Twenty years on from her father’s death due to a glioblastoma, Grace Fynn finds out why brain tumour research has received just one per cent of the national spend on cancer research since 2002.
“Why would someone who was really talented go into a world where the funding was poor?”, says Hugh Adams, head of stakeholder relations at Brain Tumour Research.
Your chances of living for ten years or more after being diagnosed with cancer in the early 1970s were 25 per cent, but by 2018 that number was nearer 50 per cent.
For cases of breast cancer, ten-year survival rates have risen from 42 per cent in 1971 to more than 76 per cent in 2018.
But the same cannot be said for brain tumours.
Survival rates for the most dangerous brain tumours have increased by only 13 per cent since the 1970s.
And, statistics from The Brain Tumour Charity reveal that brain tumours are the biggest cancer killer of the under 40s.
As someone who has lost a parent to this disease, these numbers are particularly startling.
It has been twenty years since my dad died from a Stage Four Glioblastoma when I was two years old, and yet it feels like very little has improved.
The loss has followed me through my life, shaping my decisions, impacting my outlook and giving me one hell of a chip on my shoulder.
But, there are organisations out there that are fighting to find a cure, including Brain Tumour Research UK.
The charity is dedicated to finding cures for all types of brain tumours, says head of stakeholder relations, Hugh Adams.
The field faces significant difficulties when it comes to receiving funding, which has a dramatic impact on progress in research for a cure.
Hugh said: “Brain tumour research has been left behind.
“Poor levels of funding mean that you continue having poor levels of funding because you’re not able to show progress.”
This means that funding applications are often difficult as researchers do not have proven results to incite investors.
Hugh describes brain tumour research as: “uniquely complex, uniquely difficult.”
Another organisation working hard to find a cure is The Brain Tumour Charity.
They take on brain tumours on three fronts: campaigning for change, offering comprehensive support services and funding research.
A spokesperson for the charity said: “The Brain Tumour Charity is calling for a government-led National Brain Tumour Strategy – a single, coordinated approach- to save lives and reduce the long-term economic costs of brain tumours on patients, families and the taxpayer.”
But, a significant obstacle to such large-scale campaigning is a lack of long-term brain tumour survivors.
Only one in five people diagnosed with brain cancer in the UK survive ten years or more, compared to one in two for cancer overall.
And, you are four times less likely to survive to five years following a brain tumour diagnosis compared to the average for all cancers.
Hugh said: “Diagnosis is so shocking it comes completely out of the blue, you don’t have time to become a campaigner.
“The successful cancer campaigners are people who are long term survivors and we don’t have long-term survivors of glioblastoma.”
My own father was diagnosed with a stage four glioblastoma in February 2005 following an emergency admission.
Dad died just seven months later, one month after my second birthday.
This short prognosis is typical of brain tumours and is reflective of the lack of investment in research.
When it comes to the research itself and the people that conduct it, the lack of money in the field makes it an unattractive one for budding scientists.
Hugh explains: “If you fund it the people will come.”
But, the charity faces more barriers than just ones relating to research- getting the attention of Governments can also prove to be a problem.
In 2018, following the death of former Labour MP and Culture Minister, Tessa Jowell, the Government published a report on how to increase funding for research into the illness.
The report found insufficient research into brain tumour cures, leading the Government to allocate £40 million via the National Institute for Health Research (NIHR).
But, as Hugh points out: “made available is one thing, being deployed is something else.”
A few years after this money was made available, the charity asked the NIHR what the money had been spent on- only to discover that just £9m of the £40m had been spent.
Part of this delay in spending was due to the reliance on government departments working cohesively.
Hugh also revealed that this money is still yet to be fully deployed.
Hugh said: “They [government departments] need to work absolutely seamlessly for this to work, but government departments do not work seamlessly.”
Despite this, there has been some progress when it comes to campaigning Government.
The All Party Parliamentary Group on Brain Tumours (APPGBT) was established in 2005 and it’s secretariat is provided by Brain Tumour Research, a significant success for the charity.
It’s 2023 report, ‘Pathway to a Cure’, aimed to break down the barriers to brain tumour research and to make brain tumours a priority for the Government.
Hugh said: “Through the campaigning work and through the advocacy and through the shouting loud and writing letters to MPs and providing the secretariat to the APPG, I think we’ve got to a place now where things are moving on.”
Hugh’s more positive outlook is buoyed by the possibility of the Rare Cancers Bill, currently in Parliament, which could become law soon and would make a significant positive impact on brain tumour research.
So, despite decades of inaction and stagnation when it comes to brain tumour research, it appears we may be turning a corner.
