By Jolanta Dičkutė - 24th November 2008
“The conference made clear that there is still room for improvement and that Europe needs a coherent overall strategy for rare cancers”
MEP Jolanta Dickute
I was delighted to have the opportunity of addressing the recent ESMO conference on rare tumours earlier this month.
My presentation, on the perspective of the European parliament on methodological and regulatory challenges, was especially relevant, as rare cancers are of crucial importance and are a field where initiatives have already been taken by the European parliament to improve the situation.
The objective of the conference was to identify the main challenges and come up with a final list of recommendations addressing this serious health burden for the EU.
The development of new drugs, patient access, regulatory and methodological as well as organisational challenges were among the key issues discussed by the main speakers and by a very active audience representing the wide-ranging community dealing with rare cancers.
The picture in Europe is not a pretty one, with patients facing difficulties accessing knowledge and expertise, problems over delayed diagnosis, difficulties over access to care, widely differing services depending on availability and quality between, or even within, member states, specific bottlenecks in developing clinical trials and new drugs, and a lack of information sharing and coordination within, and across, member states.
The European institutions have nevertheless taken several significant initiatives to address these issues. The European parliament’s resolution on combating cancer in an enlarged EU adopted in April 2008 is one of them.
The resolution suggests that a harmonised system for collecting data across member states should be installed in order to ensure that data on cancers are comparable and can be shared.
In a specific paragraph on rare cancers, the parliament’s resolution “calls on the commission to deploy resources from the structural funds and the seventh research framework programme to create and fund reference networks for rare cancers and cancers which are difficult to treat, in order to pool resources and expertise and improve diagnosis and treatment”.
The resolution is certainly an important step forward in addressing the need for data as well as the need for integrating available medical expertise but may not be considered as an isolated initiative.
Initiatives on cross-border healthcare and health professionals can hopefully in the near future also be part of the whole strategy required by rare cancers in Europe.
The conference made clear that there is still room for improvement and that Europe needs a coherent overall strategy for rare cancers, both at community level and within member states. Cooperation and mutual support must be optimal for the benefit of patients in Europe.
All sectors must be involved to increase the interaction between researchers, politicians, regulatory bodies, patients and the pharmaceutical industry.
The communication from the commission and the proposal for a council recommendation on European action in the field of rare diseases earlier this month indicates the way forward in working together to make a difference for millions of people.
