“Children with Cancer Cannot Wait – Time is Running”
Statement by Carmelo Rizzari, SIOPE President, on Children’s Rights Day
Press release on the occasion of Children’s Rights Day
Brussels, 20 November 2024
Today we celebrate International Children's Rights Day. This date was chosen to mark the adoption of the Convention on the Rights of the Child by the United Nations on 20 November 1989. Supporting children’s rights, regardless of where they live, holds special significance for SIOP Europe. The SIOPE Strategic Plan, updated in 2021, places “Equal Access” as the first of its seven objectives because, despite advances in treatment and care, significant disparities in access to high quality care and research persist across Europe.
Addressing these inequalities and promoting equal access to standard care, expertise and clinical research for diagnosis, treatment, and follow-up is a fundamental strategic aim for SIOP Europe. Therefore, on the occasion of Children's Rights Day, SIOP Europe and CCI Europe held a special policy event on 19 November 2024 at the European Parliament, hosted by MEP Loucas Fourlas (EPP, Cyprus), whom we thank heartily for being a champion of the cause of children with cancer. He declared:
“This day holds great meaning to me. Personally, as a Member of the European Parliament, health issues and particularly those concerning children are on top of my agenda”.
A first-of-its-kind policy event to facilitate high-level stakeholder discussion on advancing paediatric oncology on Children’s Rights Day
The event brought together key stakeholders to address critical issues in paediatric oncology during a 2-hour discussion with high-level speakers. The moderated panel discussion resulted in three important takeaways that we must carry forward every day, beyond Children’s Rights Day:
- Every child must have a right to high-quality healthcare, regardless of where they live. The care framework for children with cancer in Europe has not yet reached the same level of advancement and prioritisation as that provided for adult cancer patients. When referring to the findings of the OCEAN Project on the organisation of care, research, and the availability of trials in Europe, Prof. Gilles Vassal (SIOPE Board Member, Gustave Roussy) stated:
“There is a need for specific measures to strengthen the current structure. Clearly, there is a major discrepancy on the beautiful map of Europe.”
- Cross-border care and research collaboration in paediatric oncology are essential to support the right to high-quality care. Referring to the Cross-Border Healthcare Directive, Prof. Ruth Ladenstein (ERN PaedCan Coordinator) noted:
“It is a beautiful start, but it has limitations. Health is a Member State competency, so working cross-border is not as easy as it sounds.”
The panel emphasized on the achievements of the on-going ERN PaedCan project, which has developed more than 25 European standards of care guidelines accessible to all Member States. These guidelines aim to expand treatments in resource-limited countries. In addition to standards, the community calls for opening innovation and access to trials beyond borders, as stated by Delphine Heenen (CCI Europe Committee Member):
“We should make it possible to allow for the use of S2 forms [cross border care authorisation] ...for travel to clinical trials and access to innovative treatments especially for rare diseases”
- Momentum for action must continue beyond Children’s Rights Day. This first-of-its-kind event inspired a momentum to revisit Europe’s intentions to better address the needs of paediatric cancer patients. Participants and speakers applauded the work thus-far of the Beating Cancer Plan, Cancer Mission, and the ERNs while MEP Vlad Voiculescu (RE, RO) shared:
“There is going to be an intergroup on cancer and rare diseases. We are also cooperating with SIOPE, who will have the leading role for everything that is related to kids with cancer.”
The event successfully placed childhood cancer at the heart of the European agenda, emphasizing that the right to high-quality care and treatment is a right—not a privilege. EU decision-makers, healthcare professionals, patient advocates, and readers like you must continue to work together to ensure every child has access to the care they need.
ABOUT CCI Europe and SIOP Europe
Childhood Cancer International - Europe (CCI-E, or CCI Europe) represents childhood cancer parent and survivor groups as well as other childhood cancer organisations in Europe: 64 organisations in 35 European countries are members of CCI-E. CCI Europe works together with all relevant stakeholders for the same goal: help children and adolescents with cancer to be cured, with no - or as few as possible - long term health problems/late effects (www.ccieurope.eu).
The European Society for Paediatric Oncology (SIOPE, or SIOP Europe) is the single united European organisation representing all professionals working in the field of childhood cancers. With more than 2,500 members across 35 countries, SIOP Europe is leading the way to ensure the best possible care and outcomes for all children and adolescents with cancer in Europe (www.siope.eu).