Monday, 11 September 2023
Private Members' Business
Diffuse Intrinsic Pontine Glioma
That this House:
(2) recognises that:
(a) DIPG causes more childhood deaths than any other disease;
(b) just ten per cent of patients survive two years, and less than one per cent survive five years;
(c) DIPG is one of the only cancers for which there are no effective systematic therapies;
(d) DIPG typically strikes in the middle of childhood, peaking around five to seven years of age;
(e) each year, 20 to 25 Australian children are diagnosed with DIPG and pass away within 12 months; and
(f) Australia is in a unique position to improve outcomes for DIPG patients, since we are regarded internationally as one of the world's leaders in DIPG research;
(3) further acknowledges that the Kids Cancer Centre at the Sydney Children's Hospital estimates that an injection of $25 million specific for DIPG research is needed; and
(4) calls on the Minister for Health and Aged Care to allocate funding from the $20 billion Medical Research Future Fund.
I am moving this important private members motion because I am still in shock about the devastating childhood cancer that causes more deaths in our precious young Australians than any other disease. Diffuse intrinsic pontine glioma, or DIPG, is a brain tumour with no treatment and a 100 per cent mortality rate. Patients typically survive a matter of months following diagnosis. One child develops this dreadful disease every two weeks. Just 10 per cent of patients survive two years, and less than one per cent survive five years.
This month I met with Beau and Terry Kemp who told me of their harrowing story of losing their beautiful son, Ryley, at just eight years of age. Their story is heartbreaking and, sadly, not unique. When I met with the Kemps, I also met with Professor Matt Dun. Matt is a medical biochemist. He is Professor of Paediatric Haematology and Oncology Research in the University of Newcastle, Australia, and a deputy director of the Hunter Medical Research Institute Precision Medicine Research Program. Matt is also the founder and director of RUN DIPG, a charity dedicated to improving outcomes for patients impacted by this awful disease and their families. Matt lost his own daughter to DIPG in 2018, and I'm sure it feels like yesterday for Matt and his family.
I have a folder on my desk full of stories from other DIPG families. As a parent and grandparent, I find they are incredibly hard to read and impossible to read without tears. Matt told me that, when his daughter was diagnosed, he and his wife were told, 'Go home and make memories.' Imagine being told that about your child. Matt is committed to researching this disease until that advice is no longer the standard line given to families. That research requires investment. The previous coalition government invested $970,000 in medical research for DIPG, but there has been no direct federal government funding since then. By comparison, leukaemia research has received $140 million since 2014, and you need only look at the survival rates of children with that disease and how they have improved over the years to know how essential investment in research is. RUN DIPG have asked for just $10 million from Australia's $20 billion Medical Research Future Fund, while the Kids Cancer Centre at the Sydney Children's Hospital estimates that an injection of $25 million specific to DIPG research is needed. They are hoping for recurrent funding until mortality rates improve.
Australia is already recognised as a world leader in DIPG research. A miracle is needed, and research investment is the key. In this chamber, we must make every effort to ensure that there is hope and that miracles can begin to occur. I am committed to supporting these wonderful parents, and I call on the health minister, Mark Butler, to do the same. As yet, he has not met with DIPG advocates, despite their many requests. I wrote to Minister Butler after meeting the Kemps, urging him to activate funding under the MRFF for DIPG. The minister did not even have the grace to respond directly; a reply was given by his chief of staff. The response did nothing to address the need for direct research into DIPG. The minister's chief of staff advised that there is an open and competitive grant opportunity where RUN DIPG could partner with other brain cancer researchers, yet we all know that the minister could activate discretionary funding. The funding sought by RUN DIPG and the Kids Cancer Centre would, relatively speaking, be a drop in the ocean. These parents need hope.
I have put up this motion today because we are charged as representatives in this great parliament with shaping positive outcomes for all Australians. I am heartened to hear, on the day I'm moving this motion, that Minister Butler is at last scheduled to meet with RUN DIPG this week. As we approach Childhood Brain Cancer Awareness Day on 26 September, I hope the minister commits to funding this vital research.
