Minister Butler doorstop in Adelaide - 22 October 2022

Read the transcript of Minister Butler's doorstop on cheaper medicines; November PBS listings; Medibank data breach; the Budget; South Australian Government.

The Hon Mark Butler MP
Minister for Health and Aged Care

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MINISTER FOR HEALTH AND AGED CARE, MARK BUTLER: Thank you for coming this morning. 

The Albanese Government was elected on a very clear platform of cutting the cost of medicines and strengthening Medicare, and today I'm very pleased to announce some further commitments in that area.

First thing that we will be doing is delivering the biggest cut to the cost of medicines in Australia's history on Tuesday night in the Budget. I can confirm that $787 million will be allocated in the budget on Tuesday night to deliver that biggest cut to the cost of PBS medicines ever.  

The general patient costs for a co-contribution will be slashed from $42.50 to just $30 from the first of January 2023. And there could not be a better time for that relief for Australian households' hip pockets than right now when they're experiencing such pressure with the inflationary environment.  

But we also know that this is extraordinarily good for their public health. We know from the Bureau of Statistics that as many as 1 million Australians every single year defer, or go without, a medicine that their doctor has prescribed for them as important for their health.  

I've spoken to pharmacists' time and time again - I did again this week - who tell me stories of their customers coming into them with a few different scripts for medicines that they, or their family members, have been prescribed by their doctor and asking for advice from the pharmacist which ones they don't have to fill because they can't afford them all. This is not good for productivity, and it's not good for public health.

This will mean that every single script at the maximum price will save $150 for a patient and their family. For families who are on maybe 3 scripts a month, they will save as much as $450. This $787 million commitment on behalf of millions of Australian patients will put $190 million dollars back in the pockets of hardworking Australians each and every year.  

The second thing I'm very pleased to announce today is that the week after next, we will be listing four new lifesaving, life changing medicines on the PBS. Those listings will make these life changing medicines accessible and affordable for hundreds and hundreds of Australian families - some of whom I'm delighted to have been able to join me here today.  

The first of those medicines is a medicine called Libtayo, which is an immunotherapy for the most common form of skin cancer. This extraordinary medicine will now be available at PBS prices for around 1000 patients every year who would otherwise be paying as much as $144,000 for a course of treatment.  

Now that will be available under the PBS price - a maximum of $42.50 per script, which will reduce down to just $30 a script on the first of January.  

There are also two new medicines for lung cancer, which will also be available to more than 500 patients we estimate each and every year, who would otherwise be paying about $100,000 for the course of treatment that it involves.  

I'm particularly delighted today to announce the listing of a medicine, Crysvita, for a very rare but potentially very debilitating condition called X-linked hypophosphataemia or XLH.  

This is a rare condition that affects several hundred Australians at any one time. And this listing is the first new substantial therapy for this condition for decades.

Australia after the week after next will be one of, if not the first, country on the planet to have listed this life changing, lifesaving medicine, not just for children, but for adults with this condition as well.  

Without the PBS listing this treatment would cost around $360,000 for each and every family, each and every year. But the PBS listing obviously makes that accessible and affordable to them.  

I'm going to ask Sandy from XLH Australia to talk about what this medicine means for her constituencies. But before doing so, can I just pay tribute to the XLH community, they have worked so hard to get to this point. Our clinical leaders who have been working in this area for a very long time deserve great credit. As do the researchers and the company that have sponsored this extraordinary treatment, they deserve great credit as well.

But I particularly want to single out the XLH community of families, XLH Australia, who've been bringing attention to what is a relatively rare condition in Australia, and really driving momentum for this to be listed on the PBS to change the lives of hundreds of children, and now adults as well, who live with XLH.  

So, I'm very pleased to hand over to Sandy to say a few words about that. And then after that, I'm happy to take questions. 

SANDY BEVC, PRESIDENT, XLH AUSTRALIA: Thank you, Minister Butler.  

This will be a life changing medication for a lot of the XLH community, this a full body condition that can affect your quality of life every single day. We are so thankful for everyone that has been involved, including the XLH community, industry, and the clinicians that have gone above and beyond to help us get through this process. 


JOURNALIST: Having this now on the PBS, and this is what's been referred to as liquid gold, how important is that is that for families in terms of relieving stress? 


BEVC: It's a huge relief, it is a really big burden to have this disease, having children have access is the peak time to have this medication. It will bring a lot of normality to their life.  

And kids like Noah and Talia are able to do sports that they enjoy, not having to have surgeries, not having to have pain constantly, and be included in social events.  


JOURNALIST: Without this medicine being listed on PBS. What impact was that having on families? Were kids going without when they can’t afford it? 

BEVC: Yeah, the traditional medicine is quite intense. You have to have it quite a number of times during the day, which is hard for children when they're at school, you have to rely on proper dosages.  

