Press conference with Minister Butler, Sydney – 24 June 2025

MARK BUTLER, MINISTER FOR HEALTH AND AGEING, MINISTER FOR DISABILITY AND THE NDIS: Thanks so much for coming out to this beautiful location on the Sydney Harbour for a really exciting announcement today. Our government has made a lot about our commitment to cheaper medicines, reducing the cost of scripts at the pharmacy. For pensioners, we've frozen the cost of co-payments for the rest of the decade. For general patients, those Australians without a concession card, we're reducing the co-payment from 1 January next year to a level it hasn't been at since 2004. Cheaper medicine, as we know, is good for the hip pocket at a time of cost-of-living pressure, but we know it's also good for health.
 
But the central plank in cheaper medicines policies for Australia since the 1940s has been our wonderful, world-leading, Pharmaceutical Benefits Scheme. It gives Australians access to high quality affordable treatments from around the world quickly, and as I said, at affordable prices. The PBS is a great Labor legacy. We created it in the 1940s. We've been defending it ever since. We've said it would never be on the negotiating table for a trade agreement with any country from around the world. And today's really exciting announcement just drives home the power of the PBS for Australians.
 
Today, we are announcing the third expansion, so the fourth effective listing of a wonder drug called Trikafta. This drug, developed by Vertex, is genuinely changing and extending the lives of Australian patients with cystic fibrosis, a condition that is incredibly debilitating and can often lead to early death. I've heard story after story about the way in which patients' lives, often children's lives, have been utterly transformed literally within a day or two by taking this drug, Trikafta. We're going to hear from Nathan who's going to talk about that from his personal experience too. This drug is a wonder drug, but it's also an expensive drug. Without a PBS listing, this will cost patients around $250,000 a year on the private market. But with PBS listing, you get it at just $7.70 if you have a concession card or $31 going down to $25 in January if you don't have that concession card. Progressively, we've been expanding these listings, and with today's expansion that takes effect on 1 July, we think – Jo will tell the number precisely, but we think as much as 90% or more of cystic fibrosis patients in Australia will have affordable access to this treatment. Jo will again say we are now one of the leading countries in terms of access to Trikafta.
 
So, I'm going to hand over Jo Armstrong, who leads Cystic Fibrosis Australia. We're also going to hear from Nathan Charles, a great Australian sporting identity but also a patient who's lived with cystic fibrosis since he was just 3 months old, and some clinicians as well. Thank you very much. And then, we're happy to take questions about this or other matters.
 
JO ARMSTRONG, CEO, CYSTIC FIBROSIS AUSTRALIA: Thank you, Minister. Good morning, everybody. As the peak national body for all Australians living with cystic fibrosis, we celebrate today's announcement. Cystic Fibrosis Australia has long been advocating for equity of access so that all people who benefit from medications will have access to them. Today's announcement means that hundreds of people living with cystic fibrosis will have access to a medication, including people with rare and ultra-rare gene mutations. Many of those people never anticipated, never thought in their wildest dreams, that this medication would become available for them, and that hope has now turned into a reality. On 1 July, people with rare and ultra-rare mutations who don't have the Class 1 genes will be able to access Trikafta.
 
This is a huge win for people with cystic fibrosis in Australia. Australians can be proud to be in this country because of today's announcement. Australia is now a global leader in equity of access for cystic fibrosis care. As the peak national body for all Australians living with cystic fibrosis, we celebrate today's announcement. We still have a lot more work to do so that all people can have effective therapies, but today, we celebrate. We thank the Minister and the government for their pragmatic approach to this listing, and thank the community for supporting us in our advocacy as well. Thank you.
 
NATHAN CHARLES, FORMER WALLABY, LIVES WITH CYSTIC FIBROSIS: I purposely didn't prepare anything for this today because the magnitude of what today's announcement is something that words really can't explain or express. I, and many other sufferers of cystic fibrosis, get a second chance at life with an improved and increased quality of life and get to do something that many people were told we couldn't do before. The barriers have lifted and people with cystic fibrosis tend to be quite headstrong and very resilient. I'm very excited about today's announcement and what that means for people with cystic fibrosis, they get access to this drug, on what we can achieve together.
 
Our vision at Cystic Fibrosis Australia has been lives unaffected by CF. Today is a massive step forward in achieving that vision, and I for one am just really speechless. I know what this is going to do for my life, and I only hope that what I've been able to achieve in my life so far is overcome and overshadowed by people coming through knowing that they can achieve anything they set out to achieve in life. I can only thank the Minister, the people at Vertex that have made this a possibility. You really don't know the impact it's going to have on our lives. I just cannot thank you enough. I'm really excited. This is not the last time you'll see of me trying to break new records, trying to break down those walls, and continue to lift those barriers for people that have cystic fibrosis and other conditions that face barriers in life. So, again, thank you so much for today, the announcement and the accessibility. I just cannot wait to get on this wonder drug, Trikafta, and the quality it's going to give my life moving forward.
 
JOURNALIST: Can I just ask, sorry, were you taking the drug beforehand?
 
CHARLES: No.
 
JOURNALIST: So what stopped you from taking it?
 
CHARLES: Accessibility, cost. I was part of a research trial where I got a brief 2-week access to it. And within a couple of days, the impact it had on my life was significant. My lung function increased by 13 per cent. I got out of bed with a spring in my step, the mental benefits, and also the physical benefits. I wasn't constantly coughing up mucus, all the great things that people with CF have to do every day. And the barrier has been accessibility and cost, so today's announcement completely removes those barriers and again enables me to live a longer, healthier, and higher-quality life.
 
