"NeuroEndocrine Cancer Australia have pioneered a national action plan. The goal of the plan is to highlight the need for greater awareness of NETs as a distinct group of cancers and its significant impact on patients, their families and the healthcare system. The plan is built on over a decade of research, working with patients and other stakeholders."

Address to the House of Representatives, Adjournment Debate

Monday 29 November 2021

I'd like to take this opportunity to raise the issue of neuroendocrine tumours, also known in Australia as NETs. The issue was brought to my attention in a meeting with Canberrans Lynda and Simon Dunstone, who are working to raise awareness of NETs across the ACT and the country. Lynda has a stage IV pancreatic NET that has spread to her liver. She was misdiagnosed and had two years of chemotherapy for the wrong cancer before finally getting her NET diagnosis. This was in addition to a lengthier original misdiagnosis. Heavily impacted by Lynda's misdiagnosis, Lynda and Simon have been working with the not-for-profit NeuroEndocrine Cancer Australia advocating for greater awareness and policy change regarding NETs. Lynda is also a valued support group facilitator for other patients.

NETs are a distinct type of cancer. They develop from the endocrine system rather than from cells of an organ or tissue like other cancers. They can arise in various parts of the body and can develop into other conditions such as diabetes and other diseases. Sometimes it's referred to as the forgotten cancer, as there is a concerning lack of awareness of NETs by healthcare professionals, let alone the general community. This means that patients are frequently misdiagnosed or are only diagnosed after significant delay. Indeed, the median time to diagnosis is 9.2 years, and in 60 per cent of cases, the patient has stage IV cancer at the time of their diagnosis. This not only has a severe impact on a patient's survival and quality of life but means they face high out-of-pocket costs, reduced capacity to work, if not early retirement, and financial stress. The effect on the emotional health of the patient and of their family and friends is also substantial. Furthermore, late diagnosis results in high economic cost to the health system due to the unnecessary and inefficient use of healthcare resources.

Sadly, the number of sufferers of this debilitating condition is high. There are currently more than 22,000 Australians living with NETs, and it's estimated that over 5,000 people will be diagnosed this year alone. It is estimated that, this year, NETs will be the seventh-most-common cancer diagnosis, yet it's still relatively unrecognised in the general community. Compared to other countries, Australia plays a leading role in significant areas of research and many therapeutic treatments for NETs. However, patients remain far from receiving optimal treatment. We must do more.

NeuroEndocrine Cancer Australia have pioneered a national action plan. The goal of the plan is to highlight the need for greater awareness of NETs as a distinct group of cancers and its significant impact on patients, their families and the healthcare system. The plan is built on over a decade of research, working with patients and other stakeholders. Some of the recommendations include increased patient support through specialist NET telehealth nurses. Currently there is only one NET nurse for telehealth purposes for over 22,000 patients across Australia. There is also a need for targeted awareness campaigns, healthcare professional education, nationwide optimal care pathways and referral frameworks, and health sector delivery support through centres of excellence and a NET data registry, as well as, of course, increased access to research funding. Central to the plan's recommendations is to leverage existing capabilities, expertise and infrastructure.

Lynda and Simon reached out to the federal government seeking consideration of the national action plan's modest recommendations. However, they were not reassured by the government's response. NETs as a distinct type of cancer and its place within existing structures was overlooked, and the funding figures noted in response were inconsistent and added confusion. The modest call for an additional five telehealth NET nurses was rebuffed, despite the capacity of the still-small team to provide invaluable advice and referrals to those 22,000 patients. But I'm pleased to say that the shadow minister for health and Dr Mike Freelander and other medical professionals here are actively engaged in trying to raise awareness of these very serious issues.