Wendy Askew (Tasmania, Liberal Party) Share this | Link to this | Hansard source

Statistics tell us that everyone here will have supported someone close to them as they face a cancer diagnosis, or the diagnosis may have been even closer, and it may have been you. Cancer touches us all.

This situation changes when the diagnosis is of a rare or less common cancer like neuroendocrine tumours, or NETs, lymphoma, neuroblastoma or appendix cancer. Around 52,000 Australians are diagnosed with a rare or less common cancer each year, but the medical professionals with experience in treating these cancers are generally located in capital cities, meaning that the prognosis is directly impacted by where those patient live. Rare and less common cancers are labelled as such because they impact a small number of people. A rare cancer affects fewer than six people per 100,000, while less common cancers affect fewer than 12 in 100,000 people. Any cancer affecting a child or a teenager is considered rare because cancer affects only a small number of children.

The community affairs committee's rare cancer inquiry was established in June 2023 to address the inequity faced by those diagnosed with a rare or less common cancer, particularly those who live in regional or rural areas. I note the presence of two of my colleagues in the room, Senators Pratt and Kovacic, who are members of the committee with me. Since entering the Senate, as a long-term member of the community affairs committee, I have had many people share their personal health stories with me. One of those was racecourse owner Rob Hammond, who lives on Tasmania's east coast. Rob has been raising awareness of neuroendocrine tumours after his own diagnosis and has raised thousands of dollars through his Racing for a Cure fundraiser to help fund specialist neuroendocrine care nurses to support Australian NETs patients. Receiving a rare cancer diagnosis leaves many feeling unsure about what happens next, but patients like Rob and those who shared their personal stories with me need support too. Arguably, they need more support because what they face is less known than the path ahead of someone with, say, breast cancer. I am hopeful that this inquiry will highlight the most effective methods to achieve equity for patients with rare cancers, no matter the type of cancer or where they live.

The terms of reference for the inquiry cover the barriers to screening and diagnosis, such as geographic location, costs, cultural and language barriers; type of cancer and the availability of treating practitioners; barriers to accessing appropriate treatment; adequacy of support services after diagnosis; and the adequacy of Commonwealth funding for research into rare, less common and neuroendocrine cancers. Since this inquiry was established, the committee has been flooded with submissions from those with an interest in rare cancers, from industry stakeholders to government departments and, importantly, from individuals and families sharing their own stories.

The first two hearings for this inquiry were held in Sydney and Melbourne last week. Committee members heard important evidence about the financial and psychological costs faced by those facing a rare cancer diagnosis and treatment, including how charities step up to offer financial and counselling support for patients, the inadequacy of travel programs when patients have to travel for treatment and the difficulties faced by patients who are so far away from their support network. We also heard about the difference new technologies and treatments like genomic sequencing, precision medicine and tele-oncology can make in rare cancer treatments. Clinical trials are vital in developing our understanding of how to deal with rare cancers, but pharmaceutical companies find it difficult to source enough patients to run the trials here. Then there is the value of effective data collection systems in helping to track rare cancer diagnosis at an individual and community level to inform treatment and further research. We know the value of collaboration and sharing information, particularly when knowledge is scarce. In the case of rare and less common cancers, the medical practitioners who are able to provide expertise are often concentrated at centres of excellence

I was pleased to note the announcement over the weekend of a $20 million research investment to find new treatments for DIPG, or diffuse intrinsic pontine glioma, and other childhood brain cancers. I thank the government for this response and acknowledge Professor Matt Dun for his tireless work in this area. As I read in many heartbreaking submissions and heard in person during our hearings last week—particularly from Professor Dun, who lost his daughter Josie to it—DIPG is a rare but aggressive childhood brain cancer from which just one in 10 children currently survive beyond two years. I'm pleased to see the government turning its focus to rare cancers, and I look forward to furthering this conversation as the inquiry continues.