I'd like to thank my colleague for raising this important private member's motion. In the course of my career as a medical practitioner, I often had to break bad news. It was never easy, and it was an almost daily event. Of course, in my practice, that breaking of bad news was for adult patients and their families, and it would often occur in the context of finding a small room, often no bigger than a broom closet, sitting people down with a box of tissues and telling them what was going to happen—if I was lucky. Very often, it would happen in the halls of a busy hospital in the corridors, holding up the walls essentially, as people went by and alarms were buzzing—completely suboptimal. On no occasion were those conversations easy, I must say. But I've got to say that in many cases there was a glimmer of hope, because, when adults get cancers, there are often treatments and survival is not an unreasonable prospect to give people—the exception being when the cancer is just too far gone and has spread. I can only imagine how much harder this conversation must be for families and the parents of children who develop cancer.
Brain cancer is a shocking disease. There are about 1,900 cases of brain cancer in Australia. Of that 1,900, 120 cancers affect children. The five-year survival rate overall from brain cancer has really not shifted much in the last 30 years. It sits at around 20 per cent for the whole cohort, adults and children. However, within the group of childhood brain cancers, there is one particular cancer, DIPG, diffuse intrinsic pontine glioma, which has also been renamed diffuse midline glioma, that has a zero survival rate. There are very, very few cancers that, hand on heart, are this aggressive. It is a hypervirulent and hypermalignant tumour. It robs children of their movement and their ability to coordinate. It robs them of their basic functions, the ability to swallow, to speak and to move their eyes, which means communication becomes almost impossible in the terminal stages of their lives. It also affects their basic automatic functions, like breathing, blood pressure, heart rate and sleep. In effect, these children become locked in, because their higher functions, their consciousness, are still in operation. It is an awful, awful disease. It is aggressive. It starts in the brain stem and then it spreads throughout the brain, up and down the brain stem.
DIPG, as I have said, is a high-grade malignancy, and in terms of treatment it is largely palliative. It is radiotherapy. But that only extends life for a short period of time until the inevitable occurs. The reason brain cancers are so hard to manage is that the brain is considered a sanctuary site. It is protected by a blood-brain barrier, and it's actually very difficult for drugs to get through this barrier to the target site.
What is clear is that we need much better research in this field, and I am with my colleague in saying that when you're faced with something of this magnitude, with such terrible outcomes, the only pathway forward is through research. I was reading about Levi's Project, a project brought forward by two parents, Ben and Kath, in tribute of their eight-year-old son, Levi, who died in 2019 of DIPG. This family, through their grief, mobilised and have raised over $4 million towards brain cancer research. There is currently an immunotherapy trial, called the CAR T immunotherapy trial, being run out of Sydney Children's Hospital, Randwick, which is available to all children in Australia. We need efforts like this to be multiplied many times over.
I'm pleased to say that our government has contributed $136.6 million towards the Australian Brain Cancer Mission to support research into brain cancer. This is on top of initiatives such as the $100 million Zero Childhood Cancer program, $100 million to establish the Minderoo Children's Comprehensive Cancer Centre and $750 million which has gone towards clinical trials, largely in rare diseases and rare cancers, where we desperately need more guidance as clinicians. There is much more to do. We realise that this is also something that governments of both persuasions must invest in for the long term, because research is the long game. It can often take many decades before it yields outcomes, but we must stay the course.
I thank the member for Mallee for bringing this important motion to the House. I too acknowledge the need to invest more into diffuse intrinsic pontine glioma. I acknowledge the contribution we've just heard from the member for Higgins, and I appreciate her background and knowledge that she brings into this place on issues such as this.
