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