AND GET US CLOSER TO A #BrainTumourCure
Brain Tumour Research is calling for the UK Government to declare brain tumours a clinical priority, enabling research funding into brain tumours to become game-changing across the translational pipeline.
Brain tumours kill more children and adults under the age of 40 than any other cancer
Research investment leads to innovation and clinical trials, resulting in new knowledge, new techniques, new therapeutics and improved options and outcomes for patients. If there isn’t investment in research clinical advancements will not happen.
Since records began in 2002, the national investment in brain tumour research still represents just 1% of cancer research funding into this devastating disease.1
Even when money is made available for research, it is failing to be deployed to the scientists who hold the key to unlocking the uniquely complex puzzle that brain tumours pose.
In 2018, the UK Government made £40 million available for allocation to brain tumour researchers.3 The then Secretary of State for Health, Jeremy Hunt, said at the time:
“Our ambition is to deliver a big uplift in the funding of brain cancer research, while galvanising the clinical and scientific communities to explore new avenues for diagnosis and treatment in the future. It is a chance to create a genuine step change in survival rates for one of the deadliest forms of cancer.”4
In 2024, £28 million of this total has still yet to be deployed, it has yet to fund researchers, and it has yet to provide any new hope for patients and their families.5
The response to concern about the lack of deployment has been that everything that is fundable is funded but in the interests of improving the stark facts around brain tumours we need full deployment of available funds, and this means doing things differently.
“To defend funding only the fundable is not acceptable. All we do is defend existing processes and systems that have proven ineffective. The fact that little progress has been made in the treatment and cure of brain cancer sufferers demonstrates this. We must act in the interest of brain tumour patients, and have a braver, more creative and determined approach to address the lack of deployment of research funding and punch through all unnecessary and unacceptable barriers to research.”
Derek Thomas MP, Chair, All-Party Parliamentary Group on Brain Tumours
Brain Tumour Research is calling on the UK Government to invest properly in research into the cancer that kills more children and adults under the age of 40 than any other.9 This manifesto makes it clear that other cancers in recent decades have seen increased research investment and associated improvements in survival. Now is the time for us to make the same investment in brain tumours and find a cure for this devastating disease.
We are asking for six achievable and impactful commitments:
1 Provide a detailed response to the All-Party Parliamentary Group on Brain Tumours inquiry report, Pathway to a Cure, 7 and an update on the plans to action the recommendations within the report
2 The Government to declare brain tumours a clinical priority and to approach improving options and outcomes for brain tumour patients with appropriate urgency
3 Doubling the annual research spend across adult and paediatric brain tumours from the 20/21 total of £17.6 million1 to £35 million per year by 2028
British research institutions deliver world-class research and have the potential in the next five years to make a real difference for brain tumour patients. Investment in research has a positive return both economically and socially. Now is the time to make that investment. Annual research spend of £35 million represents less than 0.003% of UK Government expenditure8 – yet brain tumours kill more people under the age of 40 than any other cancer.9 We call on UK Government to commit to the appropriate investment to find a cure for this devastating disease.
If the commitments asked for in this manifesto are delivered by the UK Government, we will save lives and see significant progress in finding cures
Dan Knowles CEO
4 Develop a roadmap for full national deployment of the £40 million research funds made available in 2018, in partnership with Brain Tumour Research
5 Implement a monitoring system for this spend, with decision-making authority, to be overseen by a new Brain Tumour Research Institute – made up of clinicians, researchers and charities – specifically targeted with funding research that will drive both discovery and translational research, so we find cures
6 Increased participation of adult and paediatric brain tumour patients in clinical trials
Dan Knowles CEO
Brain tumours are indiscriminate; they can affect anyone at any age
Glioblastoma (GBM) patients face a stark prognosis –can be as little as 15 months 11
Brain tumours continue to kill more children than leukaemia, more men under 70 than prostate cancer, and more women under 35 than breast cancer9
Brain tumour patients affected by this disease experience the lowest recruitment onto clinical trials13
Any vision and action to reduce the cost of brain tumour care and improve outcomes for all brain tumour patients must shift focus from funding care to funding a cure.