I've got to admit that, until I was approached by the member for Mallee, this wasn't a cancer I was aware of. It reinforces why it is important to bring these private members' motions into the House. Not only is it important to reinforce the message to the government of the day, in terms of the importance of research and the anecdotes that members can bring about these things, but it also helps to broaden the understanding and awareness of something that's clearly a critical issue.
As we've heard, DIPG is a very aggressive childhood brain cancer. It develops in the brain stem, striking children in the middle of childhood, with diagnosis typically around the age of five to seven. Tragically, at this stage there is no cure. It is the most aggressive of all childhood cancers, and it's the primary cause of death amongst paediatric brain tumours. Due to the location of the tumour, removal by surgery is not possible. Patients do not respond to chemotherapy and radiotherapy; care is palliative only. You can only imagine the heartache of having a child diagnosed with this and understanding that all you can do is help the child through to the end of their life at such an early age.
I've been in this place now for quite a number of years, and we have seen a turnaround in other cancers. We've seen research with immunotherapy now for melanoma, and melanoma is not the death sentence that it was. Not everyone responds to immunotherapy, but a large proportion of people do, and I personally know people who are alive today because of improvements in immunotherapy for melanoma. The breast cancer survival rate is also now much higher, largely due to the research. I remember a couple of years ago meeting a group, in the Mural Hall here, who were lobbying for research into rare cancers. Sadly, when they held the meeting the following year, the young lady that I spoke to had already passed away. So it is important that these harder, more deadly cancers are focused on in our research.
A lot of the research happens in the capital cities, but I'd like to make the House aware of some work that's happening in my part of the world, championed by Samuel Johnson from the Love Your Sister charity. Samuel's charity has raised about $20 million over the years. They're doing funding trials now—in conjunction with Macquarie University, the Western Cancer Centre Dubbo and the Royal Flying Doctor Service—in precision medicine with regard to cancer treatment. I'm sitting here looking at medical professionals—and I'm no medical professional—but it was explained to me that not all cancers are the same and that the sooner the individual make-up of a cancer is diagnosed the more precise the treatment can be. This trial will be not only in Dubbo but also in other centres—even the small community of Brewarrina and some of the more western towns. Upon diagnosis, a sample is taken and grown—I believe—in a lab. An identification of this cancer is made and, therefore, the treatment can be better targeted.
So we do know that incredible progress can be made. The families that have children diagnosed with diffuse intrinsic pontine glioma will be hanging onto hope that future breakthroughs will help their children survive this disease. I strongly support this motion.
Investing in medical research and health care is a top priority of our government. Over this government's term in office, we have invested record amounts in improving access to health care right across the nation. Take, for example, the government's Medical Research Future Fund, the MRFF, which is a $20 billion long-term investment supporting Australian health and medical research. What the MRFF aims to do is transform health and medical research and innovation to improve the lives of all Australians and build the economy and contribute to the health system's sustainability. The federal government now uses the interest from this investment to pay for medical research initiatives and innovation right across the country. It is so important for Australians, as we all benefit from life-changing discoveries. It helps our researchers develop their ideas domestically and supports Australia's growing biotech industry, creating future jobs and exports, while also building stronger relationships between researchers, healthcare professionals, governments and the community.
Where our investment in medical research is directly benefiting Australians is those children who are diagnosed with malignancy, with cancer. In Australia, brain cancer is a leading cause of death of children. Today, we are speaking on the motion moved by the member for Mallee on diffuse intrinsic pontine glioma, or DIPG. I will go into what that is. We know that those brainstem gliomas are heterogeneous in their activity. Activity ranges from low-range tumours to more rapidly fatal, aggressive disease of which DIPG is one. Prognosis and treatment often depends on the severity of those symptoms, their duration and the location of the tumour within the brainstem itself. From the title of this disease, we know it originates in the pons, which is a part of the brainstem, so the lower brain. Approximately 80 per cent of the midline gliomas occur within that section of the brainstem. The diffuse intrinsic pontine gliomas are usually quite high-grade, are locally infiltrative and have a uniformly poor diagnosis amongst our paediatric patients.
