Children and young people are being denied the latest cancer treatments by outdated European regulations. Pharmaceutical companies are able to use a loophole in EU legislation to avoid trialling cancer drugs in children – despite evidence that these treatments could work. An analysis of European Medicines Agency data by the Institute of Cancer Research shows that since 2012, the loophole has been enacted to prevent 33 new cancer drugs from being evaluated in children. There is evidence that at least some of these treatments could be effective against children’s cancers.
Children’s cancers are rare, and there is little financial incentive for companies to develop drugs for them. The current EU paediatric regulation could do much more to ensure that children benefit from the dramatic advances in treatment we are seeing for adult cancers. The regulation is badly out of date. It allows pharmaceutical companies to opt out of running paediatric trials simply because the adult cancer a drug targets does not occur in children. But these days, scientists understand that it is a cancer’s genetic causes – rather than where it happens to grow in the body – which are the most important factor in determining which treatments work.
Children are missing out on a range of treatments that could effectively target the genetic changes within their cancers. Children and young people deserve the same access to new drugs as adults. The European commission is carrying out a consultation on the paediatric regulation and we believe this is our chance to change the rules to ensure potentially effective cancer drugs have to be trialled in children. If this loophole is not closed now, children could miss out on new cancer treatments for years to come.
Professor Paul Workman
Chief executive, Institute of Cancer Research
Cally Palmer
Chief executive, Royal Marsden
Siobhan Dunn
Chief executive, Teenage Cancer Trust
Cliff O’Gorman
Chief executive, Children with Cancer UK
Professor Bobbie Farsides
Chair, Nuffield council on bioethics working group on Children in clinical research: ethical issues
Amanda Walker and Ray Mifsud
Founders, Abbie’s Army
David and Sara Wakeling
Founders, Alice’s Arc
Lynn and Lynn Lucas
Founders, Chris Lucas Trust
Karen and Kevin Capel
Founders, Christopher’s Smile
Diego Megia
Founder and president, CRIS Contra el Cancer
Lola Manterola
Founder and president, CRIS Cancer Foundation
Martin and Sian Waite
Founders, Elin Rose Appeal
Mark Proudlove
Founder, Faye’s Wish
Dr Jennifer Kelly
General practitioner and founder, Grace Kelly Ladybird Trust
Samantha Wearne
Founder, Jack Mylam Foundation
Andrew and Jo Williams
Founders, Lucas’ Legacy
Richard and Nikki Bowdidge
Founders, Tom Bowdidge Foundation
Clinton and Adele Prince
Founders, Tom Prince Cancer Trust
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Close cancer loophole now to save children’s lives | Letters
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