This content relates to a former minister

Doorstop interview about the PBS listing of Kalydeco for children aged 12–24 months

Transcript of Minister Hunt speaking about the Australian Government's decision to list Kalydeco for the treatment of cystic fibrosis for young children on the Pharmaceutical Benefit Scheme from 1 August 2019.

The Hon Greg Hunt MP
Former Minister for Health and Aged Care

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Good morning everybody. Welcome to Monash Children’s Hospital. I’m David Armstrong, Head of the Paediatric CF Service.

It’s my pleasure to welcome Nettie Burke the CEO of Cystic Fibrosis Australia, the Minister of Health and the Federal Government Greg Hunt, John Wilson the Director of Cystic Fibrosis Services at the Alfred Hospital, and Katie Allen, Member for Higgins.

So Mr Hunt, please.


Great. Look, thanks very much to Professor David Armstrong, to Nettie Burke, to Professor Katie Allen, to John Wilson who’s such a leader in his own right, and to Andrew Stroop for having us here at the amazing Monash Children’s Hospital.

Today is about beautiful children such as Anna and Scarlet, and thriving adults such as Alex.

These are people who have been facing the challenge of cystic fibrosis and we know that cystic fibrosis historically has been a very frightening diagnosis for parents and for families with young children facing this great challenge.

The heaviness of the burden on the lungs, the mucus, the impact on lifestyle and life expectancy have all been a great challenge.

Now we have new hope and real hope and to see the way that Alex is thriving as an adult, that Anna and Scarlet are flourishing as children, is to see medical science meet human miracles and it’s a wonderful thing.

So I’m delighted to announce that the Australian Government will list Kalydeco for the treatment of cystic fibrosis for beautiful young children between the ages of 12 and 24 months on the Pharmaceutical Benefit Scheme from 1 August.

This medicine would otherwise cost $300,000 a year and that’s beyond the reach of virtually every family.

And so bringing it down to $6.50 or $40.30 a script we’re giving these children, and their parents, and their friends, and their family’s real hope.

Just listening to the stories, Alex telling us how her life has been transformed by access to Kalydeco says that these young children who will now have access will have a better start to life and a long, full, rich, life.

Because we know because of the work of Nettie, and David, and John and so many others new medicines are coming down the pipeline.

Within a few short years we expect to have what’s called a triple combination available in Australia which will expand and extend give these children a chance of a full measure of life and a full quality of life.

And so each new step delivers new hope.

I’m also delighted that we’re able to list two other medicines for infection control, Fluclox and Bicillin, on the Pharmaceutical Benefit Scheme from 1 August and they’ll help over, between them, half a million people have access to better infection control whether it's in relation to staph or to micro-organisms that need a particularly targeted approach from Bicillin.

And then finally Testavan will be listed on the Pharmaceutical Benefits Scheme for people with testosterone related conditions, in particular over 10,000 Australians will save up to $1400 a year to have access to medicines that will assist them with testosterone related conditions including limits on their growth.

So we give them a real chance at literally full growth in life and these things have a profound impact on the quality of life.

You can only list medicines on the Pharmaceutical Benefits Scheme if the economy is strong, and that's what we're doing but you can only do this if you have a compassionate approach.

So I particularly want to acknowledge Katie Allen, she's now the Member for Higgins, but she was throughout her career one of Australia's leading paediatricians. So this is literally bringing together the two parts of her life and her work.

So I want to thank all of those involved but to say, today is about saving lives and protecting lives, and it's about delivering the benefits of a strong economy so as we can actually support Anna, and Scarlett, and Alex.

I'll invite David and Nettie and Katie to say a few words. David?


Thank you very much. I'd like to echo those thoughts.

As a clinician involved in cystic fibrosis over the last 25 years I can say that the use of these medications for patients has been literally, has been literally life changing and those stories we heard today are quite typical of the stories I hear in the clinic.

So we do indeed look forward to further advances in this type of therapy as we’ve heard as the triple combinations come down the line. So a very exciting time for us all in the cystic fibrosis role.




Thank you. Well this is a good news day. And thank you Minister Hunt for Kalydeco, for our little babies.

We have been fighting for this and now there's a lot of families out there who’ll take a sigh of relief to know that their children can get the best care as soon as possible. And we’ll stave off lung damage and we'll also extend their lives.

So I think that probably the worst nightmare would be being told that your child has an incurable disease and that their life will be limited.

I think the second worst nightmare would be told that there's a drug out there and it could change all that but you can't get access to it.

So we are very lucky to live in Australia. We're very lucky to have a Minister who understands how important it is that people get these drugs. And we now have Kalydeco and this is a game changer.

Now we're not there yet. So we have solutions for almost 50 per cent of people with CF. We've got a bit of a way to go, and as the Minister has said, the triples coming down the line – we've got SYMDEKO, which is also on its way, and we've got ORKAMBI for the little ones, from two to five.

So we're going to keep fighting and I want to warn you, Minister, we're not going to stop until we have a solution for everybody with CF.

We are grateful that we're on your agenda and we're going to do everything to stay on your agenda so that we can get rid of these nightmares and we can actually fulfil the dream where people with CF in Australia don't have to put up with this devastating lung damage; they don't have to put up with a disease that limits their life, and that they can have the greatest life expectancy possible.

So thank you again. And can I get a round of applause for Kalydeco?


Thank you so much. Thank you.

It’s a total privilege to be here because, you know, 25 years ago when I was a young doctor we would have wards full of patients who were in hospital for such a long period time with cystic fibrosis and their future was bleak.

And as Nettie said, a parent who has a child that doesn't know whether that child is going to reach adulthood even – it is an awful thing to actually have to live with.

