Solving Kids’ Cancer UK launches External Affairs Strategy

With support from partners across the sector, we’re proud to launch our first External Affairs strategy, aiming to deliver a step change in clinical research for children’s cancers.  

External affairs strategy one-page plan

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In 2019, Solving Kids’ Cancer UK, together with Neuroblastoma UK, agreed to fund the UK arm of the SIOPEN High-risk Neuroblastoma 2 trial (SIOPEN HRNBL2) - a Europe-wide clinical trial investigating new treatment for high-risk neuroblastoma – a rare and aggressive childhood cancer that affects around 100 children in the UK every year. 

With survival rates for high-risk neuroblastoma being as low as 40%, clinical trials are crucial as they offer promise to find therapies that can better treat this devastating disease, and hope to families who desperately need it against these worrying statistics. Our decision to fund the SIOPEN HRNBL2 trial to open in the UK was to ensure that children here in the UK could access, at the same as the rest of Europe, the most innovative and potentially superior treatments.  

However severe delays in the mobilisation of this trial have meant that the first trial site was not open until over 12 months after the funding was in place. As of now, almost 4 years after the initial funding agreement, only half of sites have opened meaning that some children are missing out on the opportunity to take part in this potentially life-saving trial. 

We have worked closely with the Cancer Research Clinical Trials Unit at the University of Birmingham to identify and understand these barriers. Capacity, repetition of process and approval delays are just some of the many challenges that point to a clinical research infrastructure that is not fit-for-purpose. Sadly, this is not unique to a single trial for neuroblastoma, but rather spans across all clinical trials for children’s cancers. Despite the dedicated work of healthcare professionals, systemic issues are hindering the progress of clinical research, ultimately at the expense of the children. 

Solving Kids’ Cancer UK has supported over 40 families to access clinical trials overseas that have not been available here in the UK. We know this must change, and that every child in the UK who has the need to access a novel therapy should be able to do so here, through clinical trials within the NHS. 

It is this that has driven the development of our first External Affairs Strategy, which aims to deliver a step change in clinical research for children’s cancers. In our position as funders and drivers of neuroblastoma clinical research, we have become acutely aware that there are challenges in the neuroblastoma and paediatric cancer research environment, meaning the UK is at risk of falling behind, and patients are paying the price. 

We have identified four key challenge areas that are preventing improvements to the care and outcomes for children with cancer, that must be addressed by the government with support from experts in this sector. 

Key challenges

  • Paediatric oncology is not prioritised by decision and policymakers. 
  • There is a lack of resource for research & development into novel childhood cancer treatments, leaving medical research charities to make up the shortfall in funding.
  • There is limited capacity for the NHS to deliver clinical trials at the pace and efficiency that is needed. 
  • Access to novel therapies for children with cancer is limited in the UK, forcing families into impossible decisions around accessing treatments overseas. 

We are now building a strategic alliance with others working in the childhood cancer landscape, including charity partners, leading clinicians and researchers and industry representatives, to engage the government in this important issue. We recognise that this is a considerable task to take on, and one that we cannot achieve alone but instead needs collaboration and expertise from across the sector. 

We believe that together we can develop practical and meaningful solutions to the issues identified above and create a clinical research environment that better serves children affected by cancer who so desperately need change.

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