The childhood cancer problem is far from being solved, and SIOPE has been ceaselessly working to change this situation. Cancer is still a life threat for too many young patients: it is the first cause of death by disease for children in Europe, 1 out of 300 new-borns will develop cancer before turning 20, and every year around 6,000 young people die of cancer. In addition, most survivors from this disease will experience adverse side effects. The most pressing concerns can be summarised as follows:
- The paediatric cancer cure rate reached its plateau, a point where no major improvements in the survival rate are occurring any longer;
- Children and adolescents with cancer require treatment in cross-border clinical trials due to the limited numbers of patients with specific form of the disease within national borders. However, participation in such trials is often cumbersome, in large part due to the bureaucratic obstacles;
- While adult oncology is rapidly integrating innovative treatments in daily practice, progress in paediatric cancer treatments lags behind. Childhood cancer is not prioritised by the industry sector, and innovative therapies are very rarely developed. Research is thus mainly led by academia, but funding is not sufficient a nd treatments are often not adapted to age;
- There are major inequalities in access to quality treatment, expertise and follow-up across different European regions Furthermore, only a few national cancer plans have provisions specific to the disease in children and adolescents;
- Young survivors often face severe consequences for their growth and fertility: two thirds of the 300,000 childhood cancer survivors currently living in Europe suffer from treatment-related late-effects and require specialised follow-up care.
Knowing that several actors in Europe – institutions, organisations, individuals – could do more by coordinating their efforts in a more effective way, SIOPE decided to identify ways to jointly address this major health issue in the framework of the FP7 project ENCCA. After seeking the consensus of the entire paediatric cancer community via an extensive consultation process – with the prominent role of parents, patients and survivors – and following the considerable support received at the 2014 SIOPE-ENCCA conference, SIOPE partners successfully finalised and committed to implement a long-term European Cancer Plan for Children and Adolescents to increase the cure rate of childhood cancer and improve the lives of survivors.
In 2015 this newly formulated Strategic Plan has been officially launched on two occasions: first in September, when it has been presented to professionals across the cancer continuum at the European Cancer Congress, and then last November at the event SIOPE – MAC Launch, where it has been illustrated to policy-makers and other EU stakeholders at the European Parliament.
At the European Cancer Congress in Vienna, Austria
SIOPE President-Elect Martin Schrappe and President Gilles Vassal introduced the SIOPE Strategic Plan at the European Cancer Congress. The ultimate goal of the SIOPE Strategic Plan is to increase the survival that is free from disease and late effects after ten years from the disease, and beyond. “This is a serious problem, for patients, their families, and for health services, with major inequalities existing across Europe”, said Professor Vassal. “Add to this the fact that 35% of such cancers normally occur before the child is five years old, and that many paediatric cancers are difficult to treat, and you will understand why we thought it essential to try to tackle this problem in a practical way.” The Plan is structured around the achievement of 7 main objectives (see box nr 1) and sets up several cross-tumour platforms and projects to facilitate the Plan’s implementation spanning the critical variables influencing success (see box nr. 2). SIOPE will steer and coordinate the effective implementation of the Plan together with all relevant stakeholders, by strengthening existing partnerships and establishing new ones (see box nr. 3).
An important issue for SIOPE is improving the quality of life for survivors. “We believe that in 2020, there will be nearly half a million European paediatric cancer survivors, and many of them will have side effects that are severe enough to affect their daily lives. While the fact that so many survive is a cause for rejoicing, we have a duty to provide them with optimal long term care so that the rest of their lives may be as normal as possible. One way of doing this would be the creation of a ‘Survivorship Passport’ for each child and adolescent cured of a cancer. This would contain a history of their disease and treatment together with relevant follow-up measures aimed at improving their quality of life, and a database for storing the clinical data and hence facilitate monitoring and research,” said Prof Schrappe, who will become the President of SIOPE on January 1st, 2016.
