Thursday, 18 October 2018
Questions without Notice
Pharmaceutical Benefits Scheme
I want to thank the member for Brisbane, who, before coming to this place, was a strong advocate for a strong economy through his work with small businesses and, since coming to this place, has built on that work with being a strong advocate for the listing of new medicines such as Orkambi, in which he took a deep, strong, personal interest. One of the things that he knows is that it is critical that we have a strong economy in order to list these new medicines because, if we don't, as we saw earlier, if fiscal circumstances did not permit, as was the case under a previous government, new medicines would be deferred. We've dealt with that risk at length this week.
But I particularly want to focus on why the strong economy allows us to list these new medicines. In particular, today, we see an unemployment rate of five per cent and 1.1 million new jobs. That allows us to ensure that all of the new medicines that the medical experts recommend should be listed are listed.
There's one in particular that I want to focus on because this brings us all to the point of why we are in this House—the very things that we seek to achieve. One of the topics that the Prime Minister helped bring to the parliament was spinal muscular atrophy. It's a cause that's been deep and close to him, and it's something about which he has been passionate. A new medicine that we were able to list earlier in the year was Spinraza. Spinraza, which is also known as nusinersen, is for spinal muscular atrophy.
I've received a letter which was conveyed to the member for Corangamite from a family in her electorate, the family of Stephanie Nave. I met with the parents, Amanda and Mark. They talked about what this medicine, which would have cost $370,000, has meant, since it was listed, for their beautiful little daughter Stephanie. As Amanda says: 'It has now been four months since she'—this is Stephanie—'and the first batch of SMA kids to be treated have started, and, for Stephanie at least, the results have been nothing short of amazing. At her physio visit seven days after the first treatment, she was not only able to sit in a preloved manual wheelchair that friends had given us, but she could push it, on carpet. Each and every day we see new things, and she is continuing to get stronger. She has more energy. She's become very chatty, and, because her lungs are stronger, with increased respiratory muscle strength, she's spending a lot of time singing. It is wonderful to finally have some optimism and return to a time when you are able to celebrate milestones and not simply watch skills vanish.'
This is the story of listing new medicines. This is the reason we have a strong economy. This is why we deliver the new medicines, because, at the end of the day, whether it's Stephanie or other children, if we can save and protect their lives, then this parliament is doing its job.