International Childhood Cancer Day, 15th of February 2014
Since 2011 SIOP Europe organises yearly the International Childhood Cancer Day through a high-level event in the European Parliament to raise awareness of the challenges faced by children and adolescents with cancer in Europe. The topic this year was “Tackling Inequalities in Paediatric Cancer Care & Research across Europe”.
On 18th February 2014 the SIOPE European Parliament event ‘Tackling inequalities in paediatric cancer care and research across Europe‘ took place in the European Parliament, which was hosted by the Member of the European Parliament (MEP) Ms Glenis Willmott. The event started with a session on ‘The needs of paediatric oncology towards 2020’ and was followed by an all-embracing roundtable debate. A lot of stakeholders involved in paediatric oncology attended this high-level event: MEPs (Ms Antonyia Parvanova, Mr Alojz Peterle, Ms Glenis Willmott), representatives of the European Commission’s DG SANCO (Mr Enrique Terol) and DG RTD (Ms Vidal-Ragout), Ms Constance Hanniffy (Ireland, EPP) from the Committee of the Regions, as well as patient/parent advocates, survivors, paediatric oncologists and representatives from industry.
Lejla Kameric (The Heart for Kids with Cancer in FBiH, Bosnia & Hercegovina), Aimilia Tsirou (Greek Survivors Organisation “Kytarro”), Frédéric Arnold (UNAPECLE, France) and Neira Kameric (Bosnian Cancer Survivor Network “MlaadiCe BiH”) addressed in their statements the main issues affecting patients and parents in European countries.
Electoral Manifesto for Paediatric Oncology
On this occasion several Members of the European Parliament (MEPs) from different countries and party groups, including candidates running for the upcoming European elections in May, agreed to endorse the SIOPE-ENCCA-ICCCPO electoral Manifesto for Paediatric Oncology, a fundamental document which unites all stakeholders around concrete objectives to advance childhood cancer research, treatment and care.
The Manifesto has been already signed by MEPs Pr Philippe Juvin (France, EPP), Dr Antonyia Parvanova (Bulgaria, ALDE), Mr Alojz Peterle (Slovenia, EPP) and Ms Glenis Willmott (UK, S&D), and it is currently open for endorsement on SIOP Europe website by all those who care for the future of children affected by cancer. On SIOPE website you find the latest list of MEPs, organisations and people who endorse the manifesto. The Manifesto is already available in other languages (see below).
What needs to be done
During the high-level event in the European Parliament some key areas of work have been identified:
- Clinical trials are the foundation of progress in paediatric oncology, and they should be better regulated at the European level;
- Patients from all over Europe should have a greater access to clinical trials and state-of-the-art treatment and care;
- Childhood cancer registries are essential to monitor treatment outcomes, and should be implemented in all European countries;
- Sustainable support for childhood cancer survivors and long-term follow up should be provided across Europe;
- Healthcare professionals working in paediatric oncology should have continued access to medical education;
- More information on the disease and its treatment should be made available to patients and their families;
- Strategic partnership with parent/patient organisations is a driver of positive change;
- Outcome research should be enhanced in Europe.
The event provided a platform for all relevant stakeholders to speak on the burning issues from their unique perspectives. Childhood cancer parents and survivors, as well as paediatric oncologists and representatives from the European Commission and the Committee of the Regions actively described all the hurdles currently hampering patients’ and survivors’ access to standard treatment and care in different regions of Europe.
On the basis of the findings from the EUROCARE 5 report on childhood cancer survival, and on the recommendations set by theEuropean Standards of Care for Children with Cancer, all speakers and panelists agreed on the need to increase the cure rate for poor prognosis of paediatric malignancies and to enhance the quality of cure in survivors, addressing the existing inequalities in terms of research and care. The importance of reinforcing the collaboration between all stakeholders was central to the event.
The paediatric oncology multidisciplinary community has the potential to bring about a breakthrough in cancer research and care, leading to major impact on the lives of childhood cancer patients, parents and survivors.
Here you can find the “Electoral Manifesto for Paediatric Oncology”: