Press conference with Minister Butler, Adelaide – 13 November 2025

MARK BUTLER, MINISTER FOR HEALTH AND AGEING, MINISTER FOR DISABILITY AND THE NDIS: Thanks everyone for coming to the wonderful Western Hospital in the western suburbs. This is a very long way from Peter's home. He's had to drag himself out of the central business district, but welcome to the western suburbs, Peter, who you'll hear from later.
 
I'm delighted to be joined by a number of colleagues - Dr Angie Yong, who's a haematologist from Royal Adelaide Hospital, who we'll be hearing from later; Mark Henderson, who's the chief executive officer of Myeloma Australia that does such incredible work advocating for the several thousand Australians living with multiple myeloma. We're also going to hear from Peter Smith, who is a patient known as the Myeloma Miracle Man for reasons I'll talk about a little later.
Multiple myeloma is a rare, and as Dr Yong will say I'm sure, complex blood cancer. It impacts white blood cells in the bone marrow, and around 2,600 Australians are diagnosed every single year. The five-year survival rate, which we use as the metric for cancer survival, is only about one in two, and that survival rate has not improved for quite some years.
 
One of the reasons for that is that there has not been a new treatment on the PBS for more than 12 years. The principal recommended treatment is stem cell transplants for multiple myeloma. This is a very intense, rigorous treatment conducted in conjunction with chemotherapy, and I'm told for the majority of patients diagnosed with multiple myeloma, it's not a recommended treatment because of age or poor health or various other reasons. That's why the announcement we're making today is just so exciting. A new first-line treatment, an immunotherapy called Darzalex developed by Johnson & Johnson, will from 1 November be listed on the PBS at PBS prices.
 
Our government has been so focused on making medicines cheaper, getting those script prices down for general patients, freezing them for pensioners and concession cardholders. But for the PBS to retain its magic, we've got to continue to list cutting edge treatments, the best treatments from around the world at affordable prices. And in the 3.5 years we've been in government, we've made more than 350 new or amended listings to give Australian patients access to the world's best medicines, including, in this case, Darzalex. This is a medicine that attaches itself to a protein on the cancerous cells in the bone marrow and essentially provides a signal to the body's immune system to attack those cancer cells and hopefully destroy them. And I'm told one of the reasons why this listing is so exciting is that it will now be a first-line treatment for patients for whom a transplant, a stem cell transplant, is not recommended for those reasons I outlined. It being a first-line treatment is really important because that's when the immune system is still at its strongest and so going to be able to respond to the signals that Darzalex sends it.
 
This treatment is incredibly exciting. It provides very strong survival for patients, but it is very expensive. And so, without a PBS listing, this would cost patients around $440,000 for a course of treatment. We think 1300 or 1400 patients every year will be able to access this treatment as a first-line treatment at affordable PBS prices.
 
Before I hand over to our haematologist, Dr Angie Yong, I want to pay tribute to Myeloma Australia. This is an extraordinary advocacy organization. Mark's been running it for some time. He's got an amazing chair in Jeff Browne, the former chair of the Collingwood Football Club. We won't hold that against him. But other than that, a terrific advocate for patients with multiple myeloma. And we know of course the public story of Sandy Roberts, who has been a really important ambassador for this organization. I want to thank them for their patience. I want to thank them for the hard work, the hard evidence-based work they've conducted alongside Johnson & Johnson, with the government, with the various authorities, to make this day happen, to ensure now that hundreds and hundreds of patients every single year will have access to this new treatment, an exciting treatment, which gives them a really significant chance of years more of life.
 
I'll hand over now to Dr Yong.
 
Dr ANGIE YONG, ROYAL ADELAIDE HOSPITAL HAEMATOLOGIST: Thank you. Thanks for inviting me today. But really, multiple myeloma is an incurable blood cancer. There are treatments available, and a lot of patients go through multiple lines of treatment. So it's always relapsing. This takes a huge physical, psychological, and financial toll on patients. So, it's really good that we now have a treatment that can be used upfront to give the best response ever, and so that hopefully we can get sustained remission in patients and get them doing well for as long as possible. This is a big win for Australia. Thank you.
 
So, can I get Mark in now? Mark's CEO of Myeloma Australia and does a lot of advocacy work for us.

