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National brain tumour research funding needs to increase to £35 million a year

Families facing desperate searches for last-chance treatment abroad

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21 August 2023

Brain Tumour Research has shed light on the issues being faced by desperate families who are being forced to find and then fund last-chance brain tumour treatment abroad.

Historic lack of investment in research and other issues such as barriers to getting clinical trials running in the UK have created what we are calling the dark side of health tourism. We're grateful to a number of families who have shared their very personal and painful stories in a powerful report on Sky News in order to raise awareness of their desperate situation.

Sarah Atif’s family raised tens of thousands of pounds to access the clinical trial drug, ONC201, in the Netherlands, but devastatingly treatment was halted after the seven-year-old suffered a bad reaction. They are now searching for new options.

Sarah’s mum, Uroos, shared her daughter’s story in the Sky News studio, alongside our Head of Stakeholder Relations, Hugh Adams, who said it is “unacceptable” that families are being forced to research, access and self-fund treatment abroad having no options in the UK.

Health Minister Neil O'Brien said the Government was “desperate to spend” the £40 million allocated, but we know that since this figure was promised five years ago, less than £11 million has actually gone into research. We will continue to work at the highest levels in Government and with other key stakeholders in order to ensure the promised money is spent where it is most needed.

Our petition calls on the Government to significantly increase investment in brain tumour research and is gaining momentum. Please sign and keep sharing to help us reach our 100,000-signature goal in the hope of prompting a parliamentary debate: www.braintumourresearch.org/petition