Brussels, 08/09/2014 (Agence Europe) - At the end of the first quarter 2014, 16 member states had a national strategy in place for fighting against rare diseases, says a European Commission report published on Friday 5 September. These countries are Belgium, Bulgaria, Cyprus, the Czech Republic, France, Germany, Greece, Hungary, Lithuania, the Netherlands, Portugal, Romania, Slovakia, Slovenia, Spain and the United Kingdom. Only four of them had established a national strategy in 2009 (Bulgaria, France, Portugal and Spain). The strategies are nevertheless only at a preliminary stage - which is why monitoring will be needed at European Union level to support the policy of member states and encourage cooperation and coordinated action at European level, the Commission states.
In a 2008 recommendation from the Council of the EU, the member states committed themselves to adopting a plan or strategy more quickly for addressing rare diseases - and by the end of 2013 at the latest. In a communication published the same year, the Commission committed to writing a report on the application of the strategy - which is the subject of the report published on Friday. The report delivers the results on the application of the rare diseases strategy up to now, and reviews the progress made and the lessons learned. It seeks to draw conclusions as to the way in which the measures provided for by the communication and the recommendations have been implemented, and on the need for further action to improve the existence of patients and their families.
In its report, the Commission notes that the degree of execution for the plans varies enormously between countries. This difference is especially due to the fact that several countries - such as Belgium, Germany, the Netherlands and the United Kingdom - have only adopted their plan or strategy recently. Only France has actually completed the execution of its first plan and adopted a second. Furthermore, most member states do not have a specific budget for executing their plan and the funds are normally taken from the general health budget - which poses problems for some countries, given the pressure that the economic crisis brings to bear on their budgets. The report also notes that the scope of the national plans is variable and that 14 countries have also conducted information campaigns on rare diseases. Cyprus, Germany, Croatia and Latvia are also working on such campaigns. As the follow-up and analysis of the national plans are important aspects of the European strategy for fighting against rare diseases, the European Union has co-financed EUROPLAN (European Project for Rare Diseases National Plan Development) and, subsequently, the European Committee of Experts on Rare Diseases (EUCERD) joint action, in order to establish a framework enabling the member states to draw up and execute their national plans. Those who have already put their plan into force are therefore basing their monitoring strategy on the EUROPLAN indicators.
In conclusion, the objectives of the communication and the recommendation have been met as the actions implemented have enabled collaboration to be strengthened between the EU, the member states and the relevant stakeholders, the Commission states. However, it continues, there is still a long way to go before patients suffering from rare diseases are ensured of obtaining the right diagnosis and best possible treatment throughout the EU. While certain countries still do not have a national plan, most of the others are only at the beginning and their progress will have to be followed closely, the Commission adds.
The English version of the document can be found at:
http://ec.europa.eu/transparency/regdoc/rep/1/2014/EN/1-2014-548-EN-F1-1.Pdf . (IL)