Isita finishes her fourth cycle of immunotherapy late this evening (Friday) and all being well, will have concluded the entire course by mid-August. Our joy at her improving condition and the hope that we have from the potential benefit she will get from the Dinutuximab Beta treatment has always been tempered by the possibility that other children at earlier stages of treatment than her might not get access to it. This is no longer a concern.
Yesterday, the National Institute for Health and Care Excellence (Nice) unexpectedly recommended that the drug be provided on the NHS. It has worked out a mutually acceptable price with EUSA Pharma, the company that makes it. From a very difficult moment earlier this year when we feared that the drug might be suddenly withdrawn from everyone including Isita, via an interim stage when her treatment and that of a few other children was guaranteed, now all children who need it will get it – a result that was universally desired but far from guaranteed.
The company and the people at NICE have worked hard on this, and the doctors here at GOSH and at Southampton have also been strongly but calmly insistent. The publicity from Channel 4’s wonderful Victoria Macdonald has also helped. She committed to the story right at the beginning and made it an issue that couldn’t be ignored. High-risk neuroblastoma is a hell of a disease. It is really encouraging to feel this communal determination to treat the children who suffer from it, and to see that determination translated into action.