Nick Xenophon (SA, Independent) Share this | Hansard source

I rise tonight to pay tribute to a remarkable and brave South Australian I recently had the enormous privilege of meeting, who has been crusading for awareness of childhood cancer and the need to find a cure, all while fighting the most difficult battle of all: the battle for her own life. Erin Griffin is 13 years old. While many teenagers her age are consumed with Justin Bieber or One Direction, Erin has been juggling school, cancer treatment and the very important business of staying alive.

Born in Kilmarnock, Scotland, Erin emigrated to Australia with her family and now live in the southern suburbs of Adelaide. Erin attends Willunga High School when she can, but when she was diagnosed with an aggressive, inoperable brain tumour last year she kept this devastating news to herself. Initially only a handful of closely trusted people, including her own family, knew of her ordeal. Erin's incredibly hopeful and loving mum, Amanda, says Erin was determined to be treated just like everyone else. Not fond of the spotlight, she was worried people would look at her differently. Whenever her radiation treatment caused her to miss out on school, she would be back in class the same afternoon and would make an excuse about where she'd been. Only her best friend in class knew the truth.

But let us pause and go back to where the struggle began. In February last year, when she was just 12 years old and with her whole life ahead of her, Erin was struck down with terrible headaches and vomiting. Erin had contracted tumours in the stem of her brain, which, because of their location, are the hardest to treat. Her mum, Amanda, scoured the internet to find out more about this puzzling and devastating disease, called DIPG, or diffuse intrinsic pontine glioma. Her family were told she had only months to live. While that would be enough to make even the strongest person crumble, Erin decided to take a different path. She decided to fight. This shy teenager, who had not even told her classmates what she was up against, decided to seize the spotlight in an effort to bring awareness to her disease and to help others. Erin used her wish with the Make-a-Wish Foundation to find a cure for childhood cancer. She selflessly used her own wish for the benefit of others in raising international childhood cancer awareness, which took her all the way to a rally in Washington DC. There she was, halfway across the world away from her home, no longer willing to hide anymore. Erin addressed a crowd of thousands and told them:

All childhood cancers need a cure and it isn't fair that children are dying because there's no treatment for them. Children have their whole lives ahead of them. Kids are our future, but lots of kids with cancer don't get a chance to grow up because there is not enough awareness and not enough funding or treatments.

Obviously, I cannot do justice to what she said because I cannot mimic the beautiful Scottish accent that Erin has!

With no other treatment options available anywhere in the world, Erin took part in a world-first clinical trial at the Westmead Children's Hospital in Sydney. She now spends one week a month in Sydney for the gene therapy trial, funded by The Kids' Cancer Project.

Professor Peter Smith, the Dean of Medicine at the University of NSW and Chairman of the Research Advisory Committee of The Kids' Cancer Project has made this powerful point:

Unlike adult cancers, for which risks can be modified through lifestyle changes like quitting smoking or losing weight, there are no such risk factors for childhood cancers. That means a child's prognosis can only be improved through research advances.

And DIPG is a particularly cruel form of cancer, because the biggest risk factor for DIPG is simply being a child.

The Kids' Cancer Project is an Australian charity supporting the best and brightest research into childhood cancer. And here are some absolutely compelling facts directly from The Kids' Cancer Project which need to be on the public record for as many people to know about as possible: every year 1,400 Australian children are diagnosed with cancer—500 children aged 0-14 years and 900 adolescents and young adults aged 15-24 years. Cancer kills three children per week in Australia, and cancer is the biggest killer of Australian children from disease today. Children get very different types of cancers from adults, and childhood cancer represents a significant number of life years lost, second only to breast cancer in Australia.

Childhood cancer is considered a pharmaceutical orphan; globally it is not considered economic to produce drugs for childhood cancer. Risk factors associated with childhood cancer are unknown. The Australian federal government spends over $120 million per annum in disease prevention and early detection. Adult cancers are the main focus of this program, and I understand that, but these funds have no impact on improving childhood cancer outcomes.

With only $4.7 million out of $559 million in NHMRC research grants allocated to childhood cancer—less than one per cent—research is highly reliant on community support from organisations like The Kids' Cancer Project, and The Cure Starts Now Foundation—two great organisations. Renowned neurosurgeon and great Australian Dr Charlie Teo, whom I am very privileged to count as a friend, underlines the importance of such research. He said:

Brain cancer kills more children than any other cancer. It mostly hits Australians in the prime of their life peaking in incidence in young adults.

Erin Griffin has personally raised $50,000 for The Cure Starts Now Foundation, manages the Facebook page 'Erin Griffin Raising Childhood Cancer Awareness', and started a petition seeking to make childhood cancer awareness a national priority.

Erin has been on the clinical trial for 12 months now and has at least another 12 to go, but the outlook so far is promising, and that is just terrific. Erin's latest MRI results indicate she is stable and symptom-free.

I think it's best that I leave the last words to her:

There are children dying every day from cancer. This is not right and this needs to change. There needs to be more awareness and I'm going to help make this happen.

Well, Erin, you certainly have.

I would like to take this opportunity to honour the amazing Erin Griffin and her wonderful mum, Amanda, for their inspirational efforts to draw attention to this most important issue.

Senate adjourned at 19 : 26