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All-Party Parliamentary Group on Brain Tumours launches landmark Inquiry report

Yesterday the APPGBT launched their report ‘Pathway to a Cure – Breaking Down the Barriers’ looking at how the government can best support research into brain tumours.

Derek Thomas MP, chair of the All-Party Parliamentary Group on Brain Tumours (APPGBT)
Derek Thomas MP, chair of the All-Party Parliamentary Group on Brain Tumours (APPGBT)

We as a community are all too familiar with how disappointing funding for research into brain tumour has been over the years. Historically, research has been underfunded and it is part of the reason why new treatments haven’t emerged in decades.

However, that all seemed to change in 2018 the government announced they would be committing £40m of research spending for research into brain tumours – one of the great legacies of Dame Tessa Jowell. The money was made available from the National Institute for Health Research (NIHR) and focus seemed to be coming our way.

Five years later, just £15m of the £40m total has been awarded to researchers since June 2018, with £6m of that not easily identifiable as relevant to brain tumours. Concerned about this, the All-Party Parliamentary Group on Brain Tumours (APPGBT) launched its Pathway to a Cure inquiry in 2021 holding six different oral evidence sessions and receiving survey responses from 38 leading brain tumour scientists and clinicians across the UK. The aim of the inquiry was to find out what the barriers are to spending the £40m and why it hasn’t been spent. We were lucky enough to have our very own Chief Scientific Officer, David Jenkinson, be invited onto the panel for the Inquiry.

Yesterday they launched their report which details their findings. They also make a set of recommendations that, if enacted, would make funding for research into brain tumours a whole lot easier.

What did the report find?

NIHR actually told the Inquiry that they are ready to fund brain tumour projects but that they receive too few applications which ultimately results in too few reaching the quality threshold for them to fund. However, the inquiry found that this was not the whole story.

Scientists and clinicians told the Inquiry that NIHR funding calls were focused on later parts of research which normally focus on trying to develop new medicines to target brain tumours, rather than trying to learn about how brain tumours develop and grow. But because historically so little funding has gone into research in the disease, we actually still need to have a really strong focus on the ways brain tumours develop and grow before we get to the stage of being able to develop new medicines and treatments. That’s why the way NIHR funding calls focus on that later part of the research journey are actually a barrier to funding good research into brain tumours.

One of the other larger points that came out of the inquiry was around clinical trials. Across the country there is quite differing access to trials and this means there is really patchy access for people to take part in those trials. For researchers as well, it is difficult because there is a huge dearth of capacity within NHS resources and staff time to run trials.

The pharmaceutical industry also contributed to the Inquiry, ensuring a really well-rounded input of evidence, and they talked about the processes of delivering new drugs was not easy. There were issues raised about how inflexible National Institute for Health and Care Excellence (the people who decide which drugs and treatments will be available on the NHS), how complex the regulatory framework is and how much it costs to support and perform trials in the NHS.

What are the next steps?

The report was launched at an event in Parliament last night where a number of MPs, Lords and policy makers were in attendance. Alongside the launch, the Tessa Jowell Brain Cancer Mission published their report highlighting the variations in care across NHS brain cancer services in the UK. Together, these two reports call for important changes to brain tumour research funding and care. And by launching them at Westminster, the reports’ recommendations will be seen and read by the right people.

We will continue to support the APPG for Brain Tumours, the report and Brain Tumour Research in their campaign to make some of these recommendations a reality.