SIOP Europe – the European Society for Paediatric Oncology, welcomes the letter by Tischkowitz M et al. in the Lancet[i] regarding the threat of a No Deal Brexit for patients with rare diseases, and highlights the risks imposed on children and adolescents with cancer: a vulnerable group with life-threatening uncommon conditions.
Paediatric cancers are a collection of rare malignancies that affect more than 35,000 children and adolescents and lead to over 6,000 deaths each year in Europe. Thus, paediatric cancers are the leading cause of children’s mortality over the age of one in the region. They also contribute to morbidity in the overall population as most survivors experience late effects, yet many do not have uniform access to organised long-term care.
In rare diseases, including all childhood cancers, expertise is spread across countries. The rarity of paediatric cancers and their high overall burden historically encouraged cross-border collaborations. In the European Union, a common legislative framework enabled particularly close ties. Over the past 50 years, these efforts translated into a marked increase in the cure rate of many paediatric malignancies. SIOP Europe and most recently the European Network on Paediatric Cancer (PaedCan) embody the high level of collaboration in the sector.
European Reference Networks (ERNs) are a major milestone made possible by health policy coordination in the European Union. By providing a framework for cross-border care delivery, the ERN model is crucial in the field of rare and complex diseases, where international collaboration is the only way to achieve meaningful progress.
The ERN PaedCan is fully dedicated to childhood cancers and links reference centres and European Clinical Trial Groups to provide access to the best possible diagnosis, treatment and expertise to young cancer patients across the EU. Centres in each participating country including the UK made significant contributions to and gained from cross-border initiatives within the ERN PaedCan. Excluding a country from the functioning of the ERN PaedCan may disrupt referrals and expertise-sharing and ultimately be detrimental for young patients that the community aims to serve.
Other critical areas for continued cooperation after Brexit from the paediatric cancer perspective include researcher mobility, access to medicines, and the conduct of multi-country clinical trials.
Paediatric cancers remain a major challenge in Europe with ample room for further life-saving progress. There is great potential as the community is well organised, has defined a common strategy to further improve survival and quality of life, and established international implementation platforms. However, tangible change can only be achieved if all European stakeholders continue to work closely together without artificial barriers to established collaborations and can jointly explore new opportunities. Each country has a contribution to make and each patient has the right to the best possible treatment and care, chance at survival, and well-being.
SIOPE is proud to have a President from the United Kingdom and more than 200 SIOPE UK members greatly contribute to the implementation of the SIOPE Strategic Plan. Whereas the European paedicatic cancer community continues working together with the UK as an indispensable part of cross-border knowledge-sharing and scientific cooperation, we urge that Brexit policies reduce rather than increase inequalities in access to care and research and amplifies rather than stifles the gains already made.
The lack of a forward-looking political agreement on Brexit puts at risk the gains achieved through European cross-border healthcare coordination on rare diseases and may seriously hinder further life-saving progress.
It is crucial that Brexit does not put barriers to the long-standing collaboration in the pan-European paediatric cancer sector for the sake of the health and welfare of the thousands of children and adolescents with cancer, both in the UK and in other European countries
 (Tischowitz, M et al. A no-deal Brexit will be detrimental to people with rare diseases. Lancet; 12 Dev 2020; DOI: 10.1016/S0140-6736(20)32631-3 (https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32631-3/fulltext)