Hello everyone,
The National Institute for Health and Care Excellence (NICE) recently published its initial guidance on the drug vorasidenib for treatment of low-grade glioma, which stated its position that “vorasidenib is not required to be funded and should not be used routinely in the NHS in England for the condition and population in the recommendations. This is because the available evidence does not suggest that vorasidenib is value for money in this population.”
We noted at the time that this was an interim decision while more evidence was being gathered and we asked you to provide us with your experiences of vorasidenib so we could make your voice heard.
Today we wanted to reassure all of you who got in touch with powerful and compelling stories that we have made the written evidence submission to NICE and this will be considered by the committee ahead of the next appraisal meeting to be held on 20th November.
We will be at the meeting in our role of Patient Experts and the evidence provided by you will inform us in the contributions we make to the discussion.
Thank you so very much for sharing with us.
Brain Tumour Research is proud to announce an investment of £2.6 million in a new Centre of Excellence at the University of Nottingham where scientists will focus on improving the understanding and treatment of glioblastoma.
In a world-first study, researchers will use artificial intelligence (AI) to combine genomic data and advanced MRI imaging to predict the earliest signs of brain cancer recurrence. This approach will open options for personalised treatments to give patients a better prognosis and quality of life.
Professor Ruman Rahman (pictured above), Principal Investigator at our new Centre in Nottingham, said: “We envision a future where, ultimately, brain imaging alone will identify drugs tailored to each individual patient to block glioblastoma recurrence. This change won’t happen overnight – we need sustained investment in research into brain tumours to do the vital discovery and clinical work to make our vision of a cure for brain tumours a reality.”
CEO of Brain Tumour Research, Dan Knowles, said: “We are on the cusp of change – and with your help this new Brain Tumour Research Centre of Excellence at the University of Nottingham will play a pivotal role in delivering cutting-edge research to bring about the cure that is so desperately needed.”
You can make a donation to help fund our new Centre and change the story for glioblastoma patients.
Join us in the fight to find a cure.
And, if you’d like to find out more about the research we fund, please read these blog pieces from our colleagues in the research team, Dr Joanna Cull, Research Funding Officer and Nicola Gale our Research Communications Manager:
Blog: How whole genome sequencing can improve brain tumour diagnosis and treatment
Blog: How can we use light to kill childhood brain tumour cells?
Where NICE looks at NHS reimbursement for new medicines, it is the Medicines and Healthcare Products Regulatory Agency (MHRA) who appraise and, where agreed, licence new drugs for access to the UK market. An MHRA license is a regulatory authorisation that is necessary for manufacturers to produce, distribute, and market medicinal products, ensuring that they meet safety, quality, and efficacy standards.
They have issued two press releases this week that we thought you’d be interested to read as they show a progressive ambition that could be helpful to our community going forward.
Firstly, Professor Jacob George has been appointed as the first MHRA Chief Medical and Scientific Officer. This is a pivotal role that will drive scientific excellence and shape the future of regulation through the MHRA science strategy.
Secondly, the MHRA has claimed this week that major change for rare disease treatments are on the way. The MHRA is supporting the ambitions of the Government’s life sciences strategy by “overhauling the rulebook” for rare disease therapies to make it quicker and easier to get these therapies tested, manufactured and approved in the UK.
Returning to the subject of AI, this week we were very pleased to have been asked by a global pharmaceutical company to join a small group of charities in a ‘Knowledge Lab workshop’ which was titled: ‘How patient organisations can upskill in artificial intelligence to enhance advocacy, engagement and decision-making'.
This was a fascinating event where we spoke of the opportunities and fears for the new technology and we came away buzzing with ideas of ways to interact with and use AI to make us as effective and lean a campaigning organisation as possible.
However, one thing that won’t ever be written by AI is our weekly campaigning update because that comes from the heart of Brain Tumour Research and has done so for over five years now.
It is written for the brain tumour community by people passionate about improving the world of those diagnosed with a brain tumour and we hope rings out with integrity because it is the human voice, the collective amplified human voice that will continue to drive for change and ultimately make the difference.
That’s it for this week – we will be back next week with something of a devolved nations special (Westminster is currently in recess).
Wishing you all a peaceful time until then,
Karen, Hugh, Katherine and Jana.