MARK HENDERSON, MYELOMA AUSTRALIA CEO: Thank you. Thank you, Angie. And again, equally, we're delighted to be here. We're delighted with the announcement today. We'll hear from Peter, and the reason why we go to work is for Peter and the 22,000 Australians living with myeloma. It is a hugely impactful disease. Twenty-seven per cent of the myeloma community will pass within 18 months. So the survival rate, as the Minister said, is just on 55 per cent. We're on this journey called the path to cure, and today's announcement is another step on that journey. We want to give our patient community the quality of life that they deserve.
 
And can I say to the Minister and those watching and to Peter, I got a phone call this morning from Sandy Roberts, and you could hear the delight and the energy in his voice when he's hearing about this new announcement. So, we're on a really exciting path. We thank the Albanese Government for their support, and we're going to keep working hard for people like you, Peter, on this cure for myeloma. Thank you.
 
PETER SMITH, MYELOMA SURVIVOR: Where do I start? I was one of the lucky ones who went to the doctor having my heart checked because I have a family history of heart problems. They discovered I had what they called smouldering multi myeloma, and quickly, it turned from smouldering to on fire. This trial was offered to me. I said I was happy to do it for two reasons. One, that was going to help me, and two, it was going to help other people. And certainly, it has. It certainly helped me. I’m, as I say, one of the lucky ones. I've been on it 10 years now. It’s had its moments of causing me a bit of angst, but generally speaking, it's been easy to handle. I haven't lost my hair, and I'm stable- what they call stable. So, it's been a long time, and I'm one of the survivors. Hopefully, I'll be a survivor for a lot longer.
 
JOURNALIST: Thank you, Peter. So when was your diagnosis?
 
SMITH: It was 10 years ago. Just bit before 10 years.
 
JOURNALIST: Wow. And how did it impact you?
 
SMITH: Well it didn't. I didn't know there was anything wrong and I gathered that most people don't know until they have blood tests and it was like four or five blood tests to confirm that, yes, you've got a problem. As I said the trial was offered and I'm a proactive person so I would- gung-ho as much as I could do.
 
JOURNALIST: How do you think this medication has changed your situation for you and your family?
 
SMITH: I'm still alive. [Laughs] That's the big thing. It's changed my life. It's given me life. So I'm very happy to continue. I said to my partner, I'm going to live until I’m 110. And he said, I hope you're not grumpy. I said, I'm grumpy now.
 
JOURNALIST: I guess in terms of the cost, the huge impact on your family to go through this, for it now to be on the PBS, that just must erase so much, I guess, concern and worry.
 
SMITH: It would have done for me, yes, had I not been on the trial because it's a very expensive treatment. But as I say, I was lucky enough to get on the trial and I'm very, very happy that it's is going to PBS and partly because of people like me who have been on the trial. So all I can hope is that they have the success I've had.
 
JOURNALIST: That's great, thank you Peter.
 
JOURNALIST: You're a pro. You should run for politics.
 
[Laughter]
 
SMITH: Thanks.
 
JOURNALIST: Perhaps some questions for the Minister? So obviously the trial's been going for 10 years. What's been, I guess, going on behind the scenes to get it on the PBS today?
 
BUTLER: The usual process really. The company makes a submission to the Pharmaceutical Benefits Advisory Committee, which is the committee of experts that assess a medicine for clinical effectiveness and then cost effectiveness as well. This is obviously a challenging medicine because of its cost. It's no orphan. A lot of medicines coming onto the market now are incredibly effective but also very expensive. It will be an assurance to taxpayers, of course that we're going through a proper process to ensure cost effectiveness and to get the right price.
 
The recommendation was given earlier this year by PBAC, the Pharmaceutical Benefits Advisory Committee, that Government should list this medicine. There are then negotiations around price that occur as a matter of course between the Government and the relevant company, in this case Johnson & Johnson. Mark might want to add to this, I think that the community, the myeloma community would say they would have liked this earlier. It is, to be frank about it, a case study in some of the challenges we have with our medicines assessment system, which is why I've asked for a rolling review to be conducted of the PBAC guidelines with a particular focus early on two issues that probably were at play here between the company and the government. That is the comparator, which is the question of what old medicine are you benchmarking the price against, and also the discount rate, which operates a little differently here compared to a jurisdiction like the UK.
 
