Hopes of a future cure for brain cancer were given a huge boost after a pioneering UK centre received a £2.5million windfall to speed up clinical trials in children. The Brain Tumour Research charity provided the cash injection in a bid to unlock successful treatments for gliomas – the deadliest of all childhood cancers.
Experts led by Professor Chris Jones at The Institute of Cancer Research will now try to end a disease that blights countless lives, but receives next to no money.
The funding comes less than a week after the Daily Express was praised by MPs for raising a “missing millions” scandal – where families are forced to find tens of thousands of pounds to send children abroad for unproven therapies.
Dr Karen Noble, of Brain Tumour Research, said: “The aim is this work will lead to trials within the next five years, so we can give real hope to families in the future.
“The current situation means that people already facing the most distressing circumstances often have no option but to search for and fund trials abroad with all the expense, upheaval and uncertainty that brings.
“We are grateful to our loyal supporters who have made this milestone possible. But we need the Government to step up and not rely so much on investment from charities.”
Meanwhile, the future for brain tumour sufferers remains bleak. Some £40million for research was promised but just £15million spent since the late Labour MP Tessa Jowell died of the disease in 2018. In that time more than 25,000 people have died.
A devastating report from the All-Party Parliamentary Group on Brain Tumours said the current research funding system needed to be joined up from basic science through to clinical trials.
It said funding for childhood brain cancer research, where survival rates for the most aggressive tumours have not changed for
decades, should be untouchable.
Campaigners hope Chancellor Jeremy Hunt will announce more money to tackle the spiralling diagnosis and treatment crisis in tomorrow’s Budget.
Prof Jones will spearhead a team at the newly-created Brain Tumour Research Centre of Excellence in Sutton, Surrey, set up to research childhood brain tumours.
He said: “Our lab is working day in, day out to unravel the underlying biology of these dreadful tumours and hopefully uncover new ways to attack them. This invaluable support will help fuel new discoveries and pave the way to smarter, kinder treatments for children.”
Historically, just one per cent of the national cancer research spend has been allocated to brain cancer.
Options for children deemed high-risk are so limited that for some types of high-grade glioma, less than five per cent of patients survive more than two years. The average survival for the vast majority is nine to 18 months.
A year after losing their 23-year-old daughter Amani to a brain tumour, Yasmin Stannard and Khuram Liaquat continue to fight for much-needed investment in research.
Amani, a first-class law graduate, was diagnosed with a glioblastoma – the most common type of primary malignant brain tumour in adults – after collapsing at home in Luton, Beds, on her 22nd birthday in April 2020.
She underwent numerous surgeries, chemotherapy and radiotherapy, but after just four months doctors said her tumour had grown.
Having exhausted all options in the UK, Amani’s family decided to source life-prolonging treatment from Germany for which they, with the help of relatives, friends and strangers, raised more than £100,000 in 24 hours.
Despite her declining health, Amani continued to campaign and raise awareness about the lack of funding.
She died in February 2022, six weeks before Tom Parker, lead singer of band The Wanted, with whom she formed a friendship over their shared diagnosis.
Her parents continue the fight in her memory. Yasmin said: “Far too many families are being destroyed.
“If the Government had made available the £40million it pledged in 2018 then maybe a breakthrough could have been found to save our daughter, or at least give us more than the 22 months we had from diagnosis.
“It continues to invest in research for other cancers but brain cancer has been left behind and forgotten.
“In a speech by Amani five months before she passed, she asked, ‘Why is the biggest cancer killer of children and adults under 40 being ignored? Does my life not matter? How many more young people have to be robbed of their future until something is done?’”
Along with my colleagues who sit on the All-Party Parliamentary Group on Brain Tumours, I was heartened by the Government’s 2018 promise of millions of pounds for investment in research.
But five years on just £15million of the pledged £40million has reached researchers who hold the key to finding a cure for this devastating disease which kills more children and adults under the age of 40 than any other cancer.
Our APPG report, which prompted a landmark debate in the House of Commons last week, calls on the Government to recognise brain tumour research as a critical priority and to ring-fence £110million of current and new funding.
Crucially, we are also calling for funding bodies to ring-fence funding for research into childhood brain tumours where survival rates for the most aggressive types have remained unchanged for decades.
The current situation, which leads to desperate families seeking costly and unproven treatment abroad, simply cannot continue.
The blunt truth is that while we have seen real advances in the treatment of certain types of cancer, when it comes to brain tumours there has been almost no progress at all.
One cannot fail to be moved by the stories of courage, determination and heartbreak of families told there is no treatment available in the UK for their desperately sick child.
They have no other path but to somehow get together vast sums of money to give them a glimmer of hope and to feel that they have travelled every possible path to give their child more time and a better quality of life.
The Government must step up and make brain tumour research a critical priority.
We must do better, particularly by our children.
The funding for the new Brain Tumour Research Centre of Excellence at the Institute of Cancer Research is great news.
However, we will keep up pressure for the Government and other funding bodies to speed up the pathway to a cure by investing more and challenging the research funding system in order to be joined up from basic science to clinical trials.
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