The symptoms are varied. I know the member for Higgins went into detail about some of the symptoms. With this form of malignancy, we can get cranial nerve palsies, which are the nerves exiting the brain which control a lot of the function in the head and neck; long tract signs, things like hemiparesis where part of the body won't be able to move, affecting a child's mobility; hydrocephalus, which is water on the brain, increased pressure on the brain; and also bleeding within the tumour. All of these can lead to poor prognosis of the children who are suffering from this absolutely terrible, terrible disease.
I'm pleased to be part of a government that's working collaboratively with the New South Wales government to invest in further breakthrough research in children's cancer so that one day we can live in a world—not just here in Australia but across the world—where we can cure cancers diagnosed in children. To reach this vision, the federal government has invested $100 million towards the Children's Comprehensive Cancer Centre at the Sydney Children's Hospital in Randwick, and this collaboration between the federal, the New South Wales government and the Children's Cancer Institute aims to strengthen research and support 500 researchers and clinicians work on the challenge of paediatric cancer. This cancer centre is going to train our brightest minds in the vital quest to advance the treatment and prevention of childhood cancers. It will be like none other in Australia. It will be a fully integrated cancer centre, combining world-leading clinical care with groundbreaking research and education to change the face of paediatric cancer. It's said that this centre is going to be operational by 2025.
We've also invested $99 million towards 29 research grants focused on childhood cancers through the returns from the MRFF, and $60 million of this investment is going to the Zero Childhood Cancer Program, a world-leading precision medicine program. This program uses the latest technology to screen cancers and search for drugs that can target them.
Again, I want to thank the member for raising this important issue. It's important that we really shine some light on this area. And I thank the other members for their contributions.
It's appropriate that we're having this discussion this month, given that September is Childhood Cancer Awareness Month. It's an appropriate time for us to note the sad burden of childhood brain cancer, particularly diffuse intrinsic pontine glioma, or DIPG.
Every year 20 Australian children, usually aged between four and 11 years, are diagnosed with DIPG. 'Diffuse' means the tumours are not well contained. They develop in a part of the brain called the pons, which is responsible for a number of important bodily functions like breathing, sleeping, bladder control and balance. It's impossible to remove these tumours without damaging healthy tissue. Children with DIPG present with a short history of symptoms like facial weakness, headache, balance problems or squint.
As a paediatric neurologist, I can tell you what it is like, as can my colleague the member for Macarthur, to see a child in the emergency department with these symptoms, to talk to them, to examine them, to talk with their parents, to establish a rapport and to establish an assessment plan and then send them to the scanner. Then you sit in the radiology department waiting for images of the scan to appear. The hope is always that the symptoms are post-viral. When the images appear and it's a tumour, your heart sinks. It's like being kicked in the chest. When it's a DIPG, you go through the scans in detail, you talk to the radiologist and then, with sadness, you go to talk to the parents, knowing the conversation is going to change their lives forever.
There are no effective treatments for DIPG. The tumours can't be removed surgically and don't respond to chemotherapy or radiotherapy. Our treatment is, at this point, essentially palliative. The average survival period is nine to 12 months. DIPG claims the life of an Australian child every two weeks. Recently I met with several families who travelled to Canberra to share their stories of DIPG and advocate for federal investment into research and therapies for this disorder. Their stories were characterised by overwhelming grief, loss and pain.
Our medical research funding system spans five federal portfolios as well as philanthropic and private enterprise. We have challenges in optimising research allocation and ensuring equity in different areas and parts of the economy. Medical research funding in Australia should be based on the Commonwealth Grants Rules and Guidelines. It should be effective, efficient, economic and ethical. Unfortunately, medical research funding in this country has been subverted and politicised in recent years. Concerns were raised around allocations from the MRFF from the time of its inception in 2014. By 2020, 65 per cent of MRFF funding was noncompetitive.
