Press conference with Minister Butler, Melbourne – 9 September 2025

MARK BUTLER, MINISTER FOR HEALTH AND AGEING, MINISTER FOR DISABILITY AND THE NDIS: Thanks everyone for coming along here. It's such a terrific honour to be here at the Brain Centre next to the great Austin Hospital in Melbourne to just get an update on a really exciting project that Graeme and William will talk about in very personal ways. But I want to talk about as an exemplar of the Medical Research Future Fund, because right now we're celebrating the 10th anniversary of this fund that was established in 2015, and I think it's worth saying a few words about what the fund has contributed to Australia's already extraordinary health and medical research ecosystem.
 
The Medical Research Future Fund was born essentially out of a review that Simon McKeon undertook about health and medical research system, after I asked him to do that as the Minister responsible back in 2011. Simon was Australian of the Year that year, chair of the CSIRO and brought together a group of very eminent Australians to look at ways in which we could continue to build our extraordinary record in health and medical research that really extended back to the 1930s when the National Health and Medical Research Council was first formed back in that pre-war period.
 
Essentially, Simon's conclusion of his review was that we needed to build a capital fund that would secure more sustainable, larger funding for our health and medical research sector, and also that we needed the ability to drive research funding into areas identified as health priorities rather than just relying on the very successful but particularly sort of focused area of investigator initiated research that really is the hallmark of the National Health and Medical Research Council system. And the MRFF really delivers those 2 things.
 
We now have a capital fund of more than $20 billion in the MRFF, and it means that every year, $650 million additional dollars are put into health and medical research. I think from memory, when I asked the McKeon Review to start its work, total health and medical research funding through the NHMRC amounted to about $650 million a bit over a decade ago. It is now $1.5 billion, so close to 2-and-a-half times what we were investing in health and medical research only a little more than a decade ago.
 
But it's not just the dollars that are making a difference, it's that ability to have a system that is truly investigated or initiated through the NHMRC combined with the priority-driven research focus of the MRFF, and this project is an exemplar. It's part of the Frontier mission, it's the biggest single investment ever in epilepsy research in Australia and it's already making a huge difference to the lives of people like William, who will talk about his personal experiences. A $30 million investment through the Frontier mission to establish the Australian Epilepsy Project. And I've been so excited to hear more about what it is doing to develop really what will become standard care if it's not already for patients with epilepsy, and there are maybe 150,000 or so of them in Australia.
 
Obviously, I'm really excited to hear more about what this project is doing for this particular area, namely epilepsy, but I think we'll learn so much more from this project to be used beyond in other disease areas. Its use of AI really is quite cutting edge. Its focus on developing optimal care pathways for patients that aren't just a cookie cutter approach but really look at what particular characteristics a patient's epilepsy has, again, is a really important lesson for other parts of the healthcare system.
 
Ten years on from the MRFF, it is worth celebrating what it has delivered to our system. There's more that can be done, and Graeme was just talking to me as we were walking up to the microphone about the next reform challenge for projects like this and others that have received substantial funding from the MRFF. But let us take a moment, Graeme, to celebrate the success of the MRFF and a project like this one that I know has a long way to go but already is making a real difference. I'll hand over now to Graeme.
 
PROFESSOR GRAEME JACKSON, CHIEF INVESTIGATOR, AUSTRALIAN EPILEPSY PROJECT: Thank you, Minister. We're really sitting here at a time of change like I don't think we've ever seen before with the technologies that are arriving. The artificial intelligence, data sciences and the opportunity to scale expertise to a population. We've never had that before and we're going to see rapid change in society, but in particular in medical research. We've been fortunate to have been ahead of that wave, if you like. We saw this coming in 5 years ago. Thank you to many of the people who helped develop this.
 
We developed a platform approach to health care in epilepsy with the aim of developing that for all brain diseases, and the elements of that are really a massive change in how health care is delivered. I'm a neurologist and I've worked in hospitals, and often that means I focus on the severe end of disease. It's very clear that we have to also focus on the beginning of disease because that's a better place to intervene. But to do that, as a neurologist like me, I didn't really see those patients. They stay in the community until they are a big problem, and then they get to care either in a hospital or in a practice.
 
The problem is, if we do this, we can't scale expertise to rural and regional and to the whole population in a standard way unless we use AI and these digital processes. The idea is to identify these people, apply the advanced technologies at the beginning, get them on an early pathway for optimal care, sometimes that includes surgery, and people can then live the best life they can with epilepsy rather than many, many years where they're not certain whether they've got the best care or not.
 
We really do think we're in the era where health care has to change. We can't afford chronic diseases and an ageing population to be treated in little silos of a single practice or a postcode hospital. Technology is going to change how we do that. It will make everyone more efficient. It will get places like hospitals and neurologists able to identify many more patients that they can apply their expertise to.
 
I've got to thank the government, and the Medical Research Future Fund has been an absolutely amazing innovation. We were very fortunate to get selected in the Early Frontiers Grant. Hopefully, that was based on merit, and what we've been able to do is take 30 years of Florey research. We had all of these technologies of understanding the brain, and they weren't being used in practice because a big barrier for people to get that working in a hospital. We've taken the approach of taking all of these advanced technologies in a project like this so that we can really understand the brain a lot better and work out what we can do to make a change.
 