At the European Parliament in Brussels, Belgium
‘This is not acceptable’ was the leitmotif of the SIOPE – MAC Launch meeting at the European Parliament, co-organised by SIOPE and the Members of the European Parliament Against Cancer (MAC) Group, and kindly hosted by President of MAC MEP Alojz Peterle (Slovenia). More than 120 participants committed to address the burden of childhood and adolescent cancer by showing their support to the European paediatric oncology community and saying out loud that childhood cancer should always be a priority for the European Union. This event gave a unique opportunity for all relevant stakeholders to provide their perspectives on this subject, focusing on the following three crucial areas:
- Inequalities: Eradicating inequalities in access to treatment, care, and expertise
Access to quality healthcare is a basic EU citizen’s right, but when it comes to cancer, access to treatment and survival among children and adolescents is “unequivocally unequal”. A child with cancer in Eastern Europe is 10-20% less likely to survive than in richer Member States, and standards of care are not equally applied. Parent advocate Irina Ban (Serbia) pointed out that childhood cancers are often ignored in national cancer plans and registries, where they exist, and that patients’ families often face serious economic problems when opting for a better treatment abroad. She also thanked SIOPE and the parent’s network CCI Europe Regional Committee for their initiatives to provide equal access to best treatment across Europe. One of those is ExPO-r-Net, illustrated by its coordinator and SIOPE Board member Prof Ruth Ladenstein (Austria). If ENCCA was the right framework for joining forces within the paediatric oncology research community, this DG SANTE project aims to provide high-quality healthcare to children in Europe, no matter where they live, by building a European Reference Network (ERN) of healthcare centres with resources and knowledge in specific malignancies and finding the best way for patients’ families to access this expertise (e.g. via e-Health solutions).
- Innovation: Boosting innovation in medicines development
Targeted drugs and immunotherapy are increasingly used in adult cancers, but current oncology treatments do not consider the variables that are specific to children (e.g. organ maturation) and the development of new medicines is very slow. Parent advocate Patricia Blanc (France) and SIOPE Board member Prof Pamela Kearns (UK) stated that significant changes are desperately needed: while regulators are speaking, in each European country one child dies of cancer every day. Although the EU Paediatric Regulation has been a useful initiative to speed up paediatric drug development, this is still mainly driven by the adult cancer “market”. The SIOPE-CDDF-ITCC Paediatric Platform was created to address the identified bottlenecks by intensifying multi-stakeholder cooperation (among academia, parents and survivors, industry and regulators, as well as policymakers and charities) and make concrete proposals on how to speed up the process and to change the current Regulation. Ms Blanc is also part of the parent-led network Unite2Cure, currently calling for better access to treatment.
- Survivorship: securing optimal organisation of follow up care for survivors
In 2020 there will be half a million childhood cancer survivors in Europe, and the majority of them experience very specific adverse late side-effects (e.g. fertility, heart failure, and early death). Jaap den Hartogh (The Netherlands), a childhood cancer survivor currently working in the Dutch Childhood Cancer Parent Organization, affirmed that an urgent improvement is needed in research on late effects, long-term follow up and transition from paediatric to adult oncology. Both former patients and GPs should be more aware of the specific condition of a “paediatric cancer survivor”: Riccardo Haupt (Italy) observed that childhood cancer survivors’ experiences are different, but they often notice that their GP doesn’t have the knowledge to understand their situation, and base diagnosis on wrong conceptions. The ‘Survivorship Passport’ will help address this situation (see article in this newsletter).
An open roundtable at the end of the meeting addressed the advocacy role of NGOs and the importance of considering the specificities of paediatric cancer. Many panellists were afraid that the “lowest common denominator” will be applied in the expected changes, and underlined the need for wider enabling EU initiatives in this field as – although ‘Europe is moved by the force of ideas’ – adequate funding is needed to make this change possible. Dialogue and partnership with policymakers and other stakeholders are key to producing the life-changing solutions proposed; our children’s lives depend on how SIOPE’s demand will be met in the future.