Remarks at cystic fibrosis rally in Canberra
Tuesday, 7 February 2017
To Nettie and to everybody with Cystic Fibrosis Australia, thank you for having me here today and thank you for the fight and commitment that you’ve made to your family members and your friends.
This is what life is about, and I’m really delighted to be here with Sarah Henderson, who as the Member for Corangamite has been one of the people working within the Coalition for this cause.
When I was younger there was a friend I had at university, his name was Martin Sorenson, and he had cystic fibrosis and we lost him in his early 20s.
And I know what that meant to the family and I know the challenge that he faced and the immense courage, I mean, that was a degree of courage that I just could not imagine, and that’s the courage that you have all had to face and you’ve delivered.
So in that context there are two announcements that I have today. The first is that as of 1 May, Kalydeco will be listed on the PBS.
And that’s what we should do. These decisions are ultimately made by what’s called the Pharmaceutical Benefits Advisory Committee, but we’ve worked to try and make that happen.
And for two-year-olds to five-year-olds, that’s so important. You know it far better than me. I can’t explain to you how important it is, you’ve explained to us and Nettie did last night.
But for beautiful little children like Iggs and Jude, it gives them a chance to have a full life, not just in terms of time but in terms of their day to day existence, and that’s so powerful and so important.
The second thing is that the company that makes Kalydeco has agreed in the mean time to make it available free of charge as of today for those two to five-year-olds.
That may have required a little gentle persuasion from Government and also yourselves. I can’t officially support the protest but you’ve championed your cause.
And so that’s a tremendous outcome. I also want to address Orkambi, because I know that’s very important to many of you here. I have spoken with Nettie.
I’ve also spoken with the head of the PBAC, and I’ve spoken with the company, and urged them to have another go. I don’t want to create false promises or expectations yet. I’d rather under-promise and then over-deliver.
But I have spoken with them all in the last 24 hours and urged them to have another go, and just to keep working, and for me, just to keep working.
So that won’t happen overnight. But I’m pushing and on the path and we’ve been able to deliver the right outcome with Kalydeco, and I am very hopeful that given time, never fast enough, I understand, that we can make real progress on Orkambi.
So, I want to thank you. The cause you’ve stood for could not be more powerful and more important. These are 30 lives immediately and many more over time, so Nettie, to you, but also to the parents of Iggs and Jude and all of these other beautiful young children, thank you and it’s an important day for them.
Greg, look I just wanted to say a few words. A very sincere thanks to Cystic Fibrosis Australia and to the Minister. I represent an amazing young boy called Brodie and his mum Kate and they live in my electorate.
I’ve been very proud to advocate for them and thank you to you and to the entire community and to you, Minister, for being so responsive. This means so much.
They called Brodie their little superhero. And this is going to be life-changing and transforming for Brodie and for all those other young children whose lives will changed forever for the better, so thank you so much.
Okay, thank you.