Have your say
Our nationwide nurse survey will run from September 2021 - March 2022 to collect information about the octreotide brand switch and any issues that nurses and patients encounter. We want to ensure we capture all the issues - big and small - so please help us to gather the data we need to monitor the impacts of this brand switch.
The survey will rack the rollout of the Teva generic octreotide that will be gradually replacing Novartis' Sandostatin LAR. By 1 March 2022, 95% of all octreotide will be supplied by Teva generics.
Over the next six months, we will be reporting the results to PHARMAC and Te Aho o Te Kahu Cancer Control Agency on a regular basis. Our goal is to work collaboratively with these key government agencies to ensure the best care and best treatments for our Unicorn community.
If you're a patient on octreotide, please help us by talking to your nurse about the survey and asking s/he to complete it every time there's something good or bad to report.
July 2021 - Have your say on the review of PHARMAC
We have some very clear goals to do with improving access to NET treatments and information, and right now we have an opportunity to let the government know what needs to change within PHARMAC so that we can get the best outcomes for neuroendocrine cancer patients.
If you can spare half an hour, please head on over to the PHARMAC website and download their submission form to complete. It's a simple series of questions but it is a chance to provide your personal experience on access to treatments for your cancer.
Alternatively, click the button below to see our submission. If you're happy to add your name to it, please send an email to firstname.lastname@example.org and tell us who you are and if there's anything in particular you want to support. We will add your email to our submission. The more voices we can add, the more the committee will need to pay attention.
Thank you for supporting our efforts to get a better suite of treatments for neuroendocrine cancer.