The current proposal for a national strategy for health and medical research was informed by 15 years of health and medical research reviews, but we still don't have a clear picture of where the gaps and duplications lie. We need a comprehensive review of the Australian research landscape, highlighting priorities for investment to propel our progress as a kick-off point for a transparent and clear road map for more effective research funding allocation and grants administration.
Our medical research should have a patient centred approach in which researchers engage with patients and incorporate their experiences and insights into research which is impactful and which responds to real-world challenges. These reforms also have to produce funding models which are both accountable and transparent, with clear aims and with regular review of the progress and outcomes.
Only $970,000 has been allocated to research into DIPG in this country since 2015, even though we have some world-leading researchers in this area—$970,000 to a cancer which kills one Australian child every two weeks. In Childhood Cancer Awareness Month, I call on the Albanese government to commit to a national strategy for health and medical research in which we can have confidence in the transparency and integrity of medical research funding in this country, in where it goes and in how it will improve health outcomes for all Australians.
I thank my friend and colleague the member for Mallee for moving this motion. I'm very proud to inform the House that the member for Mallee and myself are equally committed to working together and with our fellow parliamentarians to promote better outcomes and understanding of childhood cancer. We've recently established the Parliamentary Friends of Childhood Cancer Cure, and we are planning to have the DIPG support group to Canberra to present to the greater parliament their concerns. We certainly do sympathise with them and understand their needs.
I would also like to thank my other medical colleagues, including the member for Robertson and, of course, the member for Kooyong, for their input into this motion as well as the others who have spoken. I note that the member for Kooyong, in her previous life, dealt with some of the most terrible disorders of childhood, including DIPG, in her role as paediatric neurologist, and I pay tribute to her for that.
As a paediatrician, I've certainly looked after kids with DIPG. It's a terrible, harrowing illness from presentation to death, and it's pretty much a 100 per cent death rate at the present time. I remember, in my first days as a resident in North Shore Hospital, they had one of the first CT scanners in Australia. One of the patients we looked at was a seven-year-old girl who presented with double vision, who did have in fact a pontine glioma and who died fairly quickly after it. That was over 40 years ago, and I'm afraid the prognosis is changed very little in that time, very sadly.
As has already been mentioned, the presentation can initially be with mild symptoms—headache, some vomiting, double vision, facial weakness—but pretty rapidly progresses. There's no effective treatment. Radiotherapy is essentially palliative, and death is often pretty quick. That is a really shocking experience for parents, for families, for clinicians and all the staff that look after these children. It is a terrible disease.
Up until recently, there was really little hope, but there are some things that are changing. In particular, the initiative, the Zero Childhood Cancer group from Sydney Children's Hospital and the University of New South Wales, led by Michelle Haber, is doing some wonderful work with cancer genomics as part of the broader prospect trial, jointly funded by state and federal governments. We hope with this and the advances in genomic medicine there will be better treatments, and we hope there will eventually be a cure. But, of course, as the member for Kooyong and the member for Robertson have noted, this requires investment in early diagnosis, in early investigation and in research. Of course, we are, as the government, committed to that, and I think governments of all persuasions in the last 20 or 30 years have been committed to looking for cures for some of the most devastating cancers, not just in childhood but in adult life as well, and we are slowly making progress. There are much better genetically targeted treatments for childhood cancers. The prognosis for many of those childhood cancers is changing dramatically.
My friend and colleague, Glenn Marshall, who's in parliament today, is a paediatric oncologist who has identified the genomic markers for one of the most devastating tumours of childhood, neuroblastoma, and we hope that similar advances will lead to better treatments for things like DIPG.
Our government has invested lots of money into childhood cancer programs, the Zero Childhood Cancer program being part of that, but more needs to be done. I agree—we need to look where their deficiencies are, and our medical research funding needs to be better targeted than it has been. I know the minister for health is certainly looking into this. We are routinely reminded that our children are our future, and we need to do more in terms of investment in research for some of these rare children's cancers.