For a couple of years now, the UK has struggled with NET treatments being unavailable, due to lack of NHS approval. The NPF is however delighted with the three positive outcomes it has received this month. Patients, healthcare professionals and industry groups have been working so hard to bring us back to a service where we could offer all the treatments a NET patient has the right to receive:

1. Scottish Medicines Consortium (SMC) has approved lutetium 177Lu oxodotreotide for patients in NHS Scotland .
SMC: “We would like to thank the NET Patient Foundation for the time and effort taken to produce your submission. Capturing the views and experiences of patients and carers is an important part of the SMC process and plays a key role in helping our Committee reach its decisions. We hope that your patient group will welcome this decision”.

2. The National Institute for Health Care Excellence (NICE) has recommended Lutetium (177Lu) oxodotreotide, within its marketing authorisation, as an option for treating unresectable or metastatic, progressive, well-differentiated (grade 1 or grade 2), somatostatin receptor-positive gastroenteropancreatic neuroendocrine tumours (NETs) in adults.

3. All Wales Medicines Strategy Group (AWMSG) has recommend Telotristat ethyl as an option for restricted use in NHS Wales to treat carcinoid syndrome diarrhoea in combination with somatostatin analogue (SSA) therapy in adults inadequately controlled by SSA therapy.

AWMSG: “The information the NET Patient Foundation submitted, on behalf of the NET community, helped the All Wales Medicines Strategy Group to understand how this condition affects patients and carers.”