With all of that technology applied to brain function and structure, dynamics, how it works, we really have an opportunity to make an impact in all areas of brain health with a platform technology that underpins that. I wouldn't underestimate the change to platform technologies that work at population scale. We're 4 years in, we think we've already established a massive change. We celebrate 1,000 reports we put out to neurologists that should inform care. And we've built a database that is going to allow us to start predicting outcome at a much earlier stage because we've standardised the way we've accessed, and we've applied data.
 
I think the future’s great. We're one of many projects that are really going to take it from all the research environment where it often gets forgotten or goes overseas to get developed, and the MRFF has given us a chance at that scale required to take it to the next step of implementation. It's been an exciting ride, it's been exciting to be part of it and it's been innovative. The future, as I said to the Minister, is getting rid of the blocks and the bureaucracy and the pace at which some things go so that the implementation can take advantage of it because it’s sucked up elsewhere. So yeah, that's great.
 
I'll introduce Will. Will was one of the people who joined the program very early.
 
WILLIAM CAMPBELL: Sure. Around 13 or 14, I started having what I now know to be seizures, but at the time, we just thought we called them dizzy spells. And they persisted. We went to GPs. They hooked me up for heart monitoring. They hooked me up in hospital stays where they ultrasounded various parts of my body and chest. No one thought it was a neurological issue. These kept happening. Sort of dropped off the radar of the medical system at that point, and I just learned to accept them as part of life.
 
When I was in my early 20s, these dizzy episodes started to increase. They started to increase in severity as well. I started to learn that I was doing things that I don't remember, that I didn't experience at the time. I thought, okay, I should probably start the road again, start trying to get checked out. Went to my GP, asked him, got put in contact with a psychiatrist. I even had a seizure in front of a psychologist. Nobody knew what this was. It was only when two of my friends, who were healthcare trained, saw me have a seizure that I could put a word to this. I went online and looked through the different descriptions of all these different types of epilepsy. There were so many different kinds that I didn't realise because my understanding of epilepsy was a very common stereotypical understanding, which was you drop to the floor, you have convulsive seizures, maybe it'll be brought on by flashing lights. That's not the way my epilepsy presented at all.
 
I went back to my GP. I asked to be put in contact with an epilepsy specialist. And finally, that's when I got to see my neurologist, Dr Moksh Sethi, who has actually been part of the research here at the AEP. After one interview, one consultation, just hearing my story, he said, this is a textbook case. You have temporal lobe epilepsy. It's the most common form of epilepsy. You can be on medication. He said you should get checked out by the Australian Epilepsy Project. They have a fantastic scanner. They have a research brain MRI scanner that you won't get access to anywhere else, so I went in. I started doing neuropsychological evaluation. I was put in the scanner and, lo and behold, looking at the images, there's a lesion in my brain. It could identify exactly where it was, exactly what was expected based on the kind of symptoms I'd been experiencing. This is a perfect story fitting together what I was experiencing that I hadn't got before.
 
Then fast forward 3 or 4 years, I'd been trying different medications, none of them had been working, but turns out I'd become a perfect candidate for surgical intervention. The appointments were set up. It was done fully in the public system. And last November, I was operated on. I had a piece of my brain removed, the brain that was not doing me any good, causing my seizures. And since then, I've gone from having 1 to 5 seizures a day to zero. I haven't had a single seizure in 10 months. I just think that's incredible, that the rest of my life, my personality, my mental acumen, cognitive abilities, to my knowledge, to my understanding, completely the same. I've just stopped having seizures. This is the magic of the 21st century. I thought I want to be involved in that. I thought I want to be a part of what's happening here. In 2 weeks, I have an interview at a medical school, and I really hope to be helping people that have experienced what I have. Hopefully helping people that have gone from having their first seizure to seeing a neurologist to getting treatment in less time than I did. But honestly, on the scale of things, I was a person who got relatively early intervention. My friend Amanda here spent a lot longer having seizures before she got treatment. It was 20 years. I just want to thank Professor Graeme, I want to thank my neurologist, and I want to thank everyone that's been working to carry out the Australian Epilepsy Project.

JOURNALIST: How many people have received what they need from this research and funding?
 
BUTLER: I'll ask Graeme to add up. My understanding is 1,400 patients so far.
 
JACKSON: 1,600. It's growing fast now.
 
BUTLER: Growing fast, and it's still growing every single day. Graeme, why don’t you answer that?
 
JACKSON: Yeah. In the Australian Epilepsy Project, we've had 1,600 or more referrals. We're now operating in all Australian mainland states. And it's one visit and then all the rest is done online, and it can be done anywhere, all the regions. One of the points is to find all the people we can help like this. There's a lot of them that don't come to postcodes when they get this opportunity.
 
JOURNALIST: The ABC's reported that Australians from SuperCare Dental Clinic have had to use their super to pay for work, and they're now left with little super and no service. What's your response? And does the government need to re-examine the rules around early access to super?
 
BUTLER: This is not something governed in the health portfolio, but obviously, it's something I'm deeply concerned about, that people might be encouraged to dip into their superannuation for health care of one type or another. It's really important that people take advice, independent advice, about whether or not early access to superannuation is warranted given the particular treatment that is on offer. But I've read these reports, and I'm concerned about them. If anyone's worried about the way in which they’re being urged to dip into their super and whether that's appropriate, they should be reporting that to the tax office. Thanks, everyone.