I'm not pre-empting what might come of that, but I know cases like this that are very big investments by taxpayers in the lives of people like Peter. They're great investments, they've served this country so well over 80 years but they've got to be conducted carefully because this medicine is going to cost across 1300 or 1400 every year a very significant amount of money so we've got to get the details of the settlement right, but probably people in the medicines community, maybe patient groups, would say they want medicines a little more quickly than we've to get this onto the PBS. And I think they have a case, which is why I've asked for this rolling view to be conducted. Mark, do you want to add to that?
 
HENDERSON: Well, look, I agree. I was asked a very similar question this morning, and I said we'll always want it faster, we want it quicker, we want access for our patient community. But I must say we've had great interactions with people like the PBAC around the challenges of myeloma and that's been good. We're being heard, we're being listened to and I think I'd like to see an acceleration of those opportunities in the future. New technology is being brought to the fore for people like Peter and our community. And again, the community, we’ve seen an increase in diagnosis rates of around 30 per cent in the last few years, so there is an emerging need. So this is an important step for us.
 
JOURNALIST: All good. Just some questions on some other topics, Minister. The Productivity Commission has called for a complete rewrite of the National Mental Health Agreement in a scathing review, saying it's failing. How will the Government be responding and do you agree it's failing?
 
BUTLER: This is a pretty confronting report. It's no particular surprise to us because the relevant Productivity Commissioners came and gave a very comprehensive briefing to a meeting of all health ministers some months ago, outlined their conclusions after their review of the bilateral agreements between the Commonwealth and different state and territory governments around mental health and suicide prevention. And I've been pretty clear that, as a country, we've got to do better on mental health, particularly for those Australians who are living with complex and chronic or severe and chronic mental illness. As part of the agreements that we had with other jurisdictions, we conducted an analysis of unmet needs.
 
The number of people who weren't getting support really at all, shockingly, to everyone, that number came back to about 230,000 Australians living with severe and chronic mental illness, many of them psychotic disorders, who are getting essentially no support from state or Federal Government. I've been very clear, we've got to do better than that. And this is a very vulnerable group who, without support, will cycle through emergency departments, homelessness, often don't have functional relationships with family and friends. They end up in contact with the criminal justice system far more than the average person in the community.  This is a group we've got to do better for.
 
And as part of the National Cabinet a few years ago on health reform, there was a commitment by all Premiers, Chief Ministers and our Prime Minister to develop more foundational supports for two cohorts, the first being children under nine with mild to moderate development needs or autism with mild to moderate support needs, which we're working on right now through our Thriving Kids initiative. And then as a second cohort, this group with severe and complex mental illness.
 
I think all health ministers across jurisdictions recognise this as an important piece of work. We are required to renegotiate these bilateral agreements next year. We've got that work timetabled as a job of work for all health ministers and this Productivity Commission report will help guide that.
 
JOURNALIST: So is it fair to say that you agree that the system is failing right now?
 
BUTLER: The fact that there are almost a quarter of a million Australians with severe and complex chronic mental illness, that's not to count the number with more moderate needs, but the severe needs, mainly psychotic disorders, are getting very, very little or no support from governments at all, speaks for itself. We've extended our program for a couple of years, we've asked state governments to extend whatever they have in place right now for a couple of years to allow this work to continue.
 
We’re in very regular contact with mental health stakeholders who are worried about this cohort who do have severe needs but might not be picked up by the National Disability Insurance Scheme. And I see this as a really important piece of work. As a former mental health minister, this is one of the really important pieces of work for our second term government.
 
JOURNALIST: The ABC has analysed public specialist waiting lists and has found some people here in your own state of South Australia are waiting six years to see crucial specialists like neurologists. Is that acceptable?
 
BUTLER: Again, six years to wait to see a specialist speaks for itself. No one should wait for that length of time. Our job as a Commonwealth is to do all we can to get more doctors into the system, the health system broadly, whether that's state public hospital systems or private systems. We've been doing a good job of that, I think over the last couple of years we've added almost 18,000 doctors to our medical workforce, which is the biggest number in well over a decade.
 
