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If only brain tumour research could be funded in the same way as leukaemia and other cancers

Children with Cancer UK visit Brain Tumour Research Centre of Excellence

On March 12th Professor Geoff Pilkington of University of Portsmouth, Sue Farrington Smith and Wendy Fulcher, Chief Executive and Chairman of Brain Tumour Research respectively, were pleased to welcome Professor Denis Henshaw, Scientific Director of Children with Cancer UK on a tour of the world-class laboratory where he was able to witness first-hand the cutting edge research taking place into the disease.

Children with Cancer UK previously awarded a £196k grant to Professor of Neuro-Oncology Geoff Pilkington at our Centre of Excellence in University of Portsmouth; specifically to help further their research into finding a cure for childhood medulloblastoma.

Denis explained why this research is so vital:

“Medulloblastoma is the most common malignant brain tumour of childhood. The powerful protection that the blood-brain barrier provides means the many generic treatments used to fight cancers elsewhere in the body cannot be applied to children with brain tumours. This is one of the reasons why dedicated research is so important and why we are delighted to be funding the important work being undertaken by Professor Pilkington.”

Sue, Denis, Wendy and Geoff HR

With the funding from Children with Cancer UK, Pilkington’s team is using cutting-edge molecular techniques to unravel the biology of medulloblastoma. They are aiming to reverse an important genetic modification in medulloblastoma to develop a new gene therapy approach that can go forward to clinical trial.

Our partnership with the University of Portsmouth has gone from strength to strength since it began in 2010 and we are delighted that it is now attracting funding from larger cancer charities such as Children with Cancer and are extremely proud of the progress that Professor Geoff Pilkington and his team have made – thanks of course chiefly to the funds raised by our amazing supporters!

Read more about the incredible work being undertaken all four of our Centres of Excellence here.

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Parliamentary Question Highlights Need For Research

Brain Tumour Research would like to thank Adam Afriyie, MP for Windsor, for raising the issue of access to drugs for brain tumour patients across the NHS. Mr Afriye put down a written question for the Government on the issue on the 2nd of March, asking:

“To ask the Secretary of State for Health, what steps the Government has taken to improve brain cancer patients’ access to cancer drugs.”

HoPThe Government’s response came from George Freeman MP, Parliamentary Under Secretary of State for Life Sciences, on the 9th of March, stating that the drugs temozolomide, carmustine and bevacizumab are currently available and that the Government is reviewing the adoption of new treatments. The full response is below:

“The Government is committed to ensuring that patients have access to effective treatments, including those for brain cancers, on terms that represent value to the National Health Service and the taxpayer.

The National Institute for Health and Care Excellence (NICE) is the independent body responsible for providing advice to the NHS on the clinical and cost-effectiveness of health technologies. NICE has recommended the following drugs for brain cancers as treatment options, subject to certain clinical criteria, in its technology appraisal guidance published in June 2007:
- temozolomide (Temodal) for the treatment of newly diagnosed glioblastoma multiforme (GBM); and
- carmustine (Gliadel) implants, for the treatment of newly diagnosed high-grade glioma.

NHS commissioners are legally required to fund treatments recommended by NICE technology appraisal guidance.
Where a drug to treat brain cancer is not routinely available on the NHS, patients may be able to access it through the Cancer Drugs Fund. Bevacizumab (Avastin) is available for the third line treatment of low grade paediatric gliomas through the Fund.
We are also commissioning an external review of the pathways for the development, assessment, and adoption of innovative medicines and medical technology. This review will consider how to speed up access for NHS patients to cost-effective new diagnostics, medicines and devices.”

We thank Mr Afriyie for his question and for representing the concerns of both the patients and families facing diagnosis of this terrible disease. The response from the Government highlights how far we still have to go before the treatments that can cure or alleviate symptoms are available in the NHS and how much we need increased research funding.

As we know, 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 is allocated to this devastating disease. This means that the drugs and treatments available to patients are limited and often ineffective. This cannot continue. We are striving to fund a network of seven dedicated research centres whilst challenging the government, through continued lobbying activity, to invest more in brain tumour research and create the treatments patients need.

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Childhood Cancer Debate in House of Commons

Wednesday night saw a debate on Childhood Cancer organised in the House of Commons by Nicola Blackwood, MP for Oxford West and Abingdon. As it is to be expected from the biggest cancer killer of children, brain tumours figured heavily in a passionate debate on how the UK can improve services and the lives of children diagnosed with cancer.

Ms Blackwood introduced the debate by telling the story a young boy named Skye who tragically died aged six in 2014 from a grade IV metastatic medulloblastoma, the most commonly occurring brain tumour in children. Ms Blackwood described the stages of treatment Skye endured and how despite HoPthe best treatment available his parents lost their child. Ms Blackwood moved on to commend the recent work in child cancer that has seen eight in 10 children with cancer survive five years or more, compared with just three in 10 in the 1960s, and the level of commitment and funding from the Government to fighting cancer.

