STATEMENTS BY SENATORS;Brain Tumours and Brain Cancer – 19 Nov 2014

Today I want to speak on a matter that I have spoken on a number of times in this place and I will continue talking on to make sure that we raise awareness of it, and that is the issue of brain tumours and brain cancer.

Brain tumours are a disease which affects thousands of Australian families every year, yet receive very little attention. In 2014, approximately 1,785 Australians are expected to be diagnosed with the malignant form of the disease, brain cancer, with 115 new cases a year among children. In addition, approximately 2,000 benign brain tumours are also diagnosed each year in Australia, and these can lead to permanent disability or death. The disease takes the most terrible toll in young people, as brain cancer is the leading cause of cancer death in people under the age of 40. Tragically, brain cancer, is the leading cause of death for Australian children.

Not many people are aware of these sobering facts, but they should be of great concern to all senators in this place and members in the other place. Unfortunately, the prognosis is not terribly good for those that are diagnosed with the disease. Between 2006 and 2010, people with brain cancer had just a 22 percent chance of surviving for at least five years—just 22 percent. Not too many years ago leukaemia had a similar survival rate. However, with research into the disease finding better treatments and better ways to diagnose, survival rates have improved considerably.

With an increase in funding for research into brain cancer, we could save the lives of hundreds of Australians each year. That is why I applaud the work of International Brain Tumour Alliance, Brain Tumour Alliance Australia, Cure Brain Cancer Foundation, the Cancer Council Australia and all the other organisations and medical professionals who have been working hard to support patients, their families and carers and to rid the world of brain cancer.

The 26th of October to 1 November 2014 marked International Brain Tumour Awareness Week. This was the Eighth International Brain Tumour Awareness Week. It was organised by the International Brain Tumour Alliance, the peak international body of brain tumour awareness and fundraising groups. The International Brain Tumour Alliance was co-founded by an Australian, Denis Strangman, and I am pleased that Australia is once again leading the way in this field.

During the awareness week I was pleased to move a motion in this place, with the support of Senator Ryan, Senator Di Natale and Senator Xenophon, marking the week and bringing to attention the impact that this disease has on Australians each year. I would like to thank all senators in this place for their support of that motion. As co-chair of the Parliamentary Brain Tumour Awareness Group, I am pleased with the number of senators and members who have joined the group. It demonstrates a keen interest in this issue by federal parliamentarians from across the political spectrum. I encourage them and people in the broader community to organise an activity next year which will contribute to increased awareness about brain tumours. I would like to thank the International Brain Tumour Alliance for organising the awareness week for the past eight years, and for their continued efforts to promote awareness of brain tumours around the world.

I am also pleased to inform the Senate, and those listening to the live broadcast, that Tasmania’s first Walk4BrainCancer walk was held at Dru Point Bicentennial Park, Margate on Sunday, 2 November. Walk4BrainCancer is a national event which helps raise funds for Cure Brain Cancer Foundation to fund brain cancer research, and I am pleased and proud to have organised the inaugural Tasmanian walk. Over 100 determined people braved the rain and hail of a bitterly cold Tasmanian spring day to show their support and raise funds and awareness for brain cancer. In fact, it was hailing as we were walking. Each one of those people walked for their own reasons: for a friend or a loved one; for someone that is living with brain cancer, or tragically, for someone who has succumbed to the disease.

Some of the stories that I heard that day were extremely powerful, and I will relate a couple of them. I was particularly moved by the story recounted to me by one mother. She carried a small teddy bear with her on the walk. The teddy bear had belonged to her son, Cohen. Tragically, Cohen is no longer with us, having passed away in August aged just seven years old, so his teddy bear did the walk in his place. We made sure that Cohen’s teddy had a registration bib like all the human walkers. It was a very touching and sobering part of this wonderful event. I know that Cohen’s family and friends miss him very, very deeply.

Another young lady that I met that day was a 21-year-old medical student named Eliza, who was diagnosed with a grade 2 astrocytoma about 18 months ago. She talked to me on the second half of the walk and she told me that the walk gave her a strong sense of community and of hope in connection with her illness. She felt empowered by the event and inspired to drive change. I am sure that she will do great things and will save the lives of many patients in the future, because she hopes to become an oncologist.

