Federation Chamber - PRIVATE MEMBERS' BUSINESS - Diffuse Intrinsic Pontine Glioma

11 September 2023

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.

The DEPUTY SPEAKER (Mr Wilkie): I thank the member for Macarthur for his contribution. The time allotted for this debate has expired. The debate is adjourned, and the resumption of the debate will be made an order of the day for the next sitting.