Allegra Spender (Wentworth, Independent) Share this | Link to this | Hansard source

I've had two meetings recently with Australians whose lives have been touched by childhood cancer. One meeting was with Professor Matt Dun, who lost his infant daughter, Josie, to diffuse intrinsic pontine glioma. DIPG is the deadliest form of childhood cancer, one for which there is no cure and one where loss follows just months from the diagnosis. Professor Dun himself is a leading medical researcher and has developed a unique treatment that prolongs the lives of children with DIPG. But the obstacle to providing this to more children and their families is simply funding. The diagnosis is devastating to a family, and the families that I've met with absolutely broke my heart. I know that it's not just DIPG but a host of other cancers that can strike in childhood, so I urge everybody to throw everything we can at improving our understanding and at finding effective treatments.

The second meeting I had was with a constituent, Ruby. Ruby is a lovely and dignified 16-year-old from Wentworth who has been through incredible hardship. She suffered from leukaemia and has lost her sight. She and other survivors of childhood chronic illnesses came to parliament this week to help us understand the challenges that children and their families face when they have chronic illnesses—the disruption to schooling, the mental health impacts, the social isolation, the challenges of transitioning from paediatric to adult care—and what is needed to ensure that illnesses in childhood don't define the rest of their lives. Despite all the progress we have made in recent years, we have a long way to go to support people like Josie and Ruby. So I urge the government to listen to Child UnLimited and DIPG and support those children and their families through these times.

Integrity was the No. 1 issue at the last election. After years of a government that barely paid attention or even lip-service to principles of ethics, integrity and accountability, Australia voted for change. They voted for a new government which promised to do better and to do the right thing. Labor now needs to follow through on those promises. They've made some welcome, long-overdue changes, including to the National Anti-Corruption Commission, and progress towards better parliamentary workplace standards, and I commend them for that. But other necessary changes are languishing, particularly the culture of secrecy that lies at the heart of government. The Qatar affair clearly demonstrates a yawning gap between the transparency we were promised, what the Australian population expects and what the government is delivering. More than a month after this decision we still don't really know why the decision was made. Genuine transparency is absolutely critical, and without it we can't have accountability and we will not have integrity. It's time for the government to do better.