Julian Leeser (Berowra, Liberal Party, Shadow Minister for Indigenous Australians) Share this | Link to this | Hansard source

Glenorie is a small community where people know each other, where the local pizza shop is the cornerstone of the community and where people band together in tough times. Jemma Juckes was a Glenorie original and for nine years the force behind the Glenorie Pizzeria. She was active and full of life, with dreams of travelling with her husband, Lang, and expanding their family. She developed what she thought was sciatica pain, but, when it became too severe to manage, she went back to her doctor for a scan. That scan found something on her spine—

A division having been called in the House of Representatives—

Sitting suspended from 10:24 to 10:36

A second scan confirmed tumours. In April 2023, a full body scan discovered stage 4 non-small-cell lung cancer with a rare genetic mutation that placed her in a small and particularly vulnerable group of patients. Jemma underwent treatment and sold the pizzeria to focus on her fight.

Then she was offered a lifeline. A family friend working at Chris O'Brien Lifehouse heard about a clinical trial for a drug called amivantamab, specifically targeting Jemma's rare cancer. It was potentially a treatment that could work where others hadn't, but the price was $10,000 a session, every two weeks. It was sourced from overseas with no subsidy on the PBS. Jemma went public, sharing her story with Mamamia and appearing on A Current Affair. She raised funds through Rare Cancers Australia that paid for her treatment costs directly, and her community rallied.

I never met Jemma, but, like so many others, I was inspired by her story. I attended a fundraising walk, and I wrote to the minister, specifically asking him to list the drug on the PBS. I first saw at that walk the love that surrounded Jemma—neighbours, friends and strangers coming together for a woman they wanted to fight for.

Jemma reached her fundraising target, and she accessed the trial. Sadly, she passed away on 18 December 2024, aged 34. Two days later, amivantamab was approved for listing on the PBS. The PBS wasn't designed for rare cancers; the approval pathways are slow, expensive and often inaccessible to small patient populations that need them most. I call on the government to accelerate its work on PBS access for rare cancer treatments.

Since Jemma's passing, her family have channelled their grief into action. The funds raised during Jemma's campaign have been donated to Rare Cancers Australia and to the Chris O'Brien Lifehouse. Last week, at the invitation of Jemma's sister, Elise Pride, I attended the launch of the Jem, the Jemma Juckes wellness program, at the Chris O'Brien Lifehouse. It comprises the Jemma Juckes Wellness Corner, a free online space filled with wellness articles and information about complementary therapies to help people live well with cancer; a grants program to help people living with advanced cancer access support that helps them feel grounded, connected and restored; and the My Journey Wellness Journal, with help to track appointments and questions, wellness practices such as breathwork and reflection, and prompts to help find moments of steadiness while living with cancer. The program supports the mental, emotional and day-to-day realities of living with cancer—the whole person, not just the diagnosis.

To Jemma's family—Lang, Riley, Todd, Elise, Lynn and Brett—and the community of Glenorie: thank you for sharing Jemma with us. Thank you for turning grief into something that will help others. Jemma's bright spirit, her courage and her generosity will continue to inspire.

A division having been called in the House of Representatives—

Sitting suspended from 10:39 to 10:50