Stephen Richards, Chief Executive of Solving Kids’ Cancer, said:
“We are absolutely delighted that the right decision has been made to benefit the lives of children with neuroblastoma. Parents, charities and clinicians have together helped bring about this positive result.
Families now know their very sick child will be able to have the best treatment that gives the greatest chance of long-term survival here in the UK.
We’ve been fighting within a complex system for the last three years, with the expertise of parents who have devastatingly lost their own children and doctors dedicated to improving research and care. Thank you to everyone who has helped give our sick and vulnerable children a voice.
We’d like to acknowledge the work of those involved – including NHS England, NICE and EUSA Pharma – in coming together to agree this positive outcome. And we hope there is an opportunity to reflect on the way future treatments for seriously ill and vulnerable children are appraised.”
Solving Kids’ Cancer has been working alongside a range of other charities to push for this outcome of NICE recommending life-saving drug for NHS use. Dr Juliet Gray, a member of SKC’s Scientific Advisory previously met with the then Health Secretary Jeremy Hunt MP to raise the concerns of the neuroblastoma community. And thousands of parents, supporters and members of the public signed a petition to protest.