The Brain Tumour Charity is largest dedicated brain tumour charity globally. We are committed to fighting brain tumours on all fronts through research, awareness and support to save lives and improve quality of life. We fund pioneering research to find new treatments, improve understanding, increase survival rates and bring us closer to a cure. We raise awareness of the symptoms and effects of brain tumours, to reduce diagnosis times and make a difference every day to the lives of people with a brain tumour and their families. We provide support and information for anyone affected to improve quality of life. Defeating Brain Tumours: Our Strategy 2015 – 2020 defines our priorities over the next five years, to meet our goals of doubling survival and halving the harm that brain tumours have on quality of life.
We welcome this opportunity to respond to the Petition Committee’s inquiry into funding for research into brain tumours.
Brain tumours are the biggest cancer killer of children and adults under 40 (1), reducing life expectancy by, on average, 20 years - the highest of any cancer (2). 60% of people diagnosed with a high grade brain tumour will die within one year and just 19% will survive for five years or more (3). These five year survival rates are amongst the lowest of all cancer types.
Whilst survival has doubled across all cancers, changes in survival rates for adults with a brain tumour have improved little compared with other cancers in over 40 years. Brain tumours saw an increase of 10% in ten year survival since 1971-21, the third poorest change in survival across all cancers (4). We are concerned that the improvements in average survival across all cancers, driven largely by the common cancers, masks the relatively poor performance for cancers of unmet need, including brain tumours.
Brain tumours can also have a devastating impact on quality of life. For example, 91% of people with a brain tumour report that it affects their cognitive or emotional health; 28% experience personality changes; and 29% have mobility problems. The symptoms and treatment side effects in turn cause problems for the working and home life of those affected, with 28% having to give up work entirely, 29% feeling severely isolated and 2 in 3 of those affected seeing a negative impact on their relationship with their partner (5).
Low and high grade tumours
Brain tumours are graded according to how quickly they are likely to grow and spread to other parts of the brain or spinal cord. Low grade tumours in the brain can still have a serious impact on quality of life, however people affected by a low grade tumour (often misleadingly labelled as ‘benign’ tumours) frequently report feeling as if their condition is not taken as seriously. As low grade tumours are not included within a strict definition of cancer, their epidemiology cannot be monitored through national cancer datasets (the survival statistics presented in the section above are for high grade tumours only). They may also lose out in terms of research funding, although this is complex to determine as some research will provide insights into both low and high grade tumours.
National Cancer Research Institute (NCRI) partners’ spend
In 2014, 1.5% of cancer research spend by Government and the largest cancer charities such as CRUK was used for research into brain tumours (£7,679,072 of a total of £497,982,061) (6). In addition to site specific spend, there is a certain amount of fundamental research that may underpin understanding of cancer across a number of sites. Brain tumour research funding as a proportion of site specific spend in 2014 was 3.3% (6).
Over the past forty years the proportion of people who survived for ten years after a leukaemia diagnosis has increased more than sixfold (7). This success badly needs to be emulated for brain tumours, and will depend on a co-ordinated research effort. It is telling that the proportion of site specific spend on leukaemia has ranged from 14.4% - 17.5% since 2002, second only to breast cancer in terms of the proportion of dedicated site specific research spend (6).
The Brain Tumour Charity’s research programme
We have invested over £13million and have committed to investing £5.2million to our current research portfolio over the next four years. A Cure Can’t Wait: Our Research Strategy commits to a further investment of £20 million over the next five years, funding research into five priority areas:
Biobanking: We want to accelerate progress in research by increasing the collection of and access to brain tumour tissue.
Early diagnosis: We want to improve patient outcomes by ensuring early and accurate diagnosis.
Understanding brain biology: Improving our understanding of the biology behind brain tumours is essential to the development of new treatments.
Catalysing new treatment: We want to catalyse the translation of discoveries made in the lab to clinical benefits for patients.
Enhancing quality of life: We want to improve quality of life for all affected by brain tumours and ensure high quality care.
