Who we are
We are Brain Cancer Justice (BCJ) - a group of patients, families, and advocates united against one of the UK’s deadliest and most neglected cancers.
Brain cancer is ignored, underfunded, and misunderstood. Despite being the biggest cancer killer of children and adults under 40, brain cancer remains chronically under-researched. Without meaningful investment and commitment to innovation, it continues to be a death sentence.
At least 88,000 children and adults are estimated to be living with a brain tumour in the UK today. Each year, over 12,000 more people are diagnosed with a primary brain tumour - that is 33 families every single day hearing the words you never want to hear.
While mortality rates for most other cancers have dropped by over 20% in recent decades, brain cancer survival rate has stagnated and remains shockingly low. Gut-wrenchingly, 88% of patients die within five years, and for those with glioblastoma, the most aggressive form, it is 95%.
Since 2002, brain cancer has received just 1% of the national cancer research budget. At this rate, it could take a century to reach the kind of progress already achieved for other diseases.
Fewer than 5% of brain tumour patients access genome sequencing - often the gateway to clinical trials and personalised treatments.
Whilst our neighbour, Ireland, ranks 5th out of 33 wealthy nations for five-year brain cancer survival, the UK ranks 25th. We are seeing patients scrape money together to seek hope abroad.
Successive governments have known the scale of the crisis but have failed to act.
Barriers to progress – including poor research uptake by the National Institute for Health and Care Research – remain unaddressed. As a result, survival rates have barely improved in decades.
In 2016, following a 120,000+ petition achieved by the Realf family, the Petitions Committee chair, Helen Jones MP said it was “a collective failure that has gone on under different governments… In the course of our research, we have been humbled and shocked at the pitiful amount of funding.”
Following this petition and activity by Parliamentarians such as Dame Tessa Jowell, the government announced that it would spend £20 million, over a five year period, on brain tumour research. In May 2018, after Dame Jowell’s death from a brain tumour, the Government funding was doubled to £40 million.
Seven years later… It’s believed only £12 million out of the £40 million has been spent.
The disconnect between promises made and funding, delivered has caused deep frustration and mistrust. Patients are still dying while other cancers treatments advance.
We want an end to repeated government failures to deliver funding.
We do not want to see a repeat of previous decades. Our desire is for a brain tumour diagnosis to go from ‘Terminal to Treatable’.
We are urging the Government to:
1. Immediately release the full £40 million pledged and ensure it reaches frontline scientists.
2. Increase brain tumour research funding beyond the current 1% of the national cancer research budget, in line with the scale of the crisis.
3. Mandate genome sequencing and expand access to clinical trials for all brain tumour patients.
4. Accelerate diagnostics and treatment pathways so families are not left watching loved ones deteriorate while waiting.
Behind every statistic is a person: a child waiting for a brain scan; a partner clinging on to hope; and a family watching precious time with a loved one slip away. This disease is indiscriminate, it can affect any one of us, at any age, without warning.
We cannot accept another decade of silence and empty promises.
We cannot accept a future where brain tumour patients are left without hope.
Let’s end delays in allocating funding, scanning, and diagnostics. Research offers the only real hope of dramatic improvements in the management and treatment of brain tumours.