Date published: 
6 May 2018
Media type: 
Transcript
Audience: 
General public

GREG HUNT:

Well, welcome everybody today to ArtVo, which is in itself a place of immense joy and happiness and opportunity and I think that’s a real message as to what we’re doing here today. I’m delighted to be joined by Sarah Henderson, the Member for Corangamite, who’s been one of the great advocates for the families of these beautiful children with SMA.

To Julie Cini who as the head of SMA Australia and somebody who understands this condition as well as anybody has been fighting for all of the parents and all of the children. To Chris from Biogen for your support and compassion with the compassionate access program and to Professor Monique Ryan, head of neurology at the Royal Children’s Hospital who’s really one of the great clinicians, not just here in Australia but arguably in the entire Southern Hemisphere. But above all else to the families and the children who are here today, children such as Hamish and Ali, Stephanie and Chloe and all of the beautiful kids that we’ve met.

We know that spinal muscular atrophy is such a difficult condition. In many cases of course it has been tragic over the years and for parents this is a message that nobody wants to hear. However, we know that perhaps one in 40 carry a genetic marker. When the combination of parents as such that can lead to one in 6,000 births with an indication that relates to SMA and spinal muscular atrophy is a genetic disorder.

It means that it has an impact on the motor neurones and so the ability to control the muscles and it can be a slow and agonising condition. But today is a day about genuine hope. This is the day where under the Pharmaceutical Benefits Scheme following the advice of the Advisory Committee, I am delighted to announce that the Australian Government will list as of 1 June the miracle treatment Spinraza on the Pharmaceutical Benefits Scheme.

That means that a drug with a cost that would be beyond the reach of virtually every family, $367,000 a year will be available to a patient population, all that require it, a likely population of about 160 families and our investment is $240 million going forward.

But it's not about the money, it’s about the hope and the potential and the possibility and it won't do everything in every case, we need to be very honest about this, but it has made a difference and will make a difference to so many families and so many beautiful children. The children that I've had the privilege to meet and for whom Sarah and Julie and so many others have been fighting.

And to all of the parents this is your day, and to all of the beautiful children this is your future. So I want to thank you and honour you. I’d also note it's a big health day. We've announced $39 million for vaccinating every mother, pregnant mother who seeks it, for whooping cough. That's an important investment.

So every expectant mum can now be vaccinated on the National Immunisation Program and similarly I'm delighted that we've been able to announce $33 million to significantly expand the services of Lifeline. So those who need help can get help when they need it. It's a good day for health and above all else it's a good day for these beautiful children. Sarah.

SARAH HENDERSON:

Greg, thank you very much. Look I just want to echo your remarks and say this is a wonderful day and for Stephanie and Hamish in my electorate and their parents, I know this is absolutely life changing. And what's particularly remarkable about this announcement is that just in a matter of weeks after the Advisory Committee made its recommendation, Greg, congratulations to you because we have now made this announcement that this incredible hopefully life changing drive will be on the PBS.

So, to all the families, to the children who have been such amazing advocates, it's a very emotional day. It is a day that I hope will change the lives of many children including Stephanie and Hamish. Congratulations to you and of course as a member of the Turnbull Government we're absolutely delighted to make this incredibly important investment. Thank you.

GREG HUNT:

Julie.

JULIE CINI:

On behalf of all our families we've been fighting for support services and treatment for the last 14 years. I definitely know my two children who passed away from type 1 SMA, obviously don't have any benefit from this drug but I promised them when they died that I would fix it and today is a massive step forward for me personally and for the association to help those families in the future to be able to have access to the treatment.

We're extremely elated and excited to have treatment for these kids beyond today and in the future. And thank you for the Minister and to Biogen and everyone that worked behind the scenes to assist us in our campaign to raise awareness to the Government about spinal muscular atrophy in the last couple of years and we've done it today. So congratulations to our community. Well done.

GREG HUNT:

Well done.

CHRIS STEMPLE:

Thank you, Minister. Biogen has been involved in research around spinal muscular atrophy for many years and today marks a very happy and important milestone in that journey that we've been on. I've spoken to many families over the last few years about the impact Spinraza can have on their lives and it's really summed up in the one word of hope.

So we're very pleased with today's announcement and very excited about the opportunity for treatment with Spinraza going forward. I'd like to thank Monique and Julie for the great work that they've done in supporting us and I’d particularly like to thank Minister Hunt and indeed the whole of government for working with us very collaboratively and with a great sense of urgency to make this drug available as quickly as they have.

I'd also like to acknowledge that not everyone that could potentially benefit from Spinraza is receiving treatment as a result of today's announcement. But Biogen is committed to making that possible and we'll continue to work on that. Thank you.

