ADJOURNMENT;International Childhood Cancer Awareness Month – 04 Sep 2017

September is International Childhood Cancer Awareness Month and it is a time when cancer organisations around the world put the spotlight on children’s cancer and the need to improve diagnosis, treatment and outcomes. We need to do more to drastically improve childhood cancer survival rates in Australia and across the world. In Australia, over 700 children aged nought to 14 are diagnosed with cancer every year, and about 100 will die from the disease. Of those children, 35 or so each year are children who suffered from brain cancer.

The awareness month is the idea of Childhood Cancer International, CCI, which was founded in 1994 as an umbrella organisation of childhood cancer grassroots and national parent organisations. CCI is a global, parent driven non-profit organisation that represents 181 parent organisations, childhood cancer survivor associations, childhood cancer support groups and cancer societies in 90 countries across five continents. In September every year, CCI members and childhood cancer champions, advocates and supporters encourage iconic buildings, historic landmarks, monuments, bridges and natural environment to go gold by lighting up in gold or by hanging huge gold ribbons. So it was good to see, late last week, the photo of the Sydney Harbour Bridge lit up in gold in support of this cause. Other buildings in Melbourne, Fremantle and other locations around Australia are also going gold during September for this great cause.

Individuals can show their support for kids with cancer by turning their homes, workplaces, schools and communities gold. It must be so incredibly difficult to be a parent of a child diagnosed with cancer. Many parents have given evidence and written submissions to the Senate Select Committee into Funding for Research into Cancers with Low Survival Rates, and their testimony has been utterly heartbreaking. I acknowledge in the chamber tonight two of my colleagues who are also on that committee, Senator Smith and Senator Griff, who have both been really great colleagues to work alongside on this committee. I note that it has impacted all members of the committee and witnesses alike to hear these heartbreaking stories that the parents have told us.

But we have also heard of parents using their experiences to help others. In Australia, The Royal Children’s Hospital Melbourne’s Children’s Cancer Centre Parent Advisory Group, commonly called PAG, and Childhood Cancer Support are members of the CCI. PAG is a made up of a number of parents or carers of babies, children or adolescents who are being or have been treated for cancer or a haematological disease at The Royal Children’s Hospital Melbourne’s Children’s Cancer Centre. Childhood Cancer Support is a not-for-profit organisation that, for the past 40 years, has been dedicated to providing families in Queensland affected by childhood cancer with a place to live that looks and feels like home.

There are many other organisations that raise funds for childhood cancer research, for example, The Kids Cancer Project, or that provide support for children with cancer, such as CanTeen, which I spoke about in this place only recently. While in the general population cancers like leukaemia have had large improvements in survival rates over the last few decades, there was little or no survival change for several types of childhood cancers over recent years. These include brain, kidney and liver cancers. The incidence of liver cancer in children is increasing by 2.5 per cent per year compared to a stable trend of a 0.2 per cent per year increase in the rate for all childhood cancers combined. The reasons for the apparent increase in the incidence of liver cancer are unknown. An international study involving the Australian Paediatric Cancer Registry is being planned to examine issues around childhood liver cancer.

Approximately 35 children, as I said before, which is equivalent to a fairly large classroom of children, will die from brain cancer alone this year in Australia. This weekend’s Sunday Tasmanian and other News Corp papers throughout Australia launched a campaign to improve childhood brain cancer survival rates. I thank The Mercury for their article and for quoting me, as chair of the Select Committee into Funding for Research into Cancers with Low Survival Rates, in that article. That’s because there needs to be drastic action to improve survival rates for brain cancer and other childhood cancers. Not only do survival rates need to improve but the impact of the cancer treatment also needs to improve. Unfortunately, children who survive cancer can suffer serious long-term consequences resulting from their treatment. Depending on factors such as the type of cancer and the treatment the child receives, there can be many different impacts on the child’s overall health. Some examples include learning and behavioural problems, vision and hearing deficiencies, stunted growth, heart disease, reduced lung capacity, dental issues, impaired sexual development and a higher risk of secondary cancers—so there’s still a lot of work to be done.

As chair of the Senate Select Committee into Funding for Research into Cancers with Low Survival Rates, I’ve heard some extremely sad stories from right around the country. The committee has heard from many parents who have lost their children to brain cancer or some other low-survival cancer. Cancer is a terrible disease, yet it seems more terrible when it affects children. As rapid advances have been made to improve survival rates for some of the better publicised cancers, I believe now is the time to concentrate more efforts on low-survival cancers, because too often the committee has heard the outcome isn’t a good one. In one bright spot, though, time and time again we’ve been told of wonderful paediatric oncologists, nurses, doctors and other medical professionals who have gone over and beyond to make the children’s lives better.

Recently I had the opportunity to visit the Royal Hobart Hospital’s paediatric oncology outpatients clinic. I was there at the invitation of the Kids’ Cancer Project. In this life, some people are simply an inspiration and do amazing things just to help others. Col Reynolds, founder of the Kids’ Cancer Project, is one of those people. Twenty-five years ago he decided to start a charity to support research into childhood cancer. Since 1993 the Kids’ Cancer Project has raised over $36 million to assist childhood cancer research, which is a remarkable feat. Now the Kids’ Cancer Project has committed $140,000 over two years to support access to clinical trials for Tasmanian child, adolescent and young adult cancer patients. The project will assist with the establishment of a statewide children’s and AYA cancer clinical trials unit at the Royal Hobart Hospital. This will make an extraordinary difference to the lives of many Tasmanian children and AYA patients with cancer and their families. Many families will no longer need to spend weeks or months separated while treatment is sought on the mainland, which is obviously a stressful and expensive process that can be very difficult for families. The children on the trials will be able to be treated in their home state, closer to friends and supportive family members. I’m extremely excited by this development, and I hope this initiative will result in a dramatic improvement in cancer treatment for Tasmanian children.

While I was at the Royal Hobart Hospital, I felt extremely privileged to meet some of the young patients. One of these young patients was little two-year-old called George. George has brain cancer, but he’s still a happy, smiling little boy, and I say to his mum now: I think you and George are both extremely brave. It’s children like George who inspire me to continue raising awareness of this terrible disease. Another organisation that provides a lot of support for children with brain cancer and their families is the Cure Brain Cancer Foundation. I think most people here know that I’ve been involved with the Cure Brain Cancer Foundation for many years. I have to put in a little plug for the Hobart Walk4BrainCancer 2017.

This is the fourth Walk4BrainCancer event that I’ve organised in Hobart, and it will be held at Dru Point Bicentennial Park in Margate at noon on 5 November. It’s a relaxing two-kilometre walk along the banks of North-West Bay, which is south of Hobart, and the aim is to raise funds and awareness for brain cancer research. People can register and start raising funds by heading to and clicking on the map of Tasmania. I’d like to encourage people to register, bring along their families and raise much-needed funds for this fantastic cause.

I do hope fervently that we can improve cancer survival rates, particularly for children and young adults. Each of us has a part to play. We can do so by raising awareness through the Childhood Cancer Awareness Month campaign, helping raise money for organisations that fund research across childhood cancers, like the Kids’ Cancer Project; providing support to childhood cancer patients through organisations like CanTeen; or raising funds for organisations like the Cure Brain Cancer Foundation, which provides support and funds research into particular types of cancers that impact children particularly hard. There is so much more to do to improve childhood cancer diagnosis treatments and survival rates. Please use September to talk about this issue with your families, friends and colleagues, help out where you can and remember to light up gold for kids with cancer.

The PRESIDENT: Thank you, Senator Bilyk. I think we’ll overlook your plug there—that’s quite okay!