News and Updates
December 2021 - Unicorn Foundation NZ Founder and Board Member Steps Down
Unicorn Foundation NZ founder, Siobhan Conroy dedicated countless hours to building the organisation from scratch and it is thanks to her endless advocacy for neuroendocrine cancer patients that we have the diagnosis and treatments available today.
As CEO for six years, she made huge advances for neuroendocrine cancer patients, and as a board member for the past three years she has overseen even more gains - most notably implementation of PRRT as a national service.
After working for and on behalf of our community for so many years, Siobhan has decided that 2022 will see her focus more on her family and her thriving new business.
We thank you Siobhan for all your incredibly tireless work, tenacity and commitment to getting Unicorn Foundation NZ off the ground and Neuroendocrine Cancer NZ to where it is today.
Some of Siobhan's major highlights are listed below:
2013: Unicorn Foundation launched
As a newly diagnosed NET cancer patient, Siobhan went searching for information and was appalled at the lack of support for neuroendocrine cancer patients in New Zealand.Undaunted by this, she established the Unicorn Foundation NZ to focus on patient support, improved access to treatment, increased awareness of these cancers, and supporting research.
2015: GaTate PET scanning launched at Mercy Radiology
Specialist diagnostic scans identify if a NET cancer patient is a suitable candidate for the life-extending treatment called Peptide Receptor Radionuclide Therapy (known as PRRT). But New Zealand had no GaTate PET scanner, which forced patients to travel to Melbourne at their own cost to check if PRRT could help them.
In April 2015, a team of dedicated cyclists rode the length of the North Island to raise money for a state-of-the-art diagnostic GaTate PET scanner that now lives at Mercy Radiology in Auckland, and is accessed by both public- and privately-funded patients.
2016: Specialist NET nurse appointed to support patients
As a patient herself, Siobhan lived and breathed the fact that NET cancers are so diverse that each patient's symptoms vary enormously. She knew that patients living day-to-day with symptoms needed practical advice on living with NETs. A new era began when Siobhan recruited Avril Hull to Unicorn Foundation as our first specialist NET nurse. She was later followed by Lesley Harrison in Christchurch, to provide a South Island focus.
Other patient support Siobhan implemented included cuppa catch ups for patients at cafes around the country, an annual NET patient education day with incredible expert speakers from New Zealand and Australia, a patient-only facebook page and our trademark patient booklet.
2017: PHARMAC support for PRRT
In 2017, PHARMAC considered Unicorn Foundation NZ's PRRT funding case that included expert medical evidence, detailed patient stories and was supported by letters from our more than 2,000 strong NET cancer community. PHARMAC, Ministry of Health and Auckland District Health Board (ADHB) agreed that publicly funded PRRT should be made available to New Zealanders once the systems and relevant expertise are are in place.
2018: Expanding support, expanding advocacy
In 2018 Siobhan brought Christchurch nurse Lesley Harrison onto the Unicorn Foundation team. That saw cuppa catch ups held more frequently in Christchurch and Dunedin and in new locations like Greymouth and Nelson. To keep these events free for all patients to attend, Siobhan remained a tireless fundraiser, with events like Craft Beer and Bites, fun runs and more epic cycling adventures. She also worked tirelessly with the media to keep the spotlight on the plight of neuroendocrine cancer patients, who still needed to pay privately and travel to Australia for PRRT.
And now, we have PRRT as a permanent service for New Zealanders
Concern at the continued delays in setting up PRRT led Unicorn Foundation to advocate for High Cost Treatment Pool access for NET cancer patients to access PRRT in Australia. In October 2019 the Minister of Health agreed to fund up to 30 patients per year under this scheme.
In 2020 COVID-19 in Melbourne saw the Victorian state borders closed, so New Zealand NET patients could no longer access PRRT in Melbourne. Unicorn Foundation NZ was involved in spearheading a cross-agency roundtable to establish an interim PRRT service in Auckland to meet the needs of urgent patients who were no longer able to receive treatment in Melbourne. The first patients received PRRT at ADHB in September 2020. July 2021 saw the Minister of Health formally launch the new, permanent PRRT service at ADHB, delivering on one of the founding goals of Unicorn Foundation.
October 2021 - Octreotide brand switch
From 1 September 2021 PHARMAC has switched suppliers for octreotide. Prior to 1 September 2021, Novartis supplied Sandostatin LAR, but over the next six months this will shift to Teva's generic octreotide. By 1 March 2022 Teva will supply a minimum of 95% of the market. We have launched a nationwide nurse survey to collect information about the octreotide brand switch and any issues - big or small - that nurses and patients encounter.
The survey will be open for at least six months so we can track the rollout of the generic octreotide. Over the next six months, we will be reporting the results to PHARMAC, Medsafe 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 neuroendocrine cancer community.
The survey is for nurses, but 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.
14 July 2021 - PRRT Officially Launched in NZ
Minister of Health, Hon Andrew Little officially launched the new, permanent, national PRRT service in Auckland on Wednesday 14 July 2021. Unicorn Foundation NZ has spent more than six years advocating for this treatment. Now, any neuroendocrine cancer patient who needs PRRT will be able to access the treatment through the public health system.
Image: Health Minister, Hon. Andrew Little
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