Ms Blackwood however moved on to raise several issues where care can be improved, in particular in the provision of clinical trials, data collection and research into childhood cancers. Of funding for research into brain tumours Ms Blackwood said “I am going to ask the Minister to consider whether having only 6% of childhood cancer funding going to the biggest killer in childhood cancer represents getting the balance right, and I am going to ask her to maintain investment in the Health Research Authority programme to streamline the regulation and governance processes for clinical research in the NHS.”

In response Jane Ellison, MP for Battersea and Parliamentary Under Secretary of State for Public Health, outlined the current projects that the Government is undertaking. The most interesting is a clinical trial on medulloblastoma in children and young people that is currently recruiting patients. This trial is being run jointly by the Department and the Wellcome Trust and is part of the “ground-breaking research” that Ms Ellison has said the Government is helping.

We are delighted that Ms Blackwood has joined the group of MPs in Parliament who are raising awareness of brain tumours and pressing for better outcome and thank her for organising such an important debate. As Ms Blackwood stated, Brain tumours kill more children than any other cancer yet just 1% of the national spend on cancer research is allocated to this devastating disease. This is unacceptable! We are striving to fund a network of seven dedicated research centres whilst challenging the government and larger cancer charities to invest more in brain tumour research. Help us fund the fight. Together we will find a cure.

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Improving Cancer Outcomes Backbench Debate

On Thursday 5th February MPs engaged in a debate on improving outcomes for cancer patients. The debate was arranged by the Backbench Business Committee following a bid from MPs including John Barron, Chair of the All Party Parliamentary Group on Cancer, and Rebecca Harris, Chair of the All Party Parliamentary Group on Brain Tumours. The debate was an opportunity for MPs to share ideas on how the NHS and Government can move care and treatment forward to improve cancer outcomes across the country.


John Barron introduced the debate, acknowledging the Macmillan Cancer Support analysis that the number of cancer patients in the UK is increasing, rising to 2.5 million this year, while survival rates have increased 10% since 1997, saving around 10,000 lives a year. The debate moved on to comparing survival rates across Europe and to the benefits of early diagnosis before Rebecca Harris rose to speak on brain tumours. Mrs Harris spoke passionately about Danny Green, a 10 year old from her Castle Point constituency who died in 2012 after being diagnosed from a brain tumour, and the disparity between survival rates between brain tumour and other cancers. Quoting statistics from our reports Mrs Harris stated that brain tumours are the biggest cancer killer of children and adults under 40, with five year survival rates of 18.8% compared to 50% for all other cancers, and argued that £35 million of investment into research is needed to close this gap.

Jane Ellison, Parliamentary under Secretary of State for Public Health, responded on behalf of the Government to some of the issues raised, focusing largely on early diagnosis of brain tumours and the establishment of two proton beam therapy centres set to open in 2018. We would like to thank everyone who secured and took part in this critical debate, in particular Rebecca Harris for speaking about the realities facing brain tumour patients in such an important setting. We hope that by raising the profile of brain tumours in Parliament we will no longer be fighting for a ‘forgotten’ cancer and that the resources we need to save lives will become available.

The full debate can be accessed here.

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New Cancer Research UK Figures Highlight Need for More Brain Tumour Research

Cancer Research UK released figures today, World Cancer Day 2015, showing that one in two people will develop cancer in their lifetime. The report, published in the British Journal of Cancer, has the most accurate figures and forecasts ever available and hammer home the importance of research in battling cancer.

World Cancer Day-page-001

Professor Peter Sasieni of St Mary’s College has said that “Cancer is primarily a disease of old age, with more than 60 per cent of all cases diagnosed in people aged over 65. If people live long enough then most will get cancer at some point” and goes on to state the prevention, quitting smoking and moderating drinking for example, of cancer is the best way. Whilst this is true for the majority of cancers, less than 40% of those diagnosed with cancer are under the age of 65, we have continually found in our analysis that it is not the case for brain tumours. 52% of brain tumour patients are under 65, with brain tumours the largest cancer killer of children. We are concerned that studies such as the one today forget the effects of cancers on children and the young and the urgent need for more research into new cancer treatments for those cancers.

As our 2013 and 2014 reports have shown, brain tumours are a young person’s disease, responsible for 20 years of life lost in the average patient. We believe that more focus needs to be given to cancers that effect the young disproportionately so that all cancer patients have the opportunity to reach old age. This focus has to take the form of increased research – not prevention – because we simply have no way to prevent brain tumours as we do not yet know the cause.

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 is allocated to this devastating disease. This is unacceptable! Our understanding of the biology of the tumour has to be advanced soon if we are to make a meaningful attempt at reaching the survival rates of other cancers, rates that have doubled in the last 40 years, and we call on Cancer Research UK to join us in our fight against brain tumours.

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