Why more needs to be done to help children with cancer
More than 60 types of cancer occur in children and more than 6,000 children and adolescents die of cancer within Europe every year. Professor Martin Schrappe, University Hospital Kiel, Kiel, Germany analyses the many factors that contribute to the current crisis within paediatric oncology and argues that more needs to be done to help children with cancer
Cancer is a global emergency, and we are used to the overall number of patients growing with every passing year. Most people however think that this major public health issue almost exclusively affects adults and the elderly or that, anyway, paediatric cancers are a rare disease. This is not completely true. There are more than 60 types of cancers that occur in children and adolescents: each individual type may be rare, but taken together paediatric cancers represent a death sentence for too many patients.
Every year 6,000 children and adolescents die of cancer, and one out of 600 newborns will develop cancer before turning 20. If it is true that children and adolescents are more responsive to treatments and, thus, many young patients survive – 300,000 survivors in Europe, expected to become approximately half a million in 2020 – it is also true that suffering from cancer during such a delicate phase of life can induce severe problems at a later stage (infertility, hearing loss, cardiac dysfunctions, etc.).
Two-thirds of European survivors suffer indeed from late side effects of treatment, which can be severe and have an impact on the daily life of half of those affected. Last but not least, the overall level of care and the survival rates in many Eastern European countries are lower than those in Western and Northern Europe.
Many factors could contribute to improve this situation. More funding would speed up the necessary research advances on these specific types of cancer, biologically different from adult cancers. Better and more structured cooperation at the European level would ensure that the mutually agreed European Standards of Care for Children with Cancer are used as a reference throughout the region and that high quality specialised care becomes accessible to every patient. The set-up of dedicated processes and tools to ensure a coherent follow-up after the end of treatment would contribute to better outcomes and a healthier life for survivors.
This is why the European Society for Paediatric Oncology (SIOPE) undertook a major collective effort to define a structured way to tackle all the issues encountered by childhood cancer patients and professionals in Europe.
SIOPE gathers the expertise and knowledge of paediatric cancer specialists from all over Europe (more than 1,500 professionals from 34 countries). Since 2013, SIOPE closely cooperated with parents, patients and survivors as well as other stakeholders committed to improve young patients’ chances of being cured, finalising last year a consensus-based strategy to increase the cure rate and the quality of long term survival of children and young people with cancer.
After its presentation to the medical community at the 2015 European Cancer Congress, we officially launched the SIOPE Strategic Plan last November at the European Parliament, where all participants agreed that childhood cancer should always be a priority for the European Union. In line with this agreement, we continue to actively engage to influence EU policies and legislation to improve patients’ access to quality research, healthcare, and follow-up across the region.
A recent example of our engagement in this sense was the Conference ‘Review of the EU Paediatric Medicines Regulation: Let’s do more for children with cancer’ (7 September 2016, European Parliament, Brussels), an important event addressing the effects and potential review of the EU Paediatric Medicines Regulation to ensure a better access to innovative therapies for childhood cancer patients – in line with the SIOPE Plan’s objective ‘Innovative therapies’. This Plan is the most important development in paediatric haematology-oncology over the past decades.
Our priority today is to make it a reality, with the help of everyone, and our Society took the lead in coordinating all the phases of its implementation. We already started so far several cross-tumour platforms and projects, to address for instance the need to have more and better clinical trials within the new EU Clinical Trials Regulation (via the Clinical Trial Facilitation platform), to develop innovative anticancer paediatric medicines in a timely fashion (via the ACCELERATE Platform, see article in this journal at page 32), and to ensure minimal treatment-related radiotherapy side effects (through the QUARTET project, see article in this journal at page 32).
Importantly, the SIOPE community also submitted an application for a paediatric oncology European Reference Network (ERN) in the rare cancers field: building on the work performed within the project ExPO-r-Net, this ERN will establish a framework to provide cross-border healthcare for complex conditions requiring a concentration of expertise.
You too can play a role in reaching the goals of our ambitious Plan. Thanks to your support, we could finance research fellows and continue to carry out all the planned projects and initiatives to improve young people’s chances of surviving this disease. If you think that children and adolescents with cancer deserve a brighter future, join the SIOPE community and contribute to what we do (www.siope.eu/donate)
The outcome of this far-reaching exercise is the comprehensive SIOPE Strategic Plan, ‘A European Cancer Plan for Children and Adolescents with Cancer’, which targets the following objectives:
1. Innovative treatments: to introduce safe and effective innovative treatments into standard care;
2. Precision cancer medicine: to use improved risk classification as well as biological characteristics of both the tumour and patient to help guide decisions on which therapies to use;
3. Tumour biology: to increase knowledge of tumour biology and speed up translation from basic research to clinical care to benefit patients;
4. Equal access: to bring about equal access across Europe to standard care, expertise and clinical research;
5. Teenagers and young adults (TYA): to address the specific needs of TYA in cooperation with adult oncology;
6. Quality of survivorship: to address the consequences of cancer treatment and to improve quality of life of childhood cancer survivors;
7. Causes of cancer: to understand the causes of paediatric cancers and to address prevention wherever possible.