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.