Specialists’ call on MEP’s to improve childhood cancer treatment

Europe should take all possible measures to enhance the existing collaboration between paediatric oncologists, both in the treatment and research of childhood cancers. Paediatric oncologists are concerned that current and proposed EU legislations could jeopardise this collaboration and, as a consequence, could impact on the provision of optimal treatment for children with cancer. This was the warning given at a Lunch Debate at the European Parliament in Strasbourg, France (on Wednesday 27th October) organised jointly by Dr. Peter Liese, MEP, and the Federation of European Cancer Societies (FECS) and its society of paediatric oncologists (SIOPE).

“As cancers in young people are relatively rare, treatment requires a particular concentration of resources and expertise at EU level”, explained Prof. Michael Stevens of SIOPE. This is why paediatric oncologists have a long tradition of collaborating both in aspects of cancer care as well as in academic clinical research. However, they urgently need the support of the EU decision-makers to be able to continue this absolutely essential collaborative approach. Addressing an audience of MEP’s, European Commission officials, health professionals and journalists, Prof. Stevens described how, “although cancer under 18 years of age may be relatively rare, it is still the most common medical cause of death after the first year of life and occurs at a rate of about 175 cases per million young people (aged less than 18 years) each year and, cumulatively, the individual risk approaches 1:500 by the age of 18.” “For countries where the best survival rates of approximately 70% can be achieved, 1:700 young adults is a survivor of childhood cancer”. “Nevertheless, it is important to recognize that whilst there was, approximately, a 50% reduction in mortality in the years from 1970 – 1990, there has been a further reduction in mortality of only about 2% in the past 10 years”.

As a consequence of its low incidence and its unique biology, childhood cancers provide very different challenges to doctors and carers involved in treating the disease. However, with optimal treatment, significantly higher cure rates can be achieved in children than can be achieved for most forms of adult cancer. “To enable these cure rates to be widely achieved across Europe (rather than in a few countries only, as is presently the case) there need to be urgent changes made to a range of issues that currently hold back the progress of delivery of quality treatment for paediatric cancer across the entire European Union”, explained Prof. Stevens.

Three main areas where changes to legislation could lead to improved survival rates for children suffering from cancer have been identified:

1) Most of the drugs used to treat paediatric cancers do not have a licence for paediatric use and are out of patent. Clinical trials to establish valid safety and dose/schedule data for these existing drugs are of crucial importance. The current proposed regulation on “paediatric medicines” (adopted by the Commission in September 2004: http://pharmacos.eudra.org/F2/home/.html) is very much welcomed but focuses very much on products covered by a patent or a SPC but doesn’t foresee enough support for out of patent drugs and for academic research aimed at identifying the best therapeutic protocol. The EU urgently needs to allocate financial support to this type of research.

2) The enormous challenges raised by the EU Clinical Trials Directive, which doesn’t properly take into account the specificities, and the relevance to public health, of academic clinical research, jeopardise the future work of the already established network of paediatric oncologists involved in international collaborative clinical trials. MEP’s should raise, in their countries, the problems the Clinical Trials Directive will cause for academic clinical research and, if necessary, consider the need to re-open the Directive.

3) Improving collaboration between paediatric oncologists should also be addressed by suggesting changes to the structural organisation of care in Member States. This would lead to optimal treatments and better outcomes across Europe. Paediatric oncology experts recommend that the European Parliament includes in its resolution about the European Commission’s communication on “Patients’ mobility”, the concept of a feasibility study on “shared care” by which a “centre of reference” is responsible for diagnosis, treatment planning and some aspects of treatment delivery but where other aspects of care are delivered closer to home, under the guidance of the ’centre of reference’ and according to well established standard protocols, supported by robust staff education programmes and delivered in partnership with parents and carers.

Mrs. Marianne Naafs-Wilstra, speaking on behalf of the International Confederation of Childhood Cancer Parent Organisations (ICCCPO), endorsed these calls for action. “ Politicians should strive to ensure that all children with cancer receive the same diagnostic and therapeutic possibilities, and the same level of care, as is currently received by only a minority of children in the EU”.

“Immediate action to tackle these three areas is of paramount importance to improve the outlook for children with cancer all across Europe”, added Prof. Stevens. “The Federation of European Cancer Societies, ICCCPO and paediatric oncologists across Europe (through SIOPE) are united in asking for these concerns to be addressed at the highest level”.