Each year, more than 12,000 people are diagnosed with a brain
tumour 9
Estimated annual economic cost of brain tumours in working age people is £578 million, ranking third highest among more common cancers, behind lung (£1.2 billion) and breast (£635 million)12
No new treatments for brain tumour patients for two decades
Incidences of and deaths from brain tumours are increasing 2
Fewer than 13% of those diagnosed with a brain tumour survive beyond five years, compared with an average of 54% across all cancers10, 6
Brain tumour survivorship can come with a unique and heavy burden in the combined loss of potential, earnings, and mobility, along with independence impairments12
Improved treatment options rely on increased investment into discovery research –only then can we develop new drugs, surgical innovations, and clinical trials
Much better integration between research, academia, healthcare delivery and funding for clinicians is needed
It is only with better, research enabled, tailored clinical options for brain tumour patients that we will reduce the cost of their care and increase their survivorship, thus enabling them to have the best chance, post-treatment, to continue to fulfil their potential and integrate as productive members of society.
The bodies responsible for funding research, the Department of Health and Social Care’s National Institute for Health Research (NIHR) and the Department of Science, Innovation and Technology’s Medical Research Council (MRC), deliver to their singular strategies, processes and funding calls. There are no specific government-funded brain tumour awards adequately resourcing and funding discovery, translational and clinical research.
Currently the length of the translational pipeline from basic science (MRC) through to clinical trials (NIHR) and beyond (Innovate UK) is not joined up and therefore is not supporting the translation of research into treatments for brain tumour patients.
“There is clear evidence that when special consideration is given to a particular disease, it leads to increased funding that then builds further momentum, attracting and leveraging further funding.16
“As befits a clinical priority, it is time for innovation and proactivity in the brain tumour decision-making space. We look to UK Government funding bodies to develop schemes that attract the brightest minds and supports them through a process that delivers well-funded and progressive research that will impact on brain tumour patients.
“Where currently there is limited money and a limited number of clinical trials with sub-optimal take up, we need to remove barriers from the pathway to a cure and learn from where progress has been made, and challenge old funding models that have resulted in stagnation and frustration.”
Dr Karen Noble, Brain Tumour Research Director of Research, Policy and Innovation
Dr Karen Noble, Director of Research, Policy and Innovation
“The urgent need for more investment in brain tumour research has not gone away. Charities have suffered a loss of income during the pandemic and are now suffering further due to the cost-of-living crisis. They should not be relied upon to provide funding to advance treatments for brain tumours; government funders should be taking a leading role. Having seen the remarkable speed at which joined-up thinking led to treatments for COVID-19, much could be achieved if UK Government treated brain tumour research as a critical priority.”
From the Executive Summary of the All-Party Parliamentary Group on Brain Tumours inquiry report entitled, Pathway to a Cure –breaking down the barriers, which was published in February 2023.
The UK Government must lead the way in building critical mass and capacity, training the next generation within leading research centres and attracting multidisciplinary researchers into the field
Campaigners hand in our petition to Parliament
We call on the Department of Health and Social Care (DHSC) to respond to the All-Party Parliamentary Group on Brain Tumours inquiry report.
We ask that the responsible Minister within the DHSC provide a full response to the report, Pathway to a Cure –breaking down the barriers. This should include an update on the Department’s plans to deliver on the recommendations made within the report.
We call on the DHSC and the Department of Science, Innovation and Technology (DSIT) to declare brain tumours a clinical priority and partner with Brain Tumour Research to develop a roadmap for full deployment of the £40 million made available in 2018.
We ask that the DHSC and the DSIT declare brain tumours a clinical priority and develop a delivery plan to provide adequate resourcing and funding of discovery, translational and clinical research by 2025. This should include a roadmap to the full deployment of the £40 million made available in 2018.