And these new drugs, since I was a young resident 25 years ago, have come online around the world and Australian medical research has been part of that, and our clinicians and Allied Health and nurses and patient support groups have been so important in bringing this all together.

But the final bit of the jigsaw puzzle is actually getting it funded. And if patients have to go overseas and they can't afford to go there, then that makes hope so much more distant.

So, to be part of a Government that delivers a strong economy that can then deliver hope and real outcomes for patients; is such a delight to be here and I feel so proud to be part of a Government that is going to deliver for children and adults with cystic fibrosis; but particularly Kalydeco to be available for children between the age of 12 and 24 months.

When children are just starting off in life, that's when we want to get it right, and getting it right very early on means that their future will be positive and optimistic.

And the families around them, the doctors around them, and also the support groups that have been working so hard to make sure that access for children and adults with cystic fibrosis has the latest and the greatest right here on our doorstep in Australia.

Thank you.


And I’ll also invite John.


Thank you. Thank you, Minister.

I am very pleased to say that this advance in medical care is ground-breaking.

What most people in this room will not realise is that the people making these decisions and announcing them today are creating world first.

This is really a global event. It's so important to understand that medical research in Australia has actually created the evidence upon which we make these decisions.

It is incredibly important that the Australian public realises the importance of this event. This is an expensive drug. It is a ground-breaking drug. It is a treatment for a genetic issue that all of us carry in one form or another. And I very much appreciate the Minister's announcement today.

Thank you very much, Minister.


Thanks John. All right. Thank you. Happy to take any questions on this and then other issues of the day.


Minister, how many additional people are you expecting to benefit from the latest listing?


So we think that it will be between five and ten children a year. So it's a small number of children but that's evidence of why this is so important – because we care about each child.

At the same time, over half a million people will potentially benefit from the infection control measures.

So, the PBS covers both parts of the spectrum – the large numbers but also that intense, compassionate focus.

And whether it's five or ten children like Anna or Scarlett, if it were just one that would be enough, but to have that number, that matters to each of those families.


And how much is it expected to cost on the PBS?


So, it will cost the PBS about $2.5 million. But it's money well spent and well invested.


Is it new money or is it existing money?


So - no, each of these is an additional investment. So, that's what we do with the Pharmaceutical Benefits Scheme – we continually add, and if the medical experts recommend, unlike our predecessors, we will always list these new medicines and make them available.


Can this medicine be available for children under 12 months?


So, at the moment we follow the advice of the experts. So, it's on the basis of what they deem to be safe and effective, and if they recommend an expansion – just as we're doing with this – we will always implement it.


And so then, who now has access to this drug Kalydeco? Is it, so, 12 months to adulthood? Is that right? Or exactly (inaudible).


Well, what you see is somebody like Alex, who's an adult, and she has access to it.

So it's across a spectrum, and what we've done is expand the access to this. We have- or ORKAMBI, which is another breakthrough medicine that would have cost over $200,000 per family.

And the way that medicines for cystic fibrosis work – and David, please feel free to step in to add to this – is that some medicines will apply to different subtypes of the condition.

So, this is a particular genetic mutation, ORKAMBI covers a broad part of the population.

But what we want to do is get to 100 per cent of the population and the medical researchers are working right now to produce what's called a triple combination therapy, and that will apply broadly, not universally, but broadly across the CF community and Nettie won't let us stop until we've got everybody covered.


How long have you been working to have this drug subsidised?


Well, we've been working over two years since we made the expansion for the children between two and six years of age on 1 February 2017. This was the next target, but it was about clinical trials to prove that it's safe and effective.


Just on other matters. Minister, the Parliament’s back this week. What’s the Government’s priority?


We want to make sure that Australians are safe. And that is why we are introducing the counter-terrorism temporary exclusion orders bill.

We would like the Labor Party to drop its opposition and to support protecting Australians against people who have been involved in counter-terrorism.

We see today that this bill will have a real effect, that if we can pass this legislation we will be able to have the time to provide the temporary exclusion orders, to do the assessments, and therefore to protect Australians.


Who’s the target for this? Is it foreign fighters or anyone who’s traveling into foreign warzones?


Well, I'll leave the details to Peter Dutton, but the focus here is to make sure that those people who are deemed to be a risk to Australia because of their engagement in terrorism activities and activities contrary to Australia's national security are not allowed back.


But having them away for two years – is there a concern that that could further radicalise them?


No, this legislation is based on the best advice of our intelligence agencies.

It's based on the best advice of the AFP, and it's designed with a very simple goal: to protect Australians from people who want to damage our way of life and carry out acts of terrorism.

And I cannot for the life of me understand why the Labor Party would have any hesitation. This week, this fortnight, is a test for Mr Albanese.

Will he stand up to the left of his Party and stand up for Australians, or will he capitulate to the left of his Party and not stand up for the safety of Australians?


Just on Newstart, I understand that this year it’s gone up about $2 a week. Is that really enough for people to live on?


Look, we know that it’s always a challenge. So, our goal is to get as many people into work as possible.

We've already helped create the environment where 1.3 million jobs have been delivered, and we want to create more jobs.

We know that 99 per cent of people on Newstart have additional supplements, but the number 1 thing is to give people the chance to get into the workforce and to have the dignity and the economic security which comes with that.


Do you think it should be increased?


Look, I'll leave those matters to the Prime Minister and the relevant ministers, but our focus is to create the economic environment which not only provides the essential services such as new medicines; but also creates the jobs which give people the opportunity to have economic security and the personal dignity and satisfaction of work.

All right. Thank you very much.


Thank you very much.

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