There has been a strong commitment by the Members of the European Parliament to
support the paediatric haematology-oncology agenda, for instance via their endorsement
of the SIOPE-ENCCA-ICCCPO Manifesto for Paediatric Oncology.
Advocacy groups of parents, patients and survivors advocates are increasingly well
organized in Europe (through Childhood Cancer International (CCI), formerly ICCCPO)
and are strongly committed and equal partners in the European care and research agenda.
Charities in several countries are committed to support and finance research programmes
on cancer in children and teenagers.
There is a possibility that due to factors such as a high cure rates, decision-making leaders
at the European and national levels might consider that paediatric cancer is not a priority,
supposing that all efforts should be concentrated only on cancer prevention in adults
and on transforming cancer into a controlled chronic disease in the ageing population.
The global economic crisis hindered the capacity of several EU Member States to improve
their healthcare system to deliver standard treatments for young people with cancer.
There is limited access to some essential medicines, due to drug shortages and to the high
price of new medicines.
Issues around the lack of collection of data in patients with diseases that have a good
prognosis under standard treatment mean that the quality of care and, eventually, the
probability of cure will be decreased.
Wide-ranging EU regulatory initiatives might negatively impact the implementation of the
goals of the paediatric haematology-oncology community, for example the EU General
Data Protection Regulation (2012/0011(COD)) under discussion at the time of publication
could impact on research and trials.
THE SIOPE STRATEGIC PLAN
From AIEOP. Credit Attilio Rossetti photographer, Italy
“The needs of children with cancer have not been
high on the political radar” (Richard Sullivan, UK)