To support the roadmap to funding deployment, the DHSC, the National Institute for Health and Care Research, and Medical Research Council should partner with Brain Tumour Research and the wider research community to unblock the current funding bottleneck.
The monitoring of this spend, with decision-taking authority, to be overseen by a new Brain Tumour Research Institute – made up of clinicians, researchers, and charities – specifically targeted with funding research that will drive both discovery and translational research.
The DHSC should take learnings from research spending in motor neurone disease, dementia, and other less survivable cancers, to understand how challenges have been overcome and can be translated to brain tumour research.
The UK Government to commit to and maintain annual research spend on brain tumours of £35 million per year by 2028 and continue to grow this investment further into the 2030s.
We call for increased participation of brain tumour patients in clinical trials.
We call on the UK Government to join us in increasing access to clinical trials for patients with brain tumours and support the ambition for at least 15% of brain tumour patients to be participating in a clinical trial by 2028. We must make the research environment more conducive for clinicians to enter and remain. Their experiences reflect the patient experience, but ring-fenced research time must be actively structured in, despite increasing workloads. We ask the UK Government to ensure that brain tumour research is embedded in national workforce planning. Protected research time for clinicians to contribute to clinical trials or undertake research should be provided. To not do this is to focus on care at the expense of cure. Research time needs to be integrated into clinical practice, not as something separate that is undertaken as a sacrifice.
If the commitments asked for in this manifesto are delivered by the UK Government, we won’t continue to hear stories of premature loss, unimaginable distress and a complete lack of hope
“When Fin was diagnosed with his tumour, and as the horror began, we found out that brain tumours kill more children than leukaemia – we had no idea. It makes me so angry that the money to further brain tumour research made available in 2018 isn’t all with researchers in 2024. We should be doing all we can so that no more families go through what we endured, but we seem to be standing still and that breaks my heart.”
Penny Church, mother of Fin, forever 11
“Research gave my son hope. The campaigning we have done since Stephen died in August 2014 at the age of 26 and the impact we have had since, has given me the belief that he didn’t die in vain.”
Peter Realf, Brain Tumour Research Campaigner
We already have the most active, driven, tenacious and personally committed campaigners and we call on them, and anyone new to the UK brain tumour community, to join with us by:
• Attending Parliamentary events and asking their MP to join them at these events
• Writing letters to their MP to update them on matters relating to the brain tumour community or do this by attending the MPs’ surgeries
• Taking this manifesto to their prospective Parliamentary Candidates ahead of the next UK General Election with the ask of their prospective MP to declare better funding for brain tumour research a key pillar of their health portfolio, should they be elected to Westminster, and encourage its adoption into their party’s manifesto
We call on the UK brain tumour community in its entirety to unite with us to amplify our voice because together we can become an unstoppable force for change
By 31st October 2023, 81,336 people had signed a petition launched by Brain Tumour Research in April 2023 demanding change.17
Brain Tumour Research is the leading voice of the brain tumour community in the UK.
We are the only national charity in the UK focused on finding a cure for all types of brain tumours through campaigning to increase the national investment in brain tumour research to £35 million per year by 2028, while fundraising to create a network of seven sustainable Brain Tumour Research Centres of Excellence across the UK.
Of the hundreds of All-Party Parliamentary Groups (APPGs) the APPG on Brain Tumours (APPGBT) has been noted as “one of the most effective” 18
As secretariat for the APPGBT, we support its diligence, influence and commitment to delivering meaningful improvements for UK brain tumour patients.
We know that our community is sincerely grateful for the work that the APPGBT has done and continues to do.
This manifesto builds on our research aims to: Grow capacity – attract and retain talented researchers to increase the quantity of brain tumour research in the UK.
Build infrastructure – support the research infrastructure connecting and improving coordination across the UK brain tumour research community.
Accelerate treatments – improve the quality of brain tumour research in the UK and support innovative research to generate new treatments for brain tumours.
