As you may already be aware the NICE (National Institute for Health and Care Excellence) recently published interim guidance that dinutuximab (Unituxin, ch14.18/SP2/0) in combination with GM-CSF and IL-2 is not recommended for use on the NHS in England and Wales as it does not represent a cost-effective use of resources. Nick Bird (dad to Adam) attended the appraisal meeting as a patient expert on behalf of Solving Kids’ Cancer, and provided an update to all parents (via email as well as a factsheet in the conference booklet) on what the current situation is, and what the next steps are.
This guidance is not yet final. NICE have published an Appraisal Consultation Document (ACD), and invited comments from members of the public by a strict deadline of 25th November 2015. A response was returned from Nick as the nominated Patient Expert, a second wider response on behalf of the charity, as well as any individual parent responses which you have submitted. The committee will meet again in the New Year to review the evidence, together with any responses to the consultation document, and we will keep you informed of any developments.