Written evidence from Brain Tumour Research (BTR0004)

BRAIN TUMOUR RESEARCH

Brain tumours kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease since 2002. This is unacceptable.

We are striving to fund a network of seven dedicated research centres whilst challenging the government and larger cancer charities to urgently invest more in brain tumour research by prioritising this as an area of unmet research need.

In addition to funding pivotal world-class research, Brain Tumour Research also represents the united campaign voice of the Brain Tumour Research group of charities. Launched in 2009, the charity Brain Tumour Research was established specifically to raise substantial funds for brain tumour research and operates as a separate entity to the member charities. These charities have committed themselves to working together to achieve a common goal, namely to raise funds for research into the prevention and treatment of brain tumours, as well as ultimately finding a cure.

Brain Tumour Research wants to see the national spend on brain tumour research increased to £30-£35m a year, in line with breast and leukaemia, if we are to advance treatments and ultimately find a cure for this devastating condition.

Why brain tumour research is so important

• 3,600 people a year die from a brain tumour.[i]
• The blood-brain barrier which protects the brain also prevents standard cancer treatments from working on brain tumours.
• With over 120 types of brain tumour, research is much more difficult. Other cancer tumours are comprised of cells that tend to be uniform in their response to treatments.
• The brain is such that even a benign tumour can kill as the brain cannot expand as the tumour grows in size.[ii]
• The number of people dying from brain tumours is increasing.
• Brain tumours kill indiscriminately; they kill men, women and children.
• The consequence of brain tumours striking so young is that the average brain tumour is responsible for over 20 years of life lost in the average patient, making brain tumours the most lethal cancer by this measure.[iii]
• 1 in 50 of all people who die under the age of 60 are dying from brain cancer.[iv]

The current brain tumour research landscape

There appears to be little understanding amongst the general public that research into cancer in the UK is driven by charities, trusts and private donations which support research undertaken in Universities and Hospitals throughout the UK. Not all of this funding is captured by the research funding database generated by the National Cancer Research Institute (NCRI) which is an umbrella body that monitors spending into cancer research within the UK. Membership of the NCRI is limited to bodies which spend more than £1million per year on cancer research.

In our 2013 report on National Research Funding, we highlighted that of the £507m spent on cancer research by the NCRI partners in 2012, just £4.9M (0.9%) was spent on brain tumour research.

The NCRI spending report was first published in 2002 and for the 11 years from 2002 to 2012, £4.5bn had been spent on cancer research by the partners of which £35m was brain tumours (0.78%) whilst £351m had been spent on breast and £290m on leukaemia.

For all cancers, there is an average of 6.9 deaths of men and women under 45 for every £1 million in research spending. For brain tumours there are 82.5 deaths under 45 for every £1million spent on research.[v]

The NCRI partners spent some 20% on research which is deemed to benefit all cancers and 40% on fundamental research which might include dealing with pain in cancer patients.

We argue that for brain tumour patients the Blood Brain Barrier, which protects the brain, also prevents standard cancer treatments from working as a significant number of drugs will not enter the brain to treat the tumours. Therefore, the knowledge built up for other cancers is not always transferable to brain cancer.

What’s more, initiatives coordinated by the NCRI are perceived to be heavily driven by larger funders, in particular Cancer Research UK, which now contributes some 70% of the UK spend on cancer research, as published in the annual NCRI report. In our subsequent discussions with government funded partners of the NCRI, with the exception of the MRC and Chief Scientists Office Scotland, we found the percentage of research spend on brain cancer was even less than we had previously thought.

• Last year the total MRC research spend was £772m
• This included £76m directly on cancer – just under 10% - yet one in two people will get cancer in their lifetime
• Of that spend on brain tumours was a welcome £2.8 million which represents 58% of the total brain tumour spend by the NCRI partners

The Government’s response to the e-petition on brain tumour research initiated by Maria Lester (nee Realf) failed to consider years of life lost when prioritising research spend. Brain tumours kill more children and adults under the age of 40 than any other cancer, yet this is not reflected in the amount of national research funding it receives – last year (2014) saw an increase but it is still just 1.5% of the entire spend on cancer research. This has to change.

Spending on brain tumour research must increase in order to support the ground-breaking science desperately needed to find a cure for this terrible disease. Well-funded, pioneering research will significantly broaden the understanding of this devastating disease, helping to reduce the unacceptable and unnecessary deaths that occur every year from brain tumours and bring us closer to ultimately finding a cure.

BARRIERS TO FINDING A CURE FOR BRAIN TUMOURS

The funding challenge

Many of the partners of the NCRI cannot fund brain tumour research because their charitable objects support specific cancers such as breast, lung, leukaemia and prostate. So we are currently reliant on specific brain tumour charities, Cancer Research UK or more general research bodies such as the MRC.  However, it is very positive to see that charities such as Children with Cancer - formerly Children with Leukaemia - are now allocating funds to childhood brain tumour research. But, the NCRI data does not take into account spend of organisations that invest less than £1million on research annually and those who choose not to become members of the NCRI.

