SIOP Europe and CCI Europe have the ambitious goal of beating childhood cancer, with the aim of curing more and curing better – towards zero deaths and zero late-effects.
Brussels, Belgium – The SIOP Europe and CCI Europe Manifesto for the European Elections of 2019 was launched at the International Childhood Cancer Awareness Day event hosted by MEP Elena Gentile (IT, S&D) at the European Parliament on 6 March 2019. MEPs Alojz Peterle (SL, EPP), President of the MEPs Against Cancer (MAC) Group, and Lieve Wierinck (BE, ALDE) also contributed on this occasion.
This Manifesto outlines the vision “Beating childhood cancer: Cure more and cure better – Towards zero deaths and zero late effects”. The paediatric oncology and haematology community in Europe together with parents, patient and survivors invites the next European Parliament to sustain and reinforce its support for the paediatric cancer cause.
Beating childhood cancer
Despite some progress, paediatric cancer remains a major public health and social issue in Europe as cancer remains the main cause of death by disease in Europe in children aged one year and over.
Each year, more than 35,000 children and young people are diagnosed with cancer and more than 6,000 young patients die of cancer. Moreover, there will be nearly half a million childhood cancer survivors by 2020-2025.
Over two-thirds of these childhood cancer survivors experience long-term health and psychosocial problems due to their disease and treatment, which may be severe and affect their daily life and participation as EU citizens.
The European Elections Manifesto
The 2019 European Elections Manifesto, launched and adopted on 6 March, gives key recommendations to the MEPs:
- To advance an enabling legislative environment for faster and more efficient development of affordable innovative medicines for children with cancer and other life-threatening diseases
- To foster allocation of resources to childhood cancer research with an increased focus on big data and deep learning tools
- To ensure sustainability of the European Reference Networks (ERNs), of which ERN PaedCan is dedicated to paediatric cancer, especially to combat inequalities in access to the best available treatment and expertise for children across Europe
- To support collaborative efforts on the development and implementation of appropriate surveillance guidelines and long-term models of care for survivors of childhood cancer
- To support initiatives on interoperability, harmonisation and security of eHealth platforms to foster cross-border research and knowledge transfer for the benefit of childhood cancer patients and survivors
- To support initiatives that foster and promote patient advocacy and empowerment in research, healthcare, and socio-economic areas.
Crucial to have a cooperative approach
Individual types of cancer in children and adolescents are rare, but taken together, they represent a leading public health and socio-economic issue in Europe. The rarity of individual paediatric cancer types and their high collective health burden across Europe make coordinated EU level approaches crucial. Patients and affected families stand to gain considerably from pan-European cooperation in both research and healthcare.
Ensuring equal rights and adequate social protection for parents, patients and survivors is an important underlying priority. EU legislative processes should be proactively monitored so they integrate the health, research and socio-economic needs of the paediatric haematology oncology community into new initiatives.
Resolute support to finding a way of beating childhood cancer
During its 2014-2019 mandate, the European Parliament provided resolute support to the paediatric oncology and haematology community. Key milestones included: Launch of the SIOP Europe Strategic Plan – A European Cancer Plan for Children and Adolescents in cooperation with the MEPs Against Cancer Group (MAC); European Parliament vote on the resolution regarding the Paediatric Regulation; Celebration of 20 years of action towards a brighter future for children and adolescents with cancer at a special event in cooperation with the MEPs Against Cancer Group (MAC); Expression of continuous commitment and support from our champion MEPs at the Annual International Childhood Cancer Awareness Day event at the European Parliament. We are very grateful for the drive, commitment and support the outgoing legislators have shown to the paediatric cancer cause.
MEP Elena Gentile (IT, S&D) said: “During the current European Parliament term, we have gathered many times to state the urgent public health and societal issues that childhood cancer continues to pose in Europe. We have also formulated solutions and most importantly took resolute actions to advance the necessary changes. The European Elections 2019 will be an important opportunity to raise further political awareness and consolidate the support for the childhood cancer cause in Europe.”
Professor Pamela Kearns (SIOP Europe President) said: “The keywords that have been crucial are: working together, collaboration and partnership. Such firm and committed alliances have enabled us to make progress in paediatric oncology over the past 20 years. Working together and collaboration are at the heart of improving outcomes for childhood cancers.”
Anita Kienesberger (CCI Europe) said: “It is crucial that our lawmakers at the European level support the vision of collaboration with all stakeholders on research and healthcare initiatives by encouraging patient, parent and survivor empowerment, with consideration for the socio-economic dimension.”
Both SIOP Europe and CCI Europe are committed to working with the incoming European legislators to meet the challenges that greatly impact children with cancer and adolescent cancer patients and survivors’ lives, beating childhood cancer brings them one step closer.
With elections to the European Parliament due in May, the entire paediatric cancer community looks forward to paediatric cancer staying high on the agenda for the upcoming legislature.
The European Society for Paediatric Oncology (SIOP Europe) is the only pan-European organisation representing all professionals working in the field of childhood cancers.
Childhood Cancer International – Europe (CCI Europe) represents parents, patients and survivors as well as other childhood cancer organisations in Europe.