CLAIRE WAINWRIGHT, AUSTRALIAN ACADEMY OF HEALTH AND MEDICAL SCIENCES: I’m Claire Wainwright, I’m a paediatric respiratory physician and I look after children and young people with cystic fibrosis, and I’ve also been part of many of the clinical trials for these drugs. Now, one of the amazing things about our system here in Australia is that we have actually taken the step of moving to an equitable situation for all people who can benefit from this medicine. So the clinical trials were originally done in people with more common genetic fibrosis, but we knew from many studies that are done in cells and in other systems that more than just that group could benefit. And, in fact, here we now have this amazing announcement that people with rare variants who were not necessarily able to take part in these clinical trials will get access. And we know that everybody who can benefit in this country will get that opportunity – even people with very, very rare genetic variants – and I think that’s extraordinary. So our thanks to the TGA, to the PBAC, to the Department of Health and especially to the Minister for approving this amazing announcement. And I think Australia is well ahead in many, many ways, but this really opens the door, I think, for a new world in medicine. So my thanks to all of them. I’ll take any questions if you’ve got any.
 
JOURNALIST: Just expand on how life-changing this is – what are the benefits for children and others taking this drug?
 
WAINWRIGHT: Well, in very young children the medicines can actually save something that is really quite extraordinary. So if you can imagine, if you're born with cystic fibrosis, from around sort of between 80 and 85% of those individuals will have pancreatic dysfunction, which means to absorb the proteins and fats in their diet, they have to take medicine with every meal. And you can see how much they have to take – sometimes it's up sort of 20 to 30 tablets a day. So for young children, that's quite something, and that's because their pancreas isn't working.
 
Now, these medicines taken earlier can actually protect the pancreas, so that's just one of the aspects. But these medicines also – what they do is they recover a protein that is abnormal. So if you like, if you're making a protein, these medicines actually can collect that protein and make it work – so it's like a sort of magic trick, if you like. You can actually get that protein working, and as a result you get the benefits from health. Now, the earlier you start, the better in the long term. But even for young people and adults it's extraordinary, because suddenly their body is working much more normally.
 
JOURNALIST: Are we talking about extending their lives?
 
WAINWRIGHT: We are talking about extending their lives. And it's guesswork, but maybe 20 to 30 years is the sort of guesstimate, if you like. And even without these drugs, the sort of estimated life expectancy was in the mid-50s. So you add another 20 to 30 years, and that's healthy life. I mean, that's just extraordinary, isn't it?
 
JOURNALIST: Amazing. Yeah, I'll just ask if there's any other further considerations for Trikafta on the PBS?
 
BUTLER: The approach we've taken is to follow the evidence. So, the early evidence was about a particular genetic mutation that responded very well to Trikafta, and we expanded the listings to different age groups. But as Claire has said, the Advisory Committee on Medicines has taken a different approach here, looked at real-world evidence about the impact that Trikafta can have on patients like Nathan who don't necessarily have the genetic variants that was originally identified in the first listing, so we take an iterative approach here. When evidence emerges that there's a new patient group who will benefit from a drug like Trikafta, our approach is to take the advice from the medicines experts, and if they advise to list it on the PBS, in that way, we'll do that.
 
JOURNALIST: Can I just ask, is the government considering YouTube back into the under-16 social media ban as the eSafety Commissioner is demanding?
 
BUTLER: Our first principle is to protect young people under 16 from harms that they encounter online. We're world leading on this. I can tell you my health minister colleagues around the world are watching this very closely because they know the impact that online harms are having on the mental health of young people in their countries, and I think they recognise the world-leading nature of these reforms. The Minister, the Communications Minister, Anika Wells, had asked for this advice from the eSafety Commissioner. Once she received it, she released the advice, which is why the media is talking about it over the course of today, and obviously we're going to carefully consider that advice – the Minister will. We're in the process of drafting those rules. We want these bans to take effect from December this year.
 
But again, I come back to first principles. This is about protecting our young people, and we're determined to craft the rules in a way in which achieves that objective.
 
JOURNALIST: The US President, Donald Trump, has announced a ceasefire between Iran and Israel. Does Australia welcome that news?
 
BUTLER: Well, of course we welcome this announcement. We've been calling for de-escalation and dialogue after the strike by the US on the three nuclear facilities in Iran – a strike that we've said we supported to end that nuclear threat to the region and the globe more broadly. But we've said since that strike the time now is for de-escalation and avoiding this moving into a fully blown war, so we very much welcome the announcement over the last couple of hours by the President and look forward to that de-escalation.
 
JOURNALIST: And just finally, why will physiotherapists and other allied health professionals get their NDIS funding cut?
 
BUTLER: The NDIS price determination this year for the first time, really, reflects a very detailed analysis of the market more broadly – not just in disability care, but in aged care and healthcare and veterans care, because we want to make sure that NDIS participants are not paying above the odds for therapy and for their support. We want to make sure that taxpayers are getting value for money for this significant investment that they're making into this ground-breaking scheme, the National Disability Insurance Scheme. So the price determination for allied health services like physios reflects a very, very thorough market analysis about the prices that frankly prevail in other parts of the health and social care system. I support the NDIS board in doing that.
 
JOURNALIST: Sure, but they say that they're charging more because the cases they deal with are more complex and they require longer appointments. What's your response to that?
 
BUTLER: Well, obviously that's been factored into the determination by the NDIS board. They did this carefully. The number of data points they looked at is extraordinary, and I think the approach they’ve taken this year is a really responsible one. Thanks very much.