Forty five thousand families stunned and scared. Forty five thousand agonising journeys through appointments and scans and results.
But it’s also 45,000 opportunities. In an ideal world, every one of those patients could have helped drive the quest for more effective treatments, through drug trials and participation in research.
If a quarter or even a tenth had done so, who knows what the landscape would look like today for newly diagnosed brain tumour patients?
In fact, during those five years, fewer than 500 adult brain tumour patients in the UK – just over one per cent of the total number diagnosed – have taken part in research to test a new type of brain tumour treatment or procedure.
The proportion of newly diagnosed brain tumour patients involved in this kind of study has not risen above 3.5 per cent in any single year since 2006/2007.
That compares with 7.5 per cent across all adult cancers in 2013/14. In some fields, the proportion is much higher – among those affected by blood cancers, for example, one patient in four takes part in an interventional study or clinical drugs trial.
Why is it so rare for brain tumour patients to join clinical trials?
There is certainly no widespread reluctance among patients themselves. We know from the people we support that many – particularly those with a terminal diagnosis – would seize the opportunity without hesitation.
And there is public support for greater access to experimental treatments. A survey for The Brain Tumour Charity earlier this year found that eight out of ten people agreed or strongly agreed that “everybody diagnosed with cancer should be offered the opportunity to take part in a clinical trial.”
Of course, research is expensive. Thanks to our fundraisers and supporters, we are investing an unprecedented amount into projects around the UK which we hope will bring more brain tumour patients into clinical trials.
We are making it easier for patients to find out about the clinical trials that are taking place already, with a database on our website of international research projects seeking participants.
But it’s not just about money or the total number of trials available. If we are truly to make ‘every patient a research patient’ – one of our key goals here at The Brain Tumour Charity – we need researchers and policymakers to think about the way trials are designed.
Could they – should they – come up with ways to involve wider groups of brain tumour patients, rather than focusing each time on a small number who meet a very narrow set of criteria?
Could they – should they – have greater freedom in some cases (with patients’ permission) to try experimental treatments that have not been through the usual trial procedures – as proposed by Lord Saatchi in his Medical Innovation Bill?
It’s a debate we need to have with researchers and patients, as we continue to drive forward the search for more effective brain tumour treatments.
Access our worldwide clinical trials database.
By Polly Newton