Great initiatives require a flawless implementation: coordination is key and an EU Childhood Cancer Advisory Board is the answer.
The European Childhood Cancer Community’s communication on the European Parliament’s Special Committee on Beating Cancer (BECA) Resolution and the Statement from the Trio Presidency of the Council of the European Union.
THE BECA RESOLUTION
In February 2022, SIOP Europe and CCI Europe enthusiastically welcomed the European Parliament vote in favour of the Resolution ‘Strengthening Europe in the fight against cancer – towards a comprehensive and coordinated strategy’ (2020/2267(INI)). Stemming from the work of the European Parliament’s Special Committee on Beating Cancer (BECA) and spearheaded by Member of the European Parliament (MEP) Véronique Trillet-Lenoir, the Resolution contains a thorough set of policy recommendations for improving cancer outcomes across Europe. Of great importance for the paediatric cancer community, it includes Chapter V: ‘Challenges in cancer among children, adolescents and young adults’. The Resolution is a distinct milestone in EU cancer policy and complements and expands on the content of the European Commission’s Beating Cancer Plan launched in February 2021.
THE STATEMENT FROM THE TRIO PRESIDENCY OF THE COUNCIL OF THE EU
Also in February, the European paediatric cancer community was enthusiastic to see childhood cancer highlighted in the Statement from the Trio Presidency of the Council of the EU in the context of the European Meetings of the French National Cancer Institute. This ambitious declaration acknowledges the persistent burden of childhood cancer in Europe and affirms the need to “gain pace in the combat against cancers in children and young people” by improving the policy environment for medicinal product development and stepping up cross-border clinical trials and health data sharing.
A STRONG CALL FOR COORDINATION
Important political commitments were made and turning them into life-saving gains for children and adolescents with cancer requires their rapid, smart and coordinated implementation across Europe.
We see a risk that the several initiatives included in these commitments, further described below, could fall short of their full potential for a mere lack of coordination, which could lead to conceptual gaps or, worse, contradictions between initiatives.
For this reason, SIOP Europe and CCI Europe advocate for keeping the momentum with emphasis on coordinated action across all relevant EU programmes and the institution of an inclusive EU Childhood Cancer Advisory Board: a multi-stakeholder group that would support cross-talk among EU initiatives of relevance to childhood cancer, foster a comprehensive and inclusive approach, avoid the risk of fragmentation and accelerate the advancement towards the overall objective to cure more children, cure them better, and reduce inequalities.
BECA COMMITTEE RESOLUTION: CANCER IN CHILDREN, ADOLESCENTS, AND YOUNG ADULTS
Childhood cancer is present in the BECA Resolution since its Preamble through references to the WHO Global Initiative for Childhood Cancer, the EU Strategy on the Rights of the Child, and the Joint Action on Rare Cancers which included a Childhood Cancer Work Package led by SIOP Europe.
The dedicated Chapter V: ‘Challenges in cancer among children, adolescents and young adults’ contains 13 recommendations to improve the policy environment across the paediatric cancer research and care continuum, with specific consideration for the teenager and young adult population. Childhood cancers are also addressed in other cross-cutting sections of the Resolution.
Among the highlights for childhood cancer, the BECA Resolution calls for:
- Ring-fencing European Union funding for paediatric cancer programmes, with a focus on academic-driven research cooperation
- Improving access to the best possible research, diagnosis, treatment, and care, including in a cross-border setting with reference to the European Reference Network on Paediatric Cancer (ERN PaedCan)
- Revising the Paediatric and Orphan Regulations to address the unmet needs in childhood cancer
- Instituting an advisory body to advise on coordinating childhood cancer actions across relevant EU programmes
- Undertaking measures to address the mental health needs of paediatric cancer patients and survivors
- Developing and implementing programmes specifically designed for childhood cancer survivors, including the transition from paediatric to adult care, long-term follow-up, and the Right to Be Forgotten.
EU CHILDHOOD CANCER ADVISORY BOARD IN THE BECA RESOLUTION AND SUPPORT BY THE TRIO PRESIDENCY OF THE COUNCIL OF THE EU
The vision of a Childhood Cancer Advisory Board is reflected in the BECA Resolution’s Paragraph 137: “Calls for the creation of an EU-level advisory group of stakeholders dedicated to childhood and AYA cancers, which would support the goal-driven and coherent implementation of relevant actions across the [Europe’s Beating Cancer] Plan, Horizon Europe, the Pharmaceutical Strategy for Europe and EU4Health Programme.” Similarly, the List of Actions that accompany the Statement of the Trio Presidency of the Council of the EU include the establishment of “new ways to coordinate and follow the actions specifically related to paediatric cancers to support the goal-driven, successful and coherent implementation of actions and projects concerning children and young people with cancer”.
SIOP Europe and CCI Europe strongly call for the set-up of an EU Childhood Cancer Advisory Board, which would be instrumental in supporting an organised action and fully realising the very ambitious EU agenda for children, adolescents, and young adults with cancer across Europe.