Advocacy & Policy
Neuroendocrine Cancer UK was founded with the vision of providing support, raising awareness, and driving research for those affected by neuroendocrine cancer. What started as a small community initiative has now grown into a leading charity that advocates and campaigns for patients and their families across the UK.
We believe it is vital that our community should be included early on in critical conversations about research priorities, diagnostic/treatment plans, and healthcare policies. That our community’s voices are invaluable in ensuring that local and national decision-making, resource allocation and policies align with the real needs of all those affected by neuroendocrine cancer.
We would like to share with you some of the work we have been undertaking – and will continue – with your support:
SIRT: Developed through a collaborative effort between patients, clinicians, researchers, and key organisations such as UKINETs, the MRT Consortium, and ourselves here at Neuroendocrine Cancer UK, a preliminary policy proposal has been submitted to the NHS: with the aim of securing more consistent and fair access to SIRT across the NHS. We take the next step in this process this month.
Read more here
Lutetium for Phaeochromocytoma/Paraganglioma (PPGL): We have also submitted a Preliminary Policy Proposal requesting access to Lu177-DOTATATE for those with who have metastatic phaeochromocytoma or paraganglioma (adrenal or paraganglia based neuroendocrine tumours): we have received acknowledgement of receipt. For further information on PPGL click here
PERT: Our PERT charities collaborative continues to work with all stakeholders to improve supply and access to Pancreatic Enzyme Replacement Therapy (eg Creon, Nutrizym & Pancrex)
A recent response to our joint letter to the Prime Minister, from Karin Smith, Minister of State (Department of Health and Social Care) indicates that:
Viatris (Creon) has confirmed that it has secured additional stock allocation from the US manufacturing site for 2025, increasing availability of Creon for UK patients: and that both Zentiva (Nutrizym) and Essential Pharma (Pancrex) have secured additional manufacturing capacity.
There is also an updated Position Statement containing advice for both patients and healthcare professionals (including prescribers and dispensers)
Read more here
NICE: We have accepted an invitation to take part in the appraisal to produce the NICE guidance on “Cabozantinib for treating advanced neuroendocrine tumours that have progressed after systemic treatment”. We have already commented on the scoping document and will follow this through to the expected publication date in November this year.
Cabozantinib is a type of cancer growth blocker called a multi tyrosine kinase inhibitor (MultiTKI).
Tyrosine Kinase Inhibitors block chemical messengers (enzymes) called tyrosine kinases. Tyrosine kinases help to send growth signals in cells, so blocking them stops the cell growing and dividing. TKIs that block more than one type of tyrosine kinase are called multi TKIs.
According to study results (CABINET ClinicalTrials.gov number, NCT03375320) “Cabozantinib, as compared with placebo, significantly improved progression-free survival in patients with previously treated, progressive advanced pancreatic and non-pancreatic neuroendocrine tumors”.
National Cancer Plan for England: In February we joined more than 50+ cancer charities, speaking with #OneCancerVoice, to call on the UK Government to fully fund the upcoming National Cancer Plan, to ensure cancer patients get the care they deserve – read more here
It was stated that “the national cancer plan will also seek to improve outcomes for those diagnosed with rarer and less common cancers, and for cancer in children and young people. It will foster opportunities for UK researchers to collaborate on international cancer research. This is particularly important for areas where affected populations are small, such as with rare cancers.”
The open consultation seeking your views on the National Cancer Plan closes at 23:59pm on the 29th April – to find out more, click here or to go direct to the survey, to add your voice here
We have a further meeting with charity colleagues about the proposed plan later this month.
Rare Cancer Bill: Dr Scott Arthur MP (Lab, Edinburgh SW) has introduced a Private Members Bill on Rare Cancers that sets out to raise awareness and tackle some of the issues facing research and clinical trial availability and access within the rare cancer community.
We would like to thank those of you who wrote to your MP to ask for their support of this important Bill – and are happy to confirm that it successfully passed its 2nd reading in March and has now passed to the next stage.
“Cancer charities that focus on rare cancers have expressed support for the bill and encouraged people to write to their MP to express their support for it in Parliament. These include The Brain Tumour charity, Brain Tumour Research, Pancreatic Cancer UK, and Neuroendocrine Cancer UK”
For more information on this Bill click here
SWAG Cancer Alliance annual conference: we were delighted to accept an invitation to attend the Somerset, Wiltshire, Avon & Gloucestershire Cancer Alliance annual conference “to raise awareness, make connections and showcase the incredible work you do”. The focus this year was on early diagnosis and health inequalities. Alongside meeting some of the clinicians and policy leads, it was great to see several members of our community there: both also active members of the Alliance’s Patient & Public Voice Partnership initiative.
We will “keep you in the loop” on these and other advocacy and policy initiatives through our News page and regular Loop updates
. . . and if you have a story you would like to share about your involvement in local, regional or national Patient & Public Involvement (PPI) do let us know email nikie@nc-uk.org