The Unicorn Foundation has been working overtime in 'advocating' Governments and their agencies for equitable access to treatments and drugs for our Australian neuroendocrine cancer patients.
Patient/health consumer activism is an integral part of the Unicorn Foundation's mission and is vital to ensuring our patients are not neglected by a medical and charity system that focusses on common cancers to the perceived exclusion of all others.
In the last 12 months, Dr John Leyden with the support of many of our patients have lobbied for Pharmacetical Benefits Advisory Board (PBAC) recognition of the need for sunitinib (Sutent) and everolimus (Affitor) for the management of metastatic neuroendocrine cancers.
Over the last 6-8 months, in New South Wales, we have been actively 'fighting' for funding for PRRT (Lutate) for patients with metastatic neuroendocrine cancer. The response and engagement of our NSW patients in this endeavour has resulted in media exposure (print, radio and television) and more than 400 letters to State Politicians. This solidarity is an example of how the Unicorn Foundation, with engaged and commited involvement of our patients will facilitate positive change that will improve outcomes for all our patients.
Recently, our Executive Officer Simone Leyden, and Sue Stewart were in Canberra for a Rare Cancer awareness initiative. At this meeting, they had the pleasure of meeting with Senator Abetz and other Federal Politicians and were able to highlight some of the poignant issues that impact on the lives of patients with NETs. Awareness raising activites such as these are vital to educate our 'policy' makers about NETs and the need for greater support.
For uncommon cancers, such as NETs it is essential that all patients be active participants in advocacy roles because only the loudest voice gets heard. If you would like to get involved, please contact Dr John Leyden at john.leyden@unicornfoundation.org.au.
