Monday, 11 September 2023
Private Members' Business
Diffuse Intrinsic Pontine Glioma
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.