Stephen Jones (Throsby, Australian Labor Party) Share this | Link to this | Hansard source

I would like to use this opportunity to raise the awareness of parliament of a childhood brain cancer known as Diffuse Intrinsic Pontine Glioma. I was made aware of the terrible disease by Ms Penny Michie, a resident of Mount Warrigal and a volunteer with The Cure Starts Now—a childhood cancer awareness program. She was particularly concerned about the way the federal government is funding research into childhood brain cancers.

The very rare Diffuse Intrinsic Pontine Glioma accounts for around five to 10 out of every 100 brain tumours in children. Penny's interest in funding came after the tragic passing of a young Australian boy named Talin Hawkins from a diffuse pontine glioma. Talin's plight drew a huge amount of interest through social media and really increased awareness of the disease and has inspired activists like Penny to fight for a better deal for kids who are affected by this rare and usually incurable cancer. So Penny came to me with a request. She asked that I raise this matter in parliament to increase awareness and ensure the government is injecting as much funding as we can into the research of childhood brain cancers and diffuse pontine gliomas.

Because they are very difficult to treat, the outcome for pontine gliomas is very poor. After diagnosis, the survival time is on average only nine to 12 months.    To try and improve the outcome, doctors have used higher amounts of radiation and even chemotherapy to kill the tumour cells—but we need to achieve better results. In an exciting breakthrough last year, oncologists from the Children's Cancer Institute of Australia grew Diffuse Intrinsic Pontine Glioma cells in the lab and found a drug that was able to kill them in a test tube. Following this, I wrote to the health minister to ask what we can do to increase funding in the area of childhood brain cancers and make sure this lifesaving research is able to continue. I am happy to report that, through the National Health and Medical Research Council, the Australian government has made significant investments in the research of childhood brain cancers. During the period of 2000 to 2011, the NHMRC has provided over $33 million for research into brain, eye and nervous system cancers of which $19.9 million specifically targets childhood brain cancer. In 2012, the NHMRC also awarded additional grants as to brain cancer to the tune of $7.1 million.

This is a commitment we are determined to see progress as a government and I have been advised by the minister that funding will continue at this level. I have relayed this good news to Penny and hope to keep working with her and other activists to progress the cause and raise awareness and funds in the Illawarra.