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Advocacy and a Voice in the Community
The Unicorn Foundation is committed to giving neuroendocrine (NET) cancer patients, their families and friends, a voice in the community.
For a long time, NET cancer patients have not only suffered the physical and emotional burden of cancer, but also the indignity of being overlooked and abandoned by a system that has little interest in the rare or obscure. The resultant feelings of disenfranchisement and isolation significantly exacerbate the despair and suffering that is associated with having a cancer.
We are a minority group which needs to unite and rally together to make real changes in the medical landscape and lobby for recognition and change.
Funding for Peptide Receptor Radionuclide Therapy (PRRT) for each State in Australia.
PRRT or "Lutate therapy" is a treatment for receptor positive neuroendocrine cancers. In Australia we have significant experience in the provision of this therapy and Internationally recognised experts in this field - Peter MacCallum Cancer Institute (VIC) -Prof R Hicks and The Freemantle Hospital (WA) -Prof H Turner. Unfortunately, these institutions cannot meet the increasing demands for this treatment and the financial burden has restricted access resulting in prolonged waiting times. Patients waiting for PRRT are suffering the physical and emotional burden of knowing that their cancers are being left untreated.
There are other Australian Hospitals who have performed a few cycles of PRRT for neuroendocrine cancer patients - Royal Brisbane Hospital (QLD), The Queen Elizabeth Hospital (SA) and recently St George Hospital (NSW). Tragically, none of the above hospitals can financially sustain PRRT without external Government support.
In NSW we have been able to obtain in excess of 1500 signatures petitioning the NSW Government to fund PRRT. It has been tabled for discussion in the Legislative Assembly.
Dr John Leyden, representing NSW neuroendocrine cancer patients is working closely with NSW Agency of Clinical Innovation Radiology and Nuclear Medicine Network in developing a pathway for PRRT.
We must continue to lobby for this essential treatment for neuroendocrine cancers.
For more information or advice about lobbying for treatments or any other services for neuroendocrine patients in Australia, then please contact Dr John Leyden at firstname.lastname@example.org