Hello everyone,
Here are three key updates to begin with:
NICE Technology Appraisal:
This week, we represented patients at a NICE committee meeting on the potential NHS reimbursement of Vorasidenib for low-grade glioma. In October, NICE issued an interim decision not to fund this drug. We hope the evidence presented will lead to a positive change. Timelines for the final decision should be available next week.
Read more about Vorasidenib here.
National Cancer Plan:
Minister Dalton recently confirmed: “the plan will include further details on how the Government will improve outcomes for cancer patients, including brain cancer patients”. We now expect the plan to be launched on 4th February, 2026 – World Cancer Day.
Northern Ireland Update:
This week, Katherine returned from a productive trip to Northern Ireland (NI), where she met our great friend and Member of the Northern Ireland Assembly (MLA) Cara Hunter. Cara was 23 years-old and had just been elected to Stormont when, in 2020, she was diagnosed with a Prolactinoma, a tumour pituitary gland tumour. Cara very kindly sponsored our first Stormont event in September 2024.
Katherine will be returning to Stormont to meet Cara again in due course, as we continue to build our stakeholder engagement plans in the Assembly which are a key part of our campaigning activities in the devolved nations.
Katherine also attended the Neighbourhood Model of Care VOSE workshop, led by NI Chief Pharmacist Cathy Harrison. This focused on future care models within communities and included stakeholders from the third sector and the NHS, including Macmillan Cancer Support and Alzheimer’s Society. We’ll continue building partnerships through our membership of the Northern Ireland Cancer Coalition.
Westminster Engagement:
Hugh met with Clive Jones MP to discuss his role as a Parliamentary brain tumour champion As someone who has had a breast cancer diagnosis, Clive is keen to impact in the cancer space and is the Chair of the APPG on Breast Cancer. Following our meeting, he joined Hugh at a meeting of the Chairs and secretariat providers of different cancer APPGs, to discuss collaboration on issues such as workforce, research and clinical trials, ahead of the National Cancer Plan and the Rare Cancers Bill when it hopefully receives royal assent and becomes an act in early 2026.
Research Spotlight:
OurBrainBank UK, who we have been collaborating with on tissue storage and wider access to whole genome sequencing (WGS), in collaboration with the computational oncology group at Imperial College London, has launched a study on UK brain tumour patients seeking treatment outside NHS standard of care. The research aims to understand treatment choices, costs and unmet needs.
If you are over 18, a patient eligible for NHS treatment, or caregiver, please share your experience by completing the survey – whether or not you’ve had treatment outside the NHS.
Still relating to tissue storage and WGS, MP Dr Danny Chambers asked the Secretary of State about steps to improve access to Whole Genome Sequencing for primary brain cancer patients, including refrigeration issues, access and speed of processing.
Read Minister Ahmed’s response here.
Next week: Updates from Scotland and analysis of the Budget from a Brain Tumour Research perspective.
Have a peaceful week until next Friday.
Karen, Hugh, Katherine and Jana.