The need for diverse funders
Although our own research commitment is an important part of the combined effort to improve survival and quality of life for people with a brain tumour, it should not be left to charities to step in where Government funding is insufficient. There are a number of reasons why continued Government commitment is essential to maximise the return on our investment for people with a brain tumour.
Firstly, we have a duty to our donors to ensure that as much as possible of the money that they give goes towards the activities that they want us to invest in. This means that, like most charities, we are not able to pay for the full economic cost (FEC) of the grants that we award. Although top-up support to provide parity with Research Councils grants is available to institutions in the form of the Charity Research Support Fund (CRSF), the value of this fund has been falling in real terms over the last few years. There is a risk that this may make charity grants less attractive.
We often seek to co-fund projects alongside other charity and Government funders. For example, we fund a number of Clinical Research Training Fellowships with the Medical Research Council (MRC); and along with Children with Cancer UK and Great Ormond Street Hospital Children’s Charity we fund the INSTINCT strategic research network, which brings together leading clinical and research programmes in high-risk paediatric brain tumours. The benefits of co-funding arrangements are not only financial, also allowing funders to share risk, contribute to complementary elements of a research programme, and share skills and expertise. Clearly this sort of funding model can only happen in an environment with a diverse network of different funders.
The perception of a commitment to funding and the creation of a positive research environment in a particular field can help to attract the best international researchers to the UK. This may in turn result in an increase in high quality, successful applications to open funding calls and the reputation of UK centres as being internationally competitive.
Whilst it is true that grants from the National Institute for Health Research (NIHR) and the Research Councils are open to applications from researchers working on any condition and judged in open competition, the priorities of institutions and individual researchers also will be influenced by perceptions of Government priorities. Success breeds success, with grants awarded in a theme attracting researchers to work in that area. Actions such as the designation of centres as NIHR Biomedical Research Centres (BRCs) may help to contribute to the positive perception of the UK as a desirable place to conduct brain tumour research.
There is clearly a need for research-led improvements in our understanding of, and treatments for, brain tumours. We are not suggesting that lower quality applications should be prioritised, but the Government should support the recruitment and retention of outstanding scientists working in neuro-oncology.
There is a clear unmet need for improved outcomes for people with brain tumours, with improvements in survival lagging far behind that of other cancers. This can only happen through a sustained investment in excellent research. Government should support the recruitment and retention of outstanding scientists, and funders should work with the UK brain tumour research community to address the shortfall in applications that are successful in open competitions. This presents an opportunity for the UK to gain a reputation as an excellent place to conduct brain tumour research, with benefits for institutions and patients alike.
1. Cancer Research UK. Cancer mortality by age [Internet]. Cancer Research UK. [cited 2015 Oct 23]. Available from: http://www.cancerresearchuk.org/health-professional/cancer-statistics/mortality/age
2. Burnet NG, Jefferies SJ, Benson RJ, Hunt DP, Treasure FP. Years of life lost (YLL) from cancer is an important measure of population burden--and should be considered when allocating research funds. Br J Cancer. 2005 Jan 31;92(2):241–5.
3. Cancer Research UK. Brain, other CNS and intracranial tumours survival statistics [Internet]. 2015 [cited 2015 May 19]. Available from: http://www.cancerresearchuk.org/cancer-info/cancerstats/types/brain/survival/#one
4. Cancer Research UK. Cancer Statistics Report: Cancer Survival [Internet]. 2014. Available from: http://publications.cancerresearchuk.org/downloads/Product/CS_REPORT_SURVIVAL.pdf
5. The Brain Tumour Charity. Losing Myself: The reality of life with a Brain Tumour [Internet]. 2015. Available from: https://www.thebraintumourcharity.org/about-us/our-publications/losing-myself-reality-life-brain-tumour/
6. National Cancer Research Institute. NCRI Cancer Research Database [Internet]. Available from: http://www.ncri.org.uk/what-we-do/research-database
7. Cancer Research UK. Leukaemia survival statistics [Internet]. 2015 [cited 2015 May 19]. Available from: http://www.cancerresearchuk.org/cancer-info/cancerstats/types/leukaemia/survival/
October 2015