28 July 2016

The decision to deny potentially life-saving treatment from children with a rare form of cancer could condemn many children to outdated treatment options and a reduced chance of survival.

As a charity representing families affected by neuroblastoma, the announcement that NICE has decided to deny dinutuximab, the only treatment approved specifically for neuroblastoma, to children with this aggressive childhood cancer has profound implications. This is not an issue of seeking to buy extra time for children with neuroblastoma. Whilst dinutuximab is not a cure for all, it has been shown to significantly increase the chance of survival and many children are alive today and living a full life because of this medication. The decision to refuse this drug for children in the UK is at odds with the many countries in Europe and North America where this therapy is the standard treatment for neuroblastoma and risks pushing back advances in treatment to 2009 in the UK.

Fewer than 100 children are diagnosed in the UK each year, of which only a third would benefit from this antibody therapy. The cost to the NHS of giving children a greater chance of survival and a normal life is therefore very small, but British children diagnosed with this cancer in future would only be able to access specialised treatment by taking part in a clinical trial. This is wholly unethical when an effective drug is approved.  The only other option open to parents will be to raise in excess of £500,000 to take their child abroad for treatment.

The term ‘a matter of life and death’ is overused, but the denial of this therapy for NHS patients will have very significant implications for children diagnosed with this disease. We are committed to working closely with families, health bodies, clinicians and other childhood cancer charities to address the implications of this decision and will continue to fight for access to the best possible care for children affected by neuroblastoma in the UK.

How you can help

We have lodged an appeal against this decision, which is available to view here. Please help us by writing to your MP and urging your friends and supporters to do the same.  It only takes a few minutes and could give a child the chance to survive and live a full life. You can download a template letter and instructions here. Please let us know that you have supported our campaign here to help us track the campaign’s reach and response.

One of the options we are seriously considering is starting an online petition, and we will keep you updated on our progress.

On behalf of Solving Kids’ Cancer and children with neuroblastoma and their families, thank you so much.

Stephen Richards

CEO, Solving Kids’ Cancer (Europe)

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