We will continue to hold the UK Government to account around the allocation of research funding and evidence of progress
Peter Realf presents at the House of Commons
REFERENCES: [1] National Cancer Research Institute. (2024, February 8). Cancer research funding data – NCRI. NCRI. https://www.ncri.org.uk/how-we-work/cancer-research-database/funding-data/ [2] Cancer Research UK. (2023, October 9). Brain, other CNS and intracranial tumours survival statistics. https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/brain-other-cns-and-intracranial-tumours/survival#heading-Zero [3] Department of Health and Social Care. (2018, May 14). Government announces £40 million for brain cancer research in honour of Tessa Jowell. GOV.UK. https://www.gov.uk/government/news/government-announces-40-million-for-brain-cancer-research-in-honour-of-tessa-jowell [4] Department of Health and Social Care. (2018a, February 22). Brain cancer research to receive £45 million funding. GOV.UK. https://www.gov.uk/government/news/brain-cancer-research-to-receive-45-million-funding [5] NIHR Open Data – Funded portfolio. (2024, February 20). https://nihr.opendatasoft.com/explore/dataset/infonihr-opendataset/table/?disjunctive.funder&disjunctive.project_status&disjunctive.programme&disjunctive.programme_type&disjunctive.programme_stream&disjunctive.acronym [6] Cancer Research UK. (2023, September 27). Cancer survival statistics for all cancers combined. https://www. cancerresearchuk.org/health-professional/cancer-statistics/survival/all-cancers-combined#heading-Zero [7] The All-Party Parliamentary Group on Brain Tumours. (2023, February). Pathway to a cure – breaking down the barriers. https://cdn.shopify.com/s/files/1/0615/3122/6285/ files/BTR_2667_APPGBT_Briefing_Pathway_A4_36pp_2023_Singles_HQP.pdf?v=1697017277 [8] Public spending statistics: November 2023. (2023, November 8). GOV.UK. https://www.gov.uk/government/statistics/public-spending-statistics-release-november-2023/publicspending-statistics-november-2023 [9] Cancer Registration Statistics, England 2020 – NHS Digital. (2022, October 20). NHS Digital. https://digital.nhs.uk/data-and-information/publications/statistical/cancer-registration-statistics/england-2020 [10] Cancer Survival in England, cancers diagnosed 2016 to 2020, followed up to 2021 – NHS Digital. (2023, February 16). NHS Digital. https://digital.nhs.uk/data-and-information/publications/statistical/cancer-survival-in-england/cancers-diagnosed-2016-to-2020-followed-up-to-2021 [11] Kotecha, R., Odia, Y., Khosla, A. A., & Ahluwalia, M. (2023). Key clinical principles in the management of glioblastoma. JCO Oncology Practice, 19(4), 180–189. https://doi.org/10.1200/op.22.00476 [12] The All-Party Parliamentary Group on Brain Tumours. (2018). Brain tumours: a cost too much to bear? Brain Tumour Research. https://cdn.shopify.com/s/files/1/0615/3122/6285/files/18-11-20-brain-tumours---a-cost-too-much-to-bear_final-report_low-res-singles.pdf?v=1699865103 [13] Clinical trials in cancer: Barriers in access to clinical trials, especially in light of the COVID-19 pandemic. (2021, December). The Institute of Cancer Research. https://www.icr.ac.uk/media/docs/default-source/corporate-docs-accounts-and-annual-reports/policy-statements/clinical-trials-in-cancer.pdf?sfvrsn=d2a92b69_8 [14] Transforming health through Innovation: Integrating the NHS and academia. (2020, January). The Academy of Medical Sciences. https://acmedsci.ac.uk/file-download/23932583 [15] Sylvester, R. (2024, February 7). The Times Health Commission’s 10 recommendations to save the NHS. The Times. https:// www.thetimes.co.uk/article/the-times-health-commission-recommendations-nhs-dzhvfzbs6 [16] Cancer Research UK. (2023b, December 21). Research opportunities in cancers of unmet need. https://www.cancerresearchuk.org/funding-for-researchers/research-opportunities-in-harderto-treat-cancers#portfolio1 [17] Brain Tumour