Anne Webster (Mallee, National Party, Shadow Assistant Minister for Regional Health) Share this | Link to this | Hansard source

I rise to speak about a 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, tragically, no treatment. Patients typically survive for a matter of months following diagnosis. Just 10 per cent of patients survive for two years, and less than one per cent survive for five years.

We all have families: we are mothers, grandmothers, fathers, grandfathers, brothers, sisters and cousins. Most of us know what it's like to lose a loved one, but what if that person has barely had a chance to live? Last week I met with Beau and Terry Kemp, who told me their harrowing story of losing their only son, Ryley, five months ago at just eight years of age. Their story is just heartbreaking, and for them to be sitting in my suite and talking so candidly is a testament to their strength.

We have no cure for this terrifying disease, but that does not mean we should not be investing in this research. Between 2014 and 2018, the government funded $970,000 allocated to DIPG for medical research. But there has been absolutely no funding since. By comparison, leukaemia has had $140 million allocated since 2014. We only need to look at the survival rates of children with that disease and how they have improved over the years to know how valuable investment in research is.

While meeting with the Kemps, I also had the pleasure of speaking with Professor Matt Dunn. Professor Dunn is a medical biochemist and professor of paediatric haematology and oncology research at the University of Newcastle, Australia, and a deputy director of the Hunter Medical Research Institute's Precision Medicine Research Program. He is also the founder and director of RUN DIPG, a charity dedicated to improving the outcomes for patients and their families impacted by this horrible disease. Matt lost his own daughter to DIPG in 2018, and I'm sure it feels like yesterday for him and his family.

I've written to the federal health minister, Mark Butler, imploring him to commit medical research funding for DIPG through Australia's $20 billion Medical Research Future Fund. Professor Dunn told me he and his wife were told when his daughter was diagnosed, 'Go home and make memories.' He is committed to research in this disease until that line is no longer the standard line used by doctors.

We in this House should make every effort to ensure there is hope and that miracles can occur. I am committed to supporting these wonderful parents.