Children and young people are being denied the latest cancer treatments by outdated European regulations.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 The regulation is badly out of date.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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