Another of the walkers, Julie Hendy-Cartwright, was particularly passionate about the walk and was involved with me from the very beginning. Julie’s husband, Andrew John Cartwright, passed away in July 2013 from glioblastoma multiforme, the most deadly kind of brain cancer. He was loved so, so dearly. While surgery was able to remove 99 per cent of his brain cancer, the remaining one percent could not be removed and continued to develop despite chemotherapy and the best efforts of his doctors. Unfortunately, Andrew and Julie’s story is one experienced by many couples across the country. I would like to thank her for her support, assistance and passion to help make the event come to fruition.

I would also like to thank all the other people who made this event happen. The Rotary Club of D’Entrecasteaux Channel, of which I am a member, needs to be thanked for holding a sausage sizzle on that wet, haily day to help raise some extra funds for the Cure Brain Cancer Foundation. I would also like to thank Louise Patterson for all the assistance she provided for the event.

I am very grateful to Barrie Littlefield, from the Cure Brain Cancer Foundation, for travelling from Sydney to Tasmania to join the inaugural event. Barrie is Head of Engagement for the Cure Brain Cancer Foundation, and he is another person whose life has been touched by brain tumours. His young daughter Eloise was diagnosed with brain tumours after complaining of blurred vision. She was a playful, kind, caring child with a bright future ahead. She faced the disease bravely, but, despite the best of care from doctors and other medical professionals, she passed away. She was only 10 years old. This sad loss inspired Barrie to join the Cure Brain Cancer Foundation. He now does great work promoting events like the Tasmanian Walk4BrainCancer. I am glad that someone who has such a passion for the cause can be inspired by his own personal tragedy to do such excellent work raising awareness of this issue.

Finally, I would like to thank the many people who participated in the walk and to let them know that this disease will be beaten. We will find cures for brain cancers and improve survival rates—I am sure of that. By raising awareness and funds we can end this disease. I am pleased to say that in total, including online donations and cash registrations, the event, which was organised in just seven weeks, raised $13,346.20, which will all go to the Cure Brain Cancer Foundation. This is an impressive amount for an event held in Tasmania for the very first time.

As I have told this place previously, the Cure Brain Cancer Foundation was founded by Dr Charlie Teo in 2001 and is the largest dedicated fundraiser for brain cancer research in Australia. Its mission is to accelerate new treatments to brain cancer patients and increase five-year survival to 50 per cent within 10 years. The good work that the Cure Brain Cancer Foundation does relies on fundraising, and that is why I am glad that so many Tasmanians came out to support the inaugural Tasmanian walk. Their incredible support for the walk has inspired me to continue this event on an annual basis. While donations for the Tasmanian walk have closed, people wishing to support the work of the Cure Brain Cancer Foundation can do so by making a donation at I encourage everyone in the chamber, and those listening, to do so so that we can beat this terrible disease.

I would like to return briefly to the stories of seven-year-old Cohen and 10-year-old Eloise. Cohen’s and Eloise’s stories are just two among hundreds that highlight for me the tragic consequences of paediatric brain cancer. As I said earlier, brain cancer kills more children in Australia than any other disease. I do not think too many people understand that. I was moved by Senator Xenophon’s contribution on the adjournment debate last night, when he told the story of Erin Griffin, a very brave young lady who was diagnosed with brain cancer at the age of 11. Erin took up the cause of raising awareness of childhood brain cancer until her tragic death at the age of 14. I would like to thank Senator Xenophon from the bottom of my heart for sharing her incredible story with us last night.

As I have said in this place before and Senator Xenophon said last night, despite the low survival rate of brain cancer, Australia’s competitive grants based funding model for cancer research disadvantages research for rarer but more deadly forms of cancer. This is a shameful situation and it must change. We owe it to children like Erin and Cohen and the hundreds of other children dying from paediatric brain cancer to prioritise funding for brain cancer research, and I intend to take up this fight on their behalf. I hope Senator Xenophon and all in this chamber will join me in this campaign because, if there is one cause worth fighting for, it is making sure that our children do not die unnecessarily.