Mum of Leeds boy Toby Nye welcomes decision to make cancer treatment he has undergone available on NHS

Toby Nye
Toby Nye

The mother of a young Leeds boy who said she was left with no choice but to fundraise for his cancer treatment has spoken of her joy that it will now be available on the NHS.

Stacey Worsley, whose son Toby Nye was diagnosed with neuroblastoma on his fourth birthday, said it was "amazing" other families would not have to raise thousands of pounds to pay for antibody therapy, after the drug 'dinutuximab beta' was recommended by the National Institute for Health and Care Excellence (NICE) under final draft guidance published today.

Leeds United fan Toby, now five, has just finished the treatment, which has cleared his bone marrow of cancer, after readers and the club supported his family's campaign to raise £200,000 to pay for it.

Miss Worsley, of Osmondthorpe, said: "I think it is absolutely amazing that other children will now be able to get it and they won't have to do what we had to.

"Rather than spending all our time caring for our child, we had to fundraise, and just a couple of months down the line this is now available. It's great news for families."

Nice has recommended the drug be used for the treatment of high-risk neuroblastoma and said the "potential survival gain" offered by its use was "substantial".

Meindert Boysen, director for the NICE Centre for Health Technology Evaluation, said: “It is an important treatment option for children and young-people with high-risk neuroblastoma in particular, and has shown the potential to increase their survival.

“We are grateful to the company for responding to our evaluation by setting a price which is cost-effective to the NHS. We welcome this new and effective treatment option.”

Gemma Lowery, mum of Sunderland fan Bradley Lowery who died last July aged six, after being diagnosed with neuroblastoma at 18 months old, is among those to welcome the news.

Mrs Lowery said: "This is a huge step forward in the world of neuroblastoma and takes away so much stress for the families whose children are fighting against it.

"Making this drug available on the NHS for children with high-risk neuroblastoma will be a huge relief for parents and will give them hope."

EUSA Pharma said it had shown to keep 65 per cent of children alive beyond five years.

Tony Heddon, Chair of Neuroblastoma UK said: “Today’s recommendation is a bold and forward-thinking decision from NICE and we applaud them, EUSA Pharma and all those across the community who have worked together to make this medicine available. This decision offers the hope that these children with high-risk neuroblastoma, may now have a better future in front of them.”

Dr Juliet Gray, Associate Professor in Paediatric Oncology at the Cancer Immunology Centre, University of Southampton, added: “By harnessing the body’s own immune system, dinutuximab beta has shown it can target and attack this cancer very effectively in some patients. For some children this could mean extra weeks or months with their families, for others it may even lead to them becoming cancer-free for a long period of time.”

Nice previously said dinutuximab beta would be too expensive to recommend for use, with a course of treatment for a three year old costing on average £152,200.

However the body said an agreement had been reached with EUSA Pharma to allow the drug to be made available on the NHS at a confidential discounted price.

It will be given to patients aged 12 months and over, whose disease has at least partially responded to first stage chemotherapy, followed by myeloablative therapy and stem cell transplant. They will only be eligible if they have not already received anti-GD2 immunotherapy.

The decision comes a week after The Yorkshire Post reported on the plight of desperate families turning to crowdfunding to pay for treatment not available on the NHS.