Brain tumour patients and family members who have lost loved ones gathered at the Scottish Brain Tumour Research Centre of Excellence, a game-changing collaboration with Beatson Cancer Charity, in Edinburgh to learn more about the world-class research taking place there and call on the Scottish Government to increase investment in and widen access to clinical trials.
This urgent call comes ahead of the Scottish Parliament Cross Party Group (CPG) on Brain Tumours meeting today (Tuesday 25 November), convened by Brain Tumour Research. Attendees, including Convener Beatrice Wishart MSP and MSP Finlay Carson, will hear about the latest clinical innovations in the field, and about inequitable access to genomic testing.
Whole genome sequencing (WGS) of brain tumour tissue reveals powerful information about the underlying biology driving tumour growth and helps to inform what drugs could be used to target specific cancer-causing pathways. This information unlocks access to clinical trials based on cancer biology rather than location in the body. Without it, the pool of trials that patients can be part of shrinks.
In Scotland, WGS is not routinely offered through the NHS and access is largely limited to research studies. The lack of routine testing means patients are not accessing treatment options based on the biology of their individual tumour when needed. It also means that patients won’t be eligible for more personalised treatments such as immunotherapy that may become available in the coming years.
Among the families calling for more action is Nadia Majid, from Airdrie, who lost her four-year-old son Rayhan to a brain tumour. On 13 December 2017, an MRI scan revealed that little Rayhan had a high-grade medulloblastoma brain tumour.
Two days later, Rayhan underwent a 10-hour operation. Surgeons removed most of the tumour, but not all, as it was touching his brainstem. Despite three further surgeries and six weeks of radiotherapy, Rayhan tragically died just four months after diagnosis, shortly after starting chemotherapy.
“You think that with medicine today, there would be effective treatments and even a cure,” Nadia said. “But shockingly, brain tumours kill more children and adults under the age of 40 than any other cancer.
“Added to this, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002. It shouldn’t be left to charities to fund research.
“We can’t allow Scottish families to be left behind in the search for more effective, kinder treatments and ultimately a cure.”
Brain Tumour Research Patron Theo Burrell will join supporters at the CPG this week. Theo is supporting our active campaigning on the need for greater access to, and patient-led uptake in clinical trials.
Theo Burrell, Brain Tumour Research Patron and glioblastoma patient, said: “Being diagnosed with a brain tumour is devastating enough, without finding out that patients in Scotland are being left behind in the hunt for new treatments due to a lack of routine testing.
“I am working with Brain Tumour Research – the Secretariat of the Brain Tumours Cross Party Group in the Scottish Parliament – to make it clear to the Scottish Government that 100% of brain tumour patients should be offered genome sequencing. The technology is there – let’s use it to stop this injustice.”