We've got more to do, though. There are areas of specialty that are still short. I've talked a lot about the need for more GPs in our system, but there are areas of non-GP specialty where we're short as well. A psychiatrist is one but there are others as well. We're doing what we can to get more doctors into the system, to train more Australians as doctors, expanding medical school places. We're also frankly making it easier for systems to recruit overseas-trained doctors, particularly from jurisdictions where we have high confidence in their training systems like the UK, Ireland, New Zealand, Canada and such like.
 
But as for waiting lists via state hospital systems, you’re really going to have to ask state ministers about that. Frankly in some jurisdictions there's not a lot of transparency around those waiting lists. And I think as a Commonwealth for some years now, we have been arguing for more transparency around that so that we know what gaps there are in the system and we can help plug those gaps with additional medical specialists.
 
JOURNALIST: Minister, some experts have suggested the Commonwealth should take over public specialist outpatient clinics and fund 100 per cent of them. Is that something that you'd ever consider?
 
BUTLER: There was a negotiation around something like that, which is a pretty radical change to the way in which the division of responsibility is in health work. There was a negotiation around the possibility of that I remember when I was very much first in the health portfolio under Prime Minister Rudd, that didn't go anywhere with state governments. They had no interest at that time in negotiating around those sorts of changes. So really, the responsibility for public hospital outpatient services remains with state governments.
 
We're in the process of negotiating a new hospital funding arrangement with states and territories right now. There will be further meetings tomorrow between officials to try and progress those negotiations. In the meantime, we've increased hospital funding this year very substantially. In South Australia's case, this year there's a 15 per cent increase in hospital funding compared to last year from the Commonwealth, the biggest increase I imagine anyone can remember. We are doing our bit, we're putting more money on the table, we're trying to get more medical specialists into the system right across the system, public and private. But there is increasing demand for hospital services, and I know state governments, state health ministers, including here in South Australia are working hard to try and keep up with that demand.
 
JOURNALIST: Melbourne's Peter MacCallum Cancer Centre has handed the government a proposal to buy and operate a proton therapy unit. A lot of South Australians will be thinking, what does this mean for Adelaide's proton therapy unit?
 
BUTLER: Adelaide's proton therapy unit, which was an agreement essentially struck between the last state and federal governments, is not going to be able to be delivered. I'll try to be frank about that, but the company that was contracted by the then Turnbull government and Marshall government to deliver what was going to be the country's first proton therapy unit is simply not able to deliver it, and I think in hindsight was probably not the company to contract with. It had only delivered one unit, as far as I'm aware, anywhere on the planet, and that was essentially a research-based unit at the MIT, I think from memory, in the US. Very heavily dependent on Russian supplies, which has obviously been a problem since Russia's immoral, illegal invasion of Ukraine given the sanctions there.
 
This is simply not a deal that's been able to be delivered, and frankly we've lost significant taxpayer dollars because of that deal, but more importantly we've lost a capability, we've lost years in developing a capability Australia should have, particularly to care for children with cancer. We know what a benefit proton therapy is for children with certain types of cancer.
 
I'm working through this, including with South Australia, and it's not just that we've sunk some capital here in the building at the bottom of the Bragg Centre on North Terrace, there's also significant human capital that has shifted to Adelaide, in some cases from overseas, on the promise that there would be a terrific service here in South Australia. I'm working through this issue. I want to make sure that we get this right next time; we don't repeat the mistakes that were made by those previous governments, because this is an important capability. I want to work through this with South Australia to see whether they have a viable proposal to resurrect their ambitions to have a therapy unit here. But frankly, if not, we're going to have to go to other jurisdictions, because this is not going to be a South Australian service or a Victorian service, this is going to be a national service.
 
The advice I got from Cancer Australia is that for some years at least, there will only be a level of demand in Australia sufficient for one unit. Maybe into the 2030s we'll need a second unit, but wherever it is in whichever city it is, this will be a national capability, not a South Australian capability or Victorian capability. So we've just got to make sure we get it in the right place with the right clinical capability.
 
JOURNALIST: You said you don't want to repeat those mistakes. Would you say that those mistakes are, as you mentioned, the provider of this unit? Was there any other issues with, say, how the project was managed or anything else like that?
 
BUTLER: The big glaring mistake, and I say this with the benefit of hindsight, was that the company contracted has not been able to deliver. And at the time it was contracted, it did not have a record of delivering these units around the world, except as I say for one, as I understand it, which was really a research-based unit rather than a full clinical service.