Brexit threat to Sam's legacy in EU children's brain tumour research

A leading expert in childhood cancer is warning that life-saving changes to European clinical trials regulations that were inspired by the story of a young brain tumour patient of his, won’t benefit children in the UK after Brexit.

16-year-old Sam White from Newark in Nottinghamshire tragically died of his brain tumour five years ago but his personal campaign with his oncologist Professor David Walker and local MEP Glenis Willmott succeeded only this month, when EU law finally changed to better meet the needs of young cancer patients.

Professor Walker says oncologists who treat children in the UK are very worried about implications of Brexit for the future of cancer research and treatment here. “For rare conditions like brain tumours it is vital that we work together internationally, so for us and these children, Brexit is a disaster,” he says.

While Sam was still well enough, he went with Professor Walker to Brussels to tell his story to the EU commissioners who were rewriting the EU clinical trials legislation at the time. That moving, personal presentation from the teenager and his explanation of what it was like to have a brain tumour prompted the commissioners to seek expert advice from Professor Walker and other leading European paediatric oncologists to help them adapt the law to the needs of children as well as adults.

Professor Walker heads up the University of Nottingham’s Children’s Brain Tumour Research Centre, He said: “Sam was able to capture the legislators’ hearts and help us explain that, in children, doctors are often testing old drugs for new reasons whereas in adults we are mainly testing new drugs for new reasons. The new legislation needed to be flexible enough to deal with both because the original directive was very much skewed towards new drugs for new reasons. Modern cancer treatment is very much about selecting drugs by target rather than by disease. So, it is a very influential piece of legislation.

“It is terribly ironic that all of Sam’s efforts to help doctors gain more access to cross-border clinical trials and more freedom to try new combinations of safe, approved cancer drugs, may not end up benefitting other children like him in the UK as we leave Europe.”

Sam’s dad, Mike White, said: “When Sam was asked about going to Brussels to talk to EU commissioners, he was excited, scared and worried but all these feelings were accompanied by the big smile that Sam was known for. He quickly understood he had an opportunity to be heard that very few young people of his age are given.

“Sam believed that time, money and potential delay in new trials and treatments was being lost with the old EU legislation. What a huge loss and travesty it would be if our children in the UK were to be deprived of potential new treatments due to the UK leaving the EU.”

Dame Glenis Willmott, former East Midlands MEP and EU rapporteur for Clinical Trials Regulation, was able to successfully negotiate the final amendments to the new legislation that has just come into force. She said: “It was meeting Sam that persuaded me to take on the onerous task of updating the clinical trials legislation as the European Parliament’s rapporteur. He was a truly remarkable young man whose legacy will help so many young people across Europe to access safer drugs much more quickly in the future. It would be sad if that legacy would not be open to children in Britain as we prepare to exit Europe.”

Professor Gilles Vassal , from the cancer research institute Gustave Roussy in France, was President of the European Society of Paediatric Oncology (SIOP Europe) during the clinical trials legislation review. He commented: “The strong support of Mrs Willmott to the cause of children and adolescents with cancer and all her efforts to make this EU regulation best address the needs of academic clinical research has been crucial. This new legislation will facilitate and accelerate the development of innovative treatments to cure more children and to cure them better. It is vital that children and adolescents with cancer in the UK continue to have access to best treatments and innovative research”.

Sam White’s family continues to support and fundraise for pioneering new research into brain tumours - the most underfunded of cancers in relation to the terrible impact of this disease. They are determined that Sam’s legacy will live on and make a real and potentially life-saving impact on children worldwide in the future.

A video of Sam’s journey to talk to the EU commissioners is available here.

Glenis Willmott MEP’s address to the EU Parliament in Brussels can be viewed here.

Sam White Legacy website.

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