Children’s cancer charities have issued a united call for Britain to step up research efforts to discover life-saving cures.
Many drugs and therapies used to fight paediatric cancers are decades old and cause harsh side effects, according to Solving Kids’ Cancer UK (SKC).
It warned that a lack of capacity, investment and “layers of bureaucracy” mean the UK’s infrastructure for clinical studies is “not fit for purpose”.
The charity – with the support of 10 others – is urging the Government to bring together stakeholders including scientists, medics, industry partners and regulatory bodies to transform the research landscape and offer hope to thousands of families affected.
Among those desperately waiting for a treatment breakthrough is four-year-old Olivia Finch, who was diagnosed with high-risk neuroblastoma in January last year.
Her dad Nick said: “We were distraught. Like the air had been sucked out of us. The pain in my chest was so heavy that it felt like someone was standing on me. “We didn’t cry, we screamed. I can still hear it and feel the smallness of the room.”
Olivia responded well to initial treatment but later relapsed and has few options left on the NHS. Nick and Olivia’s mum Kelly are now researching treatments abroad.
He said: “It just feels so unfair that there may be treatment out there that could save Olivia’s life, but we have to first find it, and then pay hundreds of thousands of pounds for it.”
The Daily Express has been campaigning with SKC through our Back Britain to Beat Childhood Cancer Campaign. It asks the Government to invest the £10-15 million needed to launch a transatlantic clinical trial of a promising vaccine for neuroblastoma.
The jab is given when a patient is in remission and aims to cut the risk of the disease returning. Nick and Kelly had fundraised to take Olivia to New York – the only place it is available – before she relapsed.
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They are now looking into a CAR-T therapy trial in Rome that would cost around £270,000 and require the family to move to Italy for at least three months.
Nick added: “Not enough money goes into childhood cancer research and the survival rate is absolutely shocking for high-risk neuroblastoma.
“If a treatment is available abroad, why can’t we get it here in the UK?”
SKC said medical charities were shouldering too much of the burden when it comes to funding and supporting vital research.
Its call for greater investment to improve the UK’s paediatric cancer research landscape is backed by ten groups including Young Lives Vs Cancer, Children with Cancer UK, Neuroblastoma UK and the Grace Kelly Childhood Cancer Trust.
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Gail Jackson, SKC chief executive, said: “The key to improving the lives and futures of children like Olivia is finding more effective treatments for childhood cancers like neuroblastoma, and this can only be achieved by the rapid delivery of robust and efficient clinical trials.
“Despite the dedicated work of healthcare professionals, systemic issues are hindering the progress of clinical research, ultimately at the expense of the children.
“We believe that together with our partners and an engaged government, we can develop meaningful solutions to these issues and create a clinical research environment that better serves children affected by cancer who so desperately need change.”
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