 1 August 2021 for the treatment of patients with SMA types 1, 2 and 3A who are aged 18 or under at treatment initiation. Without PBS subsidy around 100 patients a year would be paying more than $123,000 for their treatments.

Behind these figures are real families with loved ones who now have a bright future. One such family lives locally to me in Willoughby, New South Wales. Matilda MacDonald was born with type 1 SMA and would probably have died had she not accessed Spinraza. She is now a boisterous five-year-old who is keen to start school. While she needs a little help with things, she is growing into an independent young person. At a time when we are fixed on a vaccine helping us to open up, it is clear and obvious to all that medicines can change lives. But in some cases medicines can do more than change lives, they can give life. These two treatments represent the opportunity to live for children who otherwise would not have that opportunity. I can encourage testing across Australia. We have the opportunity to take the terror out of SMA.

Debate adjourned.

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