Hello everyone,
This week, Professor Dame Ottoline Leyser, the outgoing CEO of UK Research and Innovation (UKRI), joined a roundtable with 17 AMRC charity Chief Executives, including our own CEO, Dan Knowles (pictured), to discuss her reflections on the research landscape.
Ottoline spoke about the importance of connection and collaboration, and the role the research community has to play at a time of such instability. She praised the charity sector for the exemplary way they engage their communities, their clarity of purpose and how they represent the view of patients.
During her presentation to attendees, the UKRI CEO explored opportunities for collaboration in the Government's health mission, Life Sciences Sector Plan and in data and AI. She also talked about the importance of diversity and interdisciplinarity.
Post the round table we asked Dan for his thoughts and he told us: “I believe there to be a real overlap between the strategic priorities of UKRI, AMRC and ourselves and there appears to be a desire to co-fund, including support for universities. This gives us ground for optimism, but not complacency, and experience has shown us that we, at Brain Tumour Research, must never take our foot off the campaigning pedal.”
As so many of you reading this update will be aware, glioblastoma is one of the deadliest cancers. However, a question remains: how do some patients manage to go beyond their expected glioblastoma prognosis against all the odds?
Brain Tumour Research is happy to introduce you to Cure51, a French TechBio company that has made this mystery its mission. Co-founded with European leading oncology centres, it is conducting the “Rosalind study”, named in honour of Rosalind Franklin, a pioneer in DNA research. Its goal? To understand what makes the difference in these miraculous patients, as they say on their website: “New game, new rules. Instead of focusing solely on patients who unfortunately don't survive, we start with the miraculous patients, who have survived very aggressive cancers, and we want to understand why.”
The key points from Cure 51 are that they have identified 1,500 survivors across 42 countries, with 150 medical centres involved, and are seeking a new analysis of tumours, clinical data, and images to uncover new therapeutic targets.
If you would like to find out more, visit them on Facebook or their website.
Cancer charities have this week written to Liz Kendall MP, Secretary of State for Work and Pensions, urging a U-turn on proposed changes to Personal Independence Payment (PIP) that they say may disproportionately affect cancer patients.
The UK Government’s Green Paper ‘Pathways to Work’ outlines new restrictions that would alter the scoring system for the Daily Living component of PIP – potentially disqualifying many people with cancer from receiving this essential support. PIP currently provides up to £187.45 per week for people aged 16 and over, living with a serious illness or disability.
Leading cancer charities, including Brain Tumour Research, Young Lives vs Cancer, Anthony Nolan and Blood Cancer UK, warn that the proposed changes will worsen financial hardship already widely reported among cancer patients and their families. Research from Young Lives vs Cancer shows that 3 in 5 young people with cancer are forced to use their savings to cover essential costs during treatment, with costs rising 15% since 2017.
Under the new proposals, many young people will be excluded from financial support entirely, with planned restrictions to Universal Credit’s Health Element and a move to raise PIP’s minimum age from 16 to 18.
These changes risk stripping away vital financial support from cancer patients. For brain tumour patients in particular, the physical and cognitive impacts of the disease already create immense challenges. Denying them access to PIP will only deepen the hardship and uncertainty they face.
During this week’s spending review, the Chancellor promised a real-term 3% a year addition to spending on the health services over the parliament, saying this will amount to an extra £29bn in spending overall. There was further good news with a “transformative £86 billion boost to science and tech to turbocharge economy.” This ‘boost’ has a distinctly regional feel and, “in Liverpool, that means leveraging its expertise in life sciences to accelerate drug discovery.” All numbers can be cut and diced differently depending on your political perspective, but these announcements do show belief in the NHS and a vote of confidence in R&D and at a time when money is tight it is perhaps as much as we could currently hope for. We will of course monitor the impact on our sector.
Our monitoring of the brain tumour sector extends to international research news too, and you may be interested to read this piece on a study from France published in the BMJ that showed a small increased risk of intracranial meningioma in women who had used desogestrel 75 µg for more than five continuous years, but no risk in users of levonorgestrel (alone or combined with oestrogen).
All of this, and we still found time to be at meetings that:
- Pushed forward support for the Scott Arthur Private Members Bill
- Planned for new questions to be asked on the speed of MHRA decision-making and the need for MHRA and NICE to work in tandem to, where appropriate and able, expedite access for UK brain tumour patients to new therapeutics and treatment options
- Discussed collaborative working with our colleagues at The Brain Tumour Charity and the Less Survivable Cancer Taskforce
- Saw us taking our place at the Scottish Cancer Coalition
- Had us, for the first time, being a part of the Charities Medicines Access Coalition (CMAC), a coalition of 26 health charities representing millions of patients across the UK
So, a busy time, but we wouldn’t want it any other way because what we need to do demands hard work, tenacity and perseverance. To not approach every week like that would be to let you, our campaigning community, down, and we would never want to do that.
We will be back next Friday, wishing you all a peaceful time until then.
Karen, Hugh and Thomas.
