Eden with the letter being sent to the Health Secretary (Image: )
These smiling faces show why the UK must help fund a trial of a promising cancer vaccine that could end families’ heartache.
The parents of 15 children struck by high-risk neuro-blastoma have written to Health Secretary Steve Barclay urging him to meet them to discuss the urgent need for better treatments.
The letter, organised by charity Solving Kids’ Cancer UK, says: “No parent should ever feel they have run out of options to try to save their child’s life.”
Around 50 children a year are diagnosed with this rare and aggressive disease and have a 50/50 chance of survival. Those whose treatment is successful live with the threat of their disease returning. But an experimental vaccine aims to cut this relapse risk.
Early data suggests it can generate a robust immune response against two proteins found on the surface of neuroblastoma cells. But it is only available through a study at a New York clinic, and British families are fundraising hundreds of thousands of pounds to access it.
Children struck by high-risk neuro- blastoma (Image: )
Our Back Britain to Beat Childhood Cancer crusade is calling on the Government to invest the £10-15million needed for the European arm of a transatlantic study, which would allow patients to access the vaccine here and prove whether it cuts relapse risk.
Among those who signed the letter were Lee Smith and Jen Ramsden, parents to Eden in West Yorkshire.
The eight-year-old was diagnosed in April 2021 and is now taking part in the New York trial. She will travel to the US later this month for her sixth injection out of 10.
Lee said: “The vaccine is safe and doesn’t cause her too much pain. We just thought if it gives her one, two, five, 10 per cent [better chance of survival] then it has to be worth doing.
“We have got to give her every chance we can. We also wanted to be a part of building the data up for other children. If it can help Eden and future families, then why not do it?”
Eden, eight, with her dad Lee Smith (Image: )
A fundraising campaign for Eden took off and raised more than half a million pounds. But the travelling has been tough.
Lee said: “The first trip was 30 nights over there, which sounds like everybody’s dream – a month in New York. But it was a long time to be away from family.”
The letter’s signatories include parents of children undergoing treatment for neuroblastoma, those who have travelled to access the vaccine, and children who tragically died after their cancer relapsed.
Sally Gilding’s son Luke was diagnosed in May 2022 after a tumour was discovered following a football accident. Luke, 12, had surgery to remove it but scans showed it had spread to his skeleton and he is now being closely monitored.
Sally said that alongside the immediate stress of treatment, cancer brought financial challenges, guilt over lost family time for Luke’s siblings, and the “constant daily fear of not being able to do enough to help your child survive”.
A letter will be sent to Steve Barclay (Image: Getty)
She added: “Unless you are a parent of a child with cancer it’s impossible to understand just how difficult it is. There are doctors and scientists ready and willing to help bring the vaccine trial to the UK, and we need the Government to help us.”
Jess Virdee signed the letter after her son Reuben, nine, completed the vaccine trial in 2019.
She said: “Reuben was so fortunate to be able to access treatment but it’s a choice that not everyone has. This cannot be right. For all families supporting a child diagnosed with neuroblastoma, choices provide hope.”
Naomi Bentham, mum to 12-year-old Anya, who is in remission, said: “Our children deserve the chance to grow up and live a normal life free from pain, and this can only happen with more research.”
Cancer is the leading cause of death in children and young people. The letter argues that families should not face the additional burden of raising “extraordinary sums of money to access experimental therapies abroad”.
It adds: “The UK Government has an opportunity to take a global lead through investing and helping to facilitate intercontinental clinical trials for children’s cancers like neuroblastoma. Doing so would alleviate the emotional and financial burden experienced by families who are already enduring so much hardship.”
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If the vaccine is proven to work, it could become part of standard treatment. And if it is not, families could be spared the stress of travelling and British experts would gain knowledge about how to run transatlantic studies – creating a blueprint for other rare childhood cancers.
The letter concludes: “We are keen to meet with you, together with Solving Kids’ Cancer UK and Neuroblastoma UK, so you can hear directly from those of us whose lives have been turned upside down by a diagnosis. We hope to hear from you on how this can be arranged.”
A Department of Health and Social Care spokesman said the National Institute for Health and Care Research was supporting a trial that will look at another targeted drug treatment for neuroblastoma, and said it had delivered a £10million state-of-the-art facility to develop cutting-edge technology.
They added: “We’re making huge strides in the fight against cancer – the NHS has seen and treated record numbers of cancer patients over the last two years, with cancer being diagnosed at an earlier stage more often and survival rates improving across almost all types of cancer.
“This week we also signed a ground-breaking deal with BioNtech who will start developing individualised cancer vaccines in Britain.”
Comment by Gail jackson Solving Kids’ Cancer UK
When a family hears the words, “Your child has cancer”, their world is turned upside down. They are thrown into what is likely to be the hardest experience of their lives. Parents will do all that they can to save the life of their child.
In the case of neuroblastoma, relapse becomes the worst fear for families after treatment ends, as the prognosis at this point becomes extremely poor, with only a one in 10 chance of survival.
The very real fear of a relapse often compels families to search for possible relapse prevention options being studied.
But none of these options are currently available in the UK. One of the most popular options is the Bivalent vaccine, currently being studied at Memorial Sloan Kettering Hospital in New York.
However, to access this, families are faced with having to raise hundreds of thousands of pounds, putting enormous efforts into fundraising, all whilst trying to get their child through the gruelling treatment regimen and upheaval that a neuroblastoma diagnosis brings.
We are calling on the UK Government to fund the European arm of an international clinical trial of the Bivalent vaccine, which
would mean opening a trial site here in the UK.
By doing so, the UK has the opportunity to address the needs of this underserved community and alleviate the emotional and financial burden they experience, whilst already enduring the hardship of childhood cancer.
No parent should ever feel they have run out of options to try to save their child’s life.
Funding this trial would be a significant step towards helping to gather the evidence which might provide families with vital further options.
Despite cancer being the leading cause of death in children, there is an evident gap in investment and prioritisation of childhood cancer research amongst policymakers.
Leading the Bivalent vaccine trial on behalf of Europe could be the blueprint for many future initiatives that would address this societal problem that too often brings devastation to families and communities across the country.
