A NICE committee hearing will be held on 11th April to discuss whether or not to recommend dinutuximab beta antibody therapy for NHS use. An application has been received from pharmaceutical company EUSA Pharma (who hold the European and UK licence).
As we know, dinutuximab beta is an essential treatment that offers hope in the fight against neuroblastoma and it’s unthinkable that any child in the UK would be denied access to this therapy. However, we have reached the point where children needing the drug are no longer guaranteed access to it, despite the therapy being recognised as standard of care by clinicians internationally. Obviously this uncertainty adds even more stress and anxiety for families who are already on an incredibly difficult journey. If NICE fails to approve this potentially life-saving therapy it would mean that no child with high-risk neuroblastoma in the UK could receive it on the NHS, which would be devastating. We believe that we must give children with neuroblastoma the very best chance of survival and as they themselves are too young to speak out, we owe it to them and their families to continue to advocate on their behalf.
This post is an update to the previous one published in December 2017.