Today NECA CEO Meredith Cummins and Board Member Prof Rod Hicks presented with Peter MacCallum Cancer Centre and NET Patient Sue Manks at the Senate Inquiry for ‘Equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancer’. This was a great opportunity to collaboratively present the issues facing NET Patients.
The issues raised were:
• NETs have been largely ignored and overlooked by government.
• Lack of awareness of NETs in the general and healthcare professional communities.
• Because diagnosis is delayed, for an average of 7 years, symptoms are protracted, and the chance of cure is often lost.
• 10% of NETs are hereditary. Importantly, certain people can be identified as being at risk through being carriers of mutant genes, but no screening programs are available to them.
• Costs for unnecessary tests, impacting patients and the public healthcare system. It costs patients approx. $1,700 over 3 months, for out-of-pocket expenses
• Inequity of access to medications and diagnostic interventions resulting in further financial toxicity.
• Lack of referral pathways due to lack of awareness of the NETs Optimal Care Pathway.
• Lack of any government funding. For over 9 years NET patients are sadly funded their own support.
• As previously mentioned, prevalence is high, and they are not living a good life – poor quality of life.
• Review MBS item numbers & PBS accessibility.
• Lack of funding for research.
• Lack of funding and availability of clinical trials.
• Lack of funding to maximise data and the PLANET registry.
• Travel assistance schemes are inadequate for regional and rural patients.
Thank you to the many NET patients that submitted their stories as part of the Inquiry along side government, industry colleagues and our fellow NGOs for the greater good of NET Patient care across Australia. A huge thank you to Senator Wendy Askew for calling this crucial Inquiry.
Pictured above : A/Prof Ben Loveday, Sue Manks, Kate Wakelin, A Prof Grace Kong & Meredith Cummins.
