26 February 2020

I acknowledge the traditional owners of the Canberra area, the Ngunnawal and Ngambri peoples, and pay my respects to their elders past, present and emerging.

As we do that, we should also acknowledge that Indigenous Australians experience a burden of disease at 2.3 times the rate of non-Indigenous Australians and that we must recommit ourselves to the urgent task of Closing the Gap.

It is important and appropriate that the Action Plan launched today recognises the lack of research into rare diseases most prevalent within Aboriginal and Torres Strait Islander people.

Well I'm delighted to be here to join with Greg and launch this very important plan. This very important document. There's plenty to argue about in this building. It was built to facilitate a national argument, thats why it is here.

There is also plenty to come together, to unite in favour of and thats what we're doing today. Just as we argue about things it's also important for people to know that there will be differences after the next election depending on who wins. There will be policy changes that make differences to whether Labor or Liberal are in Government.

But some things will continue. But it doesn't matter who wins the next election. This document will be implemented. And it will.

The issue about rare disease is that of course they are by definition difficult to get attention for. But the very important document lays it out very clearly, and the numbers are clear.

We've already heard more than seven thousand rare diseases impacting on two million Australians, so rare diseases aren't actually all that rare at all.

But more importantly than the figures is, of course the human story.

Every one of those 2 million Australians has a story and is a message, is a tragedy in many senses, but it is also a message of hope for every single one of us.

Its dangerous to pick a couple of conditions out of those seven thousand. Greg was brave enough to pick a couple in the spirit of bipartisanship I'll mention a couple as well.

But we have Duchenne's Muscular Dystrophy is one. I pick that because one of those two million Australians whose story I'll just share with you briefly is little Ollie McPhail. A little mate of mine. He is nine years old.

Mike and I saw him on the weekend when we walked for Duchenne Muscular Dystrophy in Sydney. He was diagnosed at 10 weeks old. We all know the prognosis for somebody with Duchennes. It's not a positive story.

But he is a brave and delightful young man. His family is determined to make their contribution they started a charity, Hope for Ollie which produces and sells children's clothing.

They provide the profits to the Neuroscience Research at Westmead Children's Hospital, the Medical Research Institute.

They are determined to provide hope for every sufferer of muscular dystrophy. And they are.

And that's really our job here to provide help for all people interested in rare diseases. And in that vein I will mention one other condition. The condition Ill mention is Mitochondrial Disease.

Now I had not long been Shadow Minister for Health when Sean Murray came to see me. He is here today and let me give you a tip he is a very effective advocate. Much like Nicole. He came in to see me and he brought a colleague with him and I introduced myself. He said But you two already know each other.

Now in our line of work that can happen you meet a lot of people and sometimes it takes you a minute to remember who is who. And he said his colleague met me twenty years ago when I was Mayor of Fairfield and he was in year eleven.

And he came to see me when I was Mayor to convince me to build a skate park for the young people of Fairfield. Which we did. The skate park is still operating. Sean said we thought given his successful advocacy we might make it two from two. A pretty compelling story.

I mention Mitochondrial Disease because there is hope. There's been a Senate Inquiry, the Government has correctly commissioned the NHMRC for further advice and we are nearing, I think and I hope, a process in which this Parliament can come together and deal with the confronting, difficult, complex issues of a cure for Mitochondrial Disease going forward to dispel it from our life. There is one baby born every week, it saps the energy out of the cells and it is a terrible condition.

I dont reveal private conversations but I'm sure Greg wouldnt mind me saying we have interacted about how we might jointly manage that process through the Parliament to enable a mature, non-partisan, sensible debate on the floor of the Parliament about the next steps on Mitochondrial Disease. I'm confident that will happen over the next months and Im confident we will do so. And so my message today is that it's a pleasure to come together with Greg to endorse your work. Its not our work, its your work, your voices, the real voices come together for a strong voice.

And I see the plan as the start. Ive been here fifteen years and I have been to many launches. Some launches have led to good things, others gather dust. This one cannot gather dust. It will only achieve anything if it is implemented.

It will be implemented regardless of who wins the next election and I see it as the start not the finish. The base of action, the minimum action necessary for rare disease, for real action on the many conditions affecting Australians.

So thank you for all the work that has gone into this document. Thank you for all the work that will go into implementing this document. It is my pleasure to jointly launch it this morning.