Julian Leeser (Berowra, Liberal Party, Shadow Attorney-General) Share this | Hansard source

Tonight I want to speak about a remarkable young woman from Thornleigh West Public School and what has motivated her to do an extraordinary thing. In May this year I had the privilege of joining year 6 student Amelia Raison and her school community for Australia's Biggest Morning Tea. Amelia is just seven years old, and she led the charge with a business plan, organising the event and galvanising her teachers, her classmates, the parents and the wider Thornleigh West family. Together, Thornleigh West Public School families baked, donated and contributed with such generosity that the morning tea raised more than $9,000 for cancer research—a fantastic achievement.

What struck me most that day wasn't the generosity of the school community but the leadership of Amelia. Amelia is a great young woman with a big future, and she was inspired to act because of Simone. Simone is a lifelong local. She and her husband, Dan—also a local—are raising their family in the community they grew up in, because they know, in our community, we have a strong, tight-knit electorate. Simone is also Amelia's mum, and Simone, who is in the gallery this evening with her husband, Dan, is living with cholangiocarcinoma, a rare and aggressive cancer. Diagnosed in September last year, Simone is having chemotherapy and immunotherapy under the care of the dedicated team at the Chris O'Brien Lifehouse in Camperdown.

Cholangiocarcinoma is not only rare; it's aggressive. Around 1,300 Australians are diagnosed each year, and outcomes are significantly poorer than for more common cancers. Too often, symptoms appear only when the disease is advanced, and that really underlies why we must accelerate access to innovative treatments and why investment in research is so vital. For families like Simone's, every advance in treatment offers the possibility of more time, more milestones and more moments together. Right now, that means exploring access to treatments like histotripsy, a promising non-invasive treatment using high-frequency ultrasound to destroy cancer cells. Encouragingly, a histotripsy machine is expected to arrive at the Chris O'Brien Lifehouse centre later this year, with more machines to follow across the states in 2026. The establishment of these machines has only been made possible because of a generous philanthropic donation of multiple millions of dollars.

That generosity has given families hope, but two hurdles remain. The first is time. Australians need faster access to therapies like this. The second hurdle is cost. At first, histotripsy will not be covered by Medicare or private health insurance, leaving families to face tens of thousands of dollars of out-of-pocket expenses. These challenges extend beyond new technologies. In July the PBAC meeting, futibatinib, a medication for patients with cholangiocarcinoma carrying the FGFR2 mutation, was recently not recommended for listing. Another targeted inhibitor, pemigatinib, is only available through costly co-funding of around $24,000. Urgent reconsideration of these medicines would help Australians and ensure they are not denied access to life-extending treatments available internationally.

This isn't just an issue for cholangiocarcinoma patients but for all Australians with rare cancers. Approximately 40,000 Australians are diagnosed with a rare cancer each year. Because these cancers are individually uncommon, they attract less attention, and patients are too often left behind. The PBS has been transformative for many cancers, but, when a promising drug is only listed for one indication, patients with rare cancers who may share the same genetic mutations are excluded. A system that ties access to how common a cancer is rather than whether the science supports treatment is unjust. Other countries are moving faster. In the US, histotripsy has already been used in leading cancer centres. The UK is making strides. Australian families cannot afford for us to leave them behind. Our regulatory processes must be both safe and timely.

I want to acknowledge the tireless advocacy of groups like Rare Cancers Australia and the Cholangiocarcinoma Foundation, made of dedicated clinicians pushing for reform. They remind us that our world-class health system has people continuing to fight for innovation in medicine and treatments. For people with common cancers, subsidised treatments and clear pathways exist. For those with rare cancers, the journey is too often fragmented, bureaucratic and prohibitively expensive. The launch in parliament this evening of the Rare Cancers Australia policy report shows there's so much more to do.

The story of Simone, Dan, Amelia and her sister, Evie, is both deeply personal and powerfully universal. But it's also about a health system that too often trails innovation, leaving Australians with rare cancers at the back of the queue. The courage of families like the Raisons to challenge us to do better is inspiring. Amelia has shown what a determined young woman can do. Simone has shown remarkable strength on her journey. Their school has shown what our community can do when it pulls together. Now we owe it to them to bring compassion, urgency and fairness into the way our health system responds.

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