MONIQUE RYAN:

This is an extraordinarily emotional and happy day I think for all of us who are a part of the SMA community. And I’ll just very quickly thank Minister Hunt, Chris, Julie and everyone in this room for working to this end because this is, as Chris said, this is hope for children with a very difficult, very sad, very tough, disease and this gives us a way forward for effective treatment and we're very grateful to everyone for their efforts in that regard. Thank you.

GREG HUNT:

Happy to take any questions.

JOURNALIST:

Minister, you described it as a miracle, that's a strong word, but explain to people who may not know anything about the drug and the disease why you’ve used that particular word?

GREG HUNT:

This is about giving families hope. It's also about giving treatment to children, and it won't do everything in every case. I think it's very important to say that. But depending on where a child is in which indication of spinal muscular atrophy it can give them a very, very, very different future from what would otherwise have been the case.

I think Monique is probably better placed to give you the real pathology of SMA but it's a genetic condition inherited most significantly. What that means is that it sees the muscles lose their capacity to function, particularly around the torso and that can lead to a very, very slow and painful decline. So Spinraza is a way through these challenges and for many of these children it's a wonderful day which will transform their lives and transform their futures.

JOURNALIST:

Could we speak to Monique, is it alright? Would you mind just starting by actually explaining the disease and then talking how the drug might affect it?

MONIQUE RYAN:

So spinal muscular atrophy is a genetic disorder and it's caused by, it causes early death of motor nerve cells within the spinal cord. So children with this condition have low muscle tone and weakness and they experience issues related to the weakness of their breathing muscles and swallowing muscles primarily and that is life threatening.

In the most severe form which is spinal muscular atrophy type 1, death is almost invariable within the first two years of age. What we're seeing with this treatment is that that is no longer the case and we can effectively treat the weakness and the swallowing and breathing problems in children particularly with the most severe forms of SMA type 1 but to a lesser degree children with less severe forms as well.

JOURNALIST:

Does it actually cause the atrophy or does it just slow the decline?

MONIQUE RYAN:

It essentially slows the decline. But if we give the drug early enough we can prevent it altogether and that's probably the next step for treatment and Minister Hunt has already provided funding through Mackenzie’s Mission for early and prenatal or postnatal testing, genetic testing for SMA with which we can completely prevent the disease.

JOURNALIST:

Could I ask a few other questions, Minister.

GREG HUNT:

Yes, sure.

JOURNALIST:

Where is the money for all of today's announcements coming from?

GREG HUNT:

So it's part of the Budget. Overall it comes from a combination of a strong economy and careful management of the health budget. We will have been able to invest after today over $8.3 billion in new listings. I think it's about 1500 drugs in our time in government.

That's roughly 31 a month, one a day, and we can only do that by managing the overall budget. But I'm thrilled about the fact that we've done that. We've struck an agreement with Medicines Australia a year ago. That returned an extra $1.8 billion to the Budget for the listing of new medicines and this listing delivers on that agreement and delivers on our absolute commitment that if the experts recommend it, we’ll list it.

JOURNALIST:

Just with the Lifeline funding as well, suicide rates continuing to rise. Is that part of a broader mental health scheme?

GREG HUNT:

Mental health will be very important as part of the Budget. Mental health will be one of our significant health initiatives and in particular we're looking at suicide prevention and the Lifeline support is supporting a wonderful organisation that's helping people at their absolute moment of crisis.

If we can get people through that moment in the middle of the night, the darkness and the blackness where they feel isolated, if they feel that there is somebody to whom they can talk, if they can get the help, if they can get through that moment and have access to treatment, then this can literally save lives. It's a really valuable investment.

JOURNALIST:

And what are you doing prior to this before people get to that crisis point?

GREG HUNT:

We'll see other things in the Budget that are aimed not just at the moment of suicide prevention but early intervention in mental health across a range of areas. The other thing is of course recovery from an attempt at suicide because we know that the period after somebody is discharged from hospital is the period where they are most likely to again take steps to end their lives and you’ll find more focus on that in the coming days.

JOURNALIST:

And in regards to the PBS, Cystic Fibrosis Australia are sort of saying they feel a bit neglected. They're trying to get Orkambi on the PBS. Is there anything...?

GREG HUNT:

The drug Orkambi for cystic fibrosis is coming before the PBAC in July. I am very hopeful that for the first time this medicine would then be listed and we've been working very hard to ensure that everything's in good shape. We recently listed Kalydeco for cystic fibrosis and come July I am now very, very optimistic that everything is lined up and that the case is strong.

JOURNALIST:

Older Australians are clearly awaiting Budget news for home care packages. How much of an investment can people expect on Tuesday for that?

GREG HUNT:

I'm going to leave that respectfully for the Treasurer. But we are very, very focused on a strong aged care package which includes support in-home and in residential care. It's going to be a very good budget for health and for aged care in particular.

Okay. Thank you very much.