And also at school, you can't be included in certain things like sports - you get fatigue, you don't want to be involved with other children. It's a very isolating condition.  

JOURNALIST: The Minister mentioned about how much it costs, which is an enormous amount of money before, for instance, the PBS. Would there be families that simply just could not afford it, and they’re now going to have access to the treasure? 


BEVC: Yeah, there is criteria for access for the treatment as well. But the cost is a big burden. You know, it is life changing. We've seen it. Research has shown that it makes a big impact on lives. And hopefully it takes some of that burden off families and they have affordable access. 

JOURNALIST: How many Australians are living with this? 

BEVC: XLH in Australia, as we as far as we know, about 250 people. It can also be spontaneous, which is what I have. So, there's no family history. 

JOURNALIST: And just how much lobbying has there been from the organisation and families to get to this stage? 

BEVC: A lot of work. I've been advocating for probably over 20 years. But XLH Australia was formally introduced by volunteers in 2018. So, we've been doing a lot of meetings, we were lucky enough to have a Parliamentary Friends meeting with Mike Freelander, which is fantastic to spread awareness. 

But a lot of applications, a lot of community input, and a lot of opportunities as well.  

JOURNALIST: So, when you got the news that it would be listed, what was that like? 

BEVC: It's surreal. I don't think it's actually hit us yet. But it's been a lot of chatter from the XLH community. And we can't wait to have that access.  

MINISTER BUTLER: Just to follow up on one of those questions, some families who have been able to access this medicine through the compassionate access program that's been provided through the generosity of their company - I want to pay tribute to them for that, but not all have been able to.  

So, there's been extraordinary activity from some families, Noah, other than being a Crows supporter, is a terrific young bloke whose family has been running the petition to drive momentum for much more universal access for the 230 or 250 patients who we think will benefit from this listing. And I want to pay tribute again to those people.  

JOURNALIST: So, the 250 people that are believed to have it across Australia, how accurate do you think that number is? And do you think there's a need for more studies? 

MINISTER BUTLER: I think we've identified, we think, about 230 to 250, who will be eligible for this medicine under the PBS. Those were the numbers that were used by the Advisory Committee. I've read material that indicates that some people might have this condition but have not been diagnosed properly given how rare it is.

I think with bringing awareness of XLH to the to the public through this process and the extraordinary work of XLH Australia, I think there's much more chance that everyone with the condition will have a have an opportunity to be diagnosed and be given access to this treatment.  

JOURNALIST: How do you access these medications?  

MINISTER BUTLER: We've been talking about this a little earlier with Sandy, this is not a tablet, it’s an injection that's given every couple of weeks – fortnightly for children and monthly for adults.  

Very different to the mode of delivery that Sandy was talking about with the existing treatment, and it will probably initially be delivered through public hospital systems, much of this has been happening through the compassionate access program already. But over time, we'd like to see that move into the community through GPs.  


JOURNALIST: Is this mildly centred around the cities in terms of public hospitals that have access to it or, you know, for example, in regional areas, would you have to travel to the city to access it? 

BEVC: Yes, you would to start with.  

JOURNALIST: Would there still be the criteria that needs to be met for someone who's eligible for this medication?

MINISTER BUTLER: That's right, the Pharmaceutical Benefits Advisory Committee sets criteria for all medicines, and they've done that with this as well. Those criteria are already published.  

JOURNALIST: If people do have to travel into the city, obviously Australia's very vast, is that going to be still somewhat of a barrier? Yes, the financial burden has been alleviated. But people still have to travel distances. 

BEVC: Initially, it will be in main hospitals. But the potential is to get GPs informed and aware, and then move to local GPs. But that will take some time initially. 

JOURNALIST: Is that what you'll be calling on the government next - to expand the facilities in which you can have access to it? Because that's probably an issue that never seems to go away is having to travel for medicine. 


BEVC: At the moment most people with XLH travel to a major hospital, because we don’t have a specialist in rural areas, or they do the telehealth calls. So, it might be something that we need to look for in the future. 

JOURNALIST: With this being listed on the PBS, is it just going to make it cheaper for families? Or are we going to see a lot of people now gaining access to this medicine? 


BEVC: I think we're going to have a lot more people go for a formal diagnosis, be more aware, and also be able to afford the new treatment. 

JOURNALIST: So, are the hospitals in the system set up and ready to go? 

BEVC: I'm not sure yet, we're hoping that because it has been special access some hospitals already have access to the medication.  

JOURNALIST: Medibank breach, we’ve seen some pretty significant information leaked, you know, diagnoses and the like. What's your response to it firstly? 

MINISTER BUTLER: Obviously, this is a matter that is still underway. And I think the government has been pretty careful to make sure that we're not commenting inappropriately about a crime that is still being committed.  

We have some of our best people from the cybersecurity team at the Australian Signals Directorate and the AFP - the Federal Police, embedded in Medibank right now, dealing with what’ve we got is an ongoing crime being committed by these people.  

