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09
Mar
2017

Our joint letter calling for reform of European regulations on clinical trials in children

This letter was written in support of calls from The Institute of Cancer Research, London and its partner signatories to reform European regulations around trials of cancer treatments in children.

It was published in The Guardian on 14 March 2017.


Children and young people are being denied the latest cancer treatments by outdated European regulations.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.

An analysis of European Medicines Agency data by The Institute of Cancer Research, London, shows that since 2012, the loophole has prevented 33 new cancer drugs from being evaluated in children despite evidence that at least some of these treatments could work.

Children's cancers are rare, and there is little financial incentive for companies to develop drugs for them. The current regulation could do much more to ensure children benefit from the dramatic advances seen in adult cancer treatment.

The regulation is badly out of date.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 scientists now understand that it is a cancer’s genetic causes – rather than where it happens to grow – which are most important in determining which treatments will work.

Children are missing out on a range of treatments that could effectively target genetic changes within their cancers. Children and young people deserve the same access to new cancer drugs as adults. We believe the European Commission’s on-going consultation 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.

Signatories

Professor Paul Workman, Chief Executive, The Institute of Cancer Research, London

Cally Palmer, Chief Executive, The Royal Marsden NHS Foundation Trust

Siobhan Dunn, Chief Executive, Teenage Cancer Trust

Cliff O’Gorman, Chief Executive, Children with Cancer UK

Professor Bobbie Farsides, Chair of the Nuffield Council on Bioethics Working Group on Children in clinical research: ethical issues

Alastair Kent, Director, Genetic Alliance UK

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, The Grace Kelly Ladybird Trust

Samantha Wearne, Founder, The Jack Mylam Foundation

Andrew and Jo Williams, Founders, Lucas' Legacy

Richard and Nikki Bowdidge, Founders, The Tom Bowdidge Foundation

Clinton and Adele Prince, Founders, Tom Prince Cancer Trust

Christopher Copland, Unite2Cure

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Paul Workman childhood cancer
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