Update on our appeal to NICE regarding dinutuximab

Following the announcement that the National Institute of Health and Care Excellence had refused to fund dinutuximab for UK children with neuroblastoma, we lodged an appeal against the decision on Friday July 29th 2016.

We have heard that NICE will consider one of the points we raised although they were “not minded to consider” the other aspects of our appeal. We have until 19th August 2016 to respond to the points that they do not feel they need to reconsider and we are working with lawyers, who have agreed to work with us on a pro bono basis, to put together our submission. On the point of law that they will hear, we have until 26th August 2016 to submit further information and, again, we are working hard with the legal team to prepare this. There will be a full hearing on at least this point on 30th September 2016.

Please be assured that we will do all we can to get this decision overturned, either through the legal process or through a concerted public campaign and lobbying the government.

We will need all the support we can muster and would be grateful for any support you can offer or simply helping us to spread the word. We are currently focussed on the appeal deadlines but are already planning a campaign to run alongside this process to raise awareness of this issue and get public opinion on our side. We will keep you informed as this progresses.

Thank you for your continued support.

Stephen Richards

CEO, Solving Kids’ Cancer UK