Other barriers to research and increased research funding include:

• Anecdotal lack of funding from individual hospitals for new technologies in addition to the complex processes that the researchers have to go through to secure approval and funding from hospital Chief Executives and commissioners.
• Chicken and egg situation – researchers need to be able to demonstrate preliminary results before research funding is granted, but the results will only be collected through early stage trials and research. Early stage research should be funded by the government.
• The UK is constrained by the number of open clinical trials which include patients with brain tumours.
• There is a concern that the approval process for the Cancer Drugs Fund (CDF) was created with the aim of rejecting applications; for example applications are never validated or assessed by children’s treatment groups such as the Royal College of Paediatrics and Child Health.
• There is no funding for the development of cohort applications for funding approval and there are only two drugs approved for children on the CDF list; Avastin and Everolimus.
• Regulatory restraint: there should be a facility/mechanism for testing existing drugs for new indications and for sharing the results of this in order to speed up the process for drug development.
• There is lack of comprehensive data and data collection on brain tumours. While there are four grades of brain tumour, the ONS data only counts grades 3 and 4 tumours, which are malignant, in its figures. However, all brain tumours are potentially life threatening, regardless of their grade.
• Issues around biobanking: There is a shortage of qualified staff to transfer the tissue/tumour from the patient to the laboratory. There is also a lack of general awareness of the need for research in this area and therefore not enough researchers willing to take part in such an initiative.
• Secondary brain tumours are yet another under-investigated area. As we find cures for cancers such as breast, leukaemia and skin, patients often subsequently go on to develop secondary tumours in the brain, at which point as yet there is no cure.

FINDING SOLUTIONS

• The Government should create (or support the creation of) a national register of all site specific cancer research to track all research grants and results.
• The Government’s cancer research fund should prioritise reducing deaths under 75, therefore encouraging the development of new treatments.
• The Government should ring-fence an innovation fund from existing research budgets to kick-start the next generation of ground-breaking and lifesaving discoveries.
• The Government should devote an absolute amount to brain tumour research and promote an increase in applications for funding.
• The Government and larger charities should increase funding into brain tumours to around £30-35 million per annum in order to find a cure.
• The Government should support initiatives and legislation – such as the Off-Patent Drugs Bill – which increase drug repurposing in order to ensure that vital research is not wasted and can be used to the benefit of all patients.
• The Government should support and possibly fund centres of excellence for brain tumour research, as detailed below.
• There should be an increase in the number of tenure-tracked positions in Universities and NHS. This will ensure that young researchers who currently have fixed term posts are not lost, as currently happens. Additionally, this will increase the capacity of Brain Tumour Research-funded Centres of Excellence and ultimately the amount spent on brain tumour research.

CENTRES OF EXCELLENCE

Brain Tumour Research is dedicated to granting all available funds to continuous and sustainable life-saving research into brain tumours; supporting the UK’s largest dedicated group of laboratory-based scientists, progressing world-class research into brain tumours, working tirelessly to glean new layers of understanding about this disease.

In 2009 we pledged to establish seven Centres of Excellence dedicated to brain tumour research. In 2010, in collaboration with Member Charities Ali’s Dream and Charlie’s Challenge we established our first Research Centre of Excellence in the University of Portsmouth. Our Centres are established following an innovative application and strict international peer review process.

Professor Geoff Pilkington and his team of specialist researchers, within the Cellular and Molecular Neuro-Oncology Group at Portsmouth, are working tirelessly to find new levels of understanding in one of the most complicated and challenging battle-grounds in medicine today: to achieve a full understanding of all types of brain tumour and the methods required to cure them. His team now includes: a Principal Research Fellow, Research Fellows, Senior Research Associates and PhD Students. Their team is strengthened with MSc and Erasmus students. However, none of the senior researchers have been appointed to academic positions by the University and this means that a significant number take up substantive posts overseas, with their knowledge and experience being lost. The Centre has grown from strength to strength and is now the largest dedicated brain tumour research centre in the UK. The research is also supported by funds being brought in by other charities, including Ali's Dream, Charlie's Challenge, Headcase, the Ollie Young Foundation, the Dr Hadwen Trust, the Thorne Mason Trust and Children with Cancer.

During the last year we have established three further centres at Plymouth University, Imperial College and Queen Mary University, London. While these centres are gaining fresh ground in better understanding the nature of tumours and a consequent path to resolving them, they require additional funding from Government sources in order to develop and maximise their potential. Furthermore, we need finance in order to establish more centres nurturing the talent to develop better outcomes, and ultimately cures, for patients diagnosed with a brain tumour.

ADDITIONAL RESOURCES

For an authoritative view of the research landscape for brain tumour research, please read:

      Report on National Research Funding Brain Tumour Research, July 2013

      Report Update on National Research Funding, Brain Tumour Research, July 2014

November 2015

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