But obviously, there was a very great concern among some Medibank customers that their details have been breached and will potentially be released. And that's something Medibank is having to communicate with those customers about, and obviously something we're talking to Medibank about as well. 


JOURNALIST: Is there going to be any sort of review into what companies like Medibank – what type of information they should be holding, in terms of whether there should be access to that type of sensitive data? 


MINISTER BUTLER: Yeah, the Attorney-General's already talked about that this morning. I don't have anything to add about that. In addition to his announcements about increased penalties for serious and repeated breaches of privacy, he has also talked about a range of those measures, which will be dealt with in due course. 


JOURNALIST: And do you agree that companies if they do leak, or don't properly protect this sensitive information and data, should be heavily punished?   


MINISTER BUTLER: I think that's a matter of common sense. But I'm going to leave that to the Minister of Home Affairs and the Attorney-General who have carriage of those border cybersecurity and privacy questions for the government.  

JOURNALIST: On another topic, the opposition says the $100 billion dollar Budget injection announced yesterday, means we're now swimming in money and should offer new cost of living relief for Australians next week. Will you? 

MINISTER BUTLER: I've talked today about a very significant cost of living measure for millions of Australian patients, one that will help with their hip pocket and household budgets, cutting the cost of medicines, one that will pull inflationary pressure out of the economy because it will see a reduction in prices, and one which has that added benefit of improving public health, allowing people to continue to go to work and get about their lives. 

So, this is, as the Treasurer Jim Chalmers and the Finance Minister Katy Gallagher has said, is going to be a responsible, targeted Budget. In addition to what I've talked about in medicines, we will be delivering on our promises for cheaper child care, and a range of other responsible measures that we outlined in the election. 

JOURNALIST: And should Australians in regional areas be bracing for most of projects to be cut in next weeks’ Budget? 

MINISTER BUTLER: The Infrastructure Minister has addressed that in great detail over the last seven days and further detail will be released on Tuesday night. 

JOURNALIST: Just back to the cyber-attack, in regards to the Medicare numbers that have potentially been impacted in these breaches, what is the government doing? 


MINISTER BUTLER: We are obviously in close contact with Medibank. As I said, we've got some of our best cybersecurity people embedded in Medibank right now, to understand as best we can what data has been stolen and what is at risk.  And Medibank is, and should continue to be, in close contact with their customer base about what details may have been compromised. 


JOURNALIST: Given it’s so close to Labor’s first Budget under Prime Minister Albanese, do you believe that the balance is right from what you've seen so far? 

MINISTER BUTLER: This will be a very responsible Budget that delivers on our election commitments, that ensures that multinationals pay their fair share of tax, that starts to clean up the waste and the rorts that would become such a feature of particularly in Morrison era of Budgets, and deliver some of those policy priorities we talked about in the election campaign - Strengthening Medicare, cutting the cost of medicines, cutting the cost of child care.  

JOURNALIST: How much tougher is it going to get for Australians before it gets better? 


MINISTER BUTLER: The Treasurer has spoken very frankly and honestly, I think, about the nature of the economic headwinds that all economies around the world are facing right now, there is an inflationary environment of the type we haven't seen for probably three decades across the global economy.  


We're also seeing here in Australia the impact of natural disaster after natural disaster, which will not only cause extraordinary anguish and dislocation to those affected communities but will further fuel inflationary pressures in the economy.  


And on top of that, you've got things like the impact of the war on Ukraine. So, the Treasurer has tried to be as honest as we possibly can be with the Australian people that although there is a lot going well for Australia in terms of its own economic performance, there are substantial global headwinds and some domestic issues that we’re having to confront as well. 

JOURNALIST: Just on a local topic being at the state Labor convention today. And the Premier talking about his first seven months in office, how would you feel like the state government has gone? Given the first Labor state convention has somewhat been marred by a protest outside about the government not living up to its policies? 

MINISTER BUTLER: This is a Premier and a government here in South Australia that is delivering on the promises that they've made to the South Australian people. Whether that's in education, whether that's in health, or whether that's delivering the hydrogen energy project up on the Iron Triangle. What you get from Peter Malinauskas is a very clear statement of his vision for the future of South Australia. You got that in the election campaign, and then delivering on that platform.  

He’s doing it with a cabinet that brings an extraordinary blend of experience and energy, some of whom have substantial ministerial experience, and they’ve wasted no time at all getting on with the job and charting a path for the future of South Australia. I think they’ve done fantastically well. 

JOURNALIST: But in saying that as well, there was a protest outside this morning. Do you think the government would have had the view that they could have overegged their election commitments? Considering this some unions that are pleased and others that aren't? 

MINISTER BUTLER: I'm not going to get into the details of wage negotiations between the government and different sectors of the public sector. I'm just not across the detail of that and that’s a matter for them. 



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