THE CHILDREN'S BRAIN TUMOUR CHARITY

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Landmark report shows child survival rates have remained unchanged for decades

In the battle against cancer, where progress is measured in breakthroughs and advancements, a disheartening reality persists—childhood brain tumours continue to claim more lives among children and adults under 40 than any other cancer. Following a landmark report which showed child survival rates have remained unchanged for decades, MP’s are demanding immediate action, declaring brain tumour research a “critical priority.” The call for action, spearheaded by Derek Thomas, chair of the all-party parliamentary group on brain tumours, sheds light on a concerning lack of progress in addressing a crisis that has persisted for decades.

£20 million fund for brain tumour research

In 2015, the Realf family, who were sadly affected by the impact of brain tumours, presented a petition signed by 120,129 individuals, urging an increase in national funding for brain tumour research. The Petitions Committee responded by initiating a Westminster Hall debate, leading to the establishment of a task and finish group by the government minister at the time. In 2018, this group published a report, prompting the government to announce a £20 million fund for brain tumour research, later boosted by an additional £25 million pledge from Cancer Research UK.

Despite more than £40 million in investment promised in 2018, the report shows that this commitment has not translated into tangible progress. Investigations reveal a concerning lack of deployment, with only £15 million reaching researchers over the past 5 years—an alarming disparity between promises made and actions taken.

Of £40 million, only £10 to £15 million has been deployed

The historic underfunding of research into brain tumours becomes glaringly evident considering that brain tumour research has received just 1% of the national spend on cancer research since records began. The figures from the National Institute for Health and Care Research (NIHR), responsible for distributing research funding, also support the report claims and paint a stark picture: of the promised £40 million, only £10 to £15 million has been deployed, depending on the interpretation of brain tumour research figures.

Joss SearchLight – A call to action

The report highlights the shocking state of funding and emphasises the challenges researchers face in accessing government funding. The siloed nature of the system, coupled with limited access to vital resources such as cell line isolation and biobanking, poses significant obstacles for those dedicated to advancing brain tumour research. The finite pool of talented researchers, coupled with discouraging NIHR processes, serves as a disincentive for professionals who could apply their expertise elsewhere in the medical research field.

The area of clinical trials for brain tumour patients further adds to the challenges. A limited number of trials are available, compounded by the unreliability of the national trials database. Pharmaceutical companies, choosing not to pursue the development of brain cancer drugs in the UK, underscore the urgent need for a major shift in prioritising research and development in this critical area.

Perhaps most distressing is the lack of ringfenced funding specifically allocated for research into childhood brain tumours. Survival rates for the most aggressive childhood brain tumours have stagnated for decades, an alarming testament to the critical need for dedicated resources and targeted research initiatives. Without a focused approach to childhood brain tumours, the figures of unchanged survival rates loom large over the youngest and most vulnerable members of our society.

In response to this crisis, there is a pressing need for immediate action on multiple fronts. Firstly, the promised funds must be effectively and efficiently deployed to researchers actively engaged in brain tumour research. Transparent mechanisms and accountability are crucial to ensure that commitments translate into tangible outcomes. Secondly, a holistic approach to research funding is imperative, eliminating silos and streamlining processes to encourage researchers to pursue breakthroughs in the field. The government must actively address the systemic challenges that hinder progress in brain tumour research.

Moreover, the lack of clinical trials and pharmaceutical interest demands a comprehensive strategy to attract and incentivise companies to develop brain cancer drugs in the UK. A reliable and accessible national trials database must be established to facilitate the collaboration of researchers and ensure the efficient utilisation of available resources.

Finally, the pivotal issue of childhood brain tumours requires immediate and unwavering attention. Ringfenced funding, dedicated to researching and improving outcomes for children with brain tumours, is non-negotiable. The survival rates for childhood brain tumours must become a focal point of national efforts, with a commitment to breaking the decades-long stagnation.

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