Chris Crewther (Dunkley, Liberal Party) Share this | Hansard source

It was an absolute pleasure on Saturday night to attend the Spinal Muscular Atrophy Australia annual gala dinner, 'Reach for the stars', joining local Dunkley residents, Georgia, Stewart and Ally from Seaford, as well as Ally's friend Lily, along with Jason Wood MP, Spinal Muscular Atrophy Australia members and many others to support those who are living with spinal muscular atrophy.

Earlier this year, the Minister for Health announced that Spinraza, a key treatment for SMA, which is a rare genetic neuromuscular disorder, would be added to the Pharmaceutical Benefits Scheme after much advocacy from me, many other members of parliament and those outside of parliament. From 1 June this year, we made Spinraza available on the PBS for the treatment of types 1, 2 and 3a SMA for all patients under the age of 18. We were able to do this by managing the economy well, meaning we could list these drugs on the PBS. We continue to advocate to get this listed for adults as well.

This medicine works by slowing the progression of the disease and, in many cases, the drug can halt the progression of the disease. For others, it can significantly improve motor function. It is expected around 160 patients will receive treatment every year as a result of this listing. Without being added to the PBS, patients would otherwise pay over $367,000 a year for this medicine. The PBS listing has instead reduced the cost for patients to a maximum of $39.50 per script for general patients and $6.40 for concessional patients. I've spoken to countless families in my electorate and elsewhere about the need for this vital medicine, and I know what a positive difference it will now make.

To personally hear from the families who have directly benefited from the Turnbull coalition government's actions to provide additions to the PBS, and to see firsthand the impact on so many people's lives, has been both an encouraging and a humbling experience. This addition to the PBS delivers hope for so many incredible young patients and their families. Since coming into government, the coalition has helped improve the health of Australians by subsidising more than $8.3 billion worth of new medicines. We are now subsidising all drugs recommended by the PBAC.

Our commitment to the PBS is rock solid and, together with Medicare, it is a foundation of our world-class healthcare system here in Australia. I am proud of our government's actions and the responsible management of the economy, which means that lives can be changed in such an impacting way. I will continue to advocate for people with spinal muscular atrophy, both below the age of 18 and those above, both now and into the future.

See this speech in context