2ème Conférence sur les Réseaux Européens de Référence 8-9 octobre 2015, Lisbonne Table ronde ministérielle (8 octobre 12 :15 13 :00) «ERN a strategic value for European citizens and health care citizens» (en présence de : Xavier Prats-Monné, Directeur Général, DG SANTE, et Paulo Macedo, Ministre de la Santé, Portugal) Eléments d intervention de Madame la Ministre Lydia MUTSCH 1
Dear Minister, Dear Director General, Dear Participants, Ladies and Gentlemen, I am particularly honored to speak in front of you today. This conference is an important momentum. It shows that, two years after the transposition deadline of the Directive, things are starting to fall into place and provisions are becoming a reality. The Commission has been relentlessly working on the implementation of the European Reference Networks since the adoption of the Directive in 2011 in order to fill this concept with life. The first Networks are expected to be approved next year. Only very recently I could experience myself that the idea of the added value of the Networks is gaining in importance among the Member States. I indeed had the pleasure to discuss the implementation status of the cross-border Directive no later than two weeks ago with my other 2
colleagues and with commissioner Andriukaitis during the Informal meeting of health ministers in Luxembourg (24-25.09). I think it is safe to say that a large majority of the health ministers joined the finding of the Commission s implementation report published early September according to which there is still a lot that can be done in order to make the Directive become an instrument of real added value for our patients. Patients need to become much more aware of their rights under the Directive and of how to exercise them. We need more information and better information. Ministers also largely agreed that much can be done in the field of crossborder cooperation between Member States. I have participated in a panel at the European Health Forum Gastein last week where the Commissioner said that the Lisbon Treaty doesn t stop us from doing more: Member States can and should cooperate more. I can only agree to this and I am convinced that the European Reference Networks will play a crucial role in this ambitious endeavor. This has also been the opinion of some of the health ministers during the Informal Council in Luxembourg. I heard them say that the European Reference Networks can make a real difference for patients suffering from a rare or complex disease to get access to the medical expertise 3
needed (NDLR: BE). Some considered the Networks to be already a reality (NDLR: ES, soutenu par FR et PT) Just as important as will be the awareness raising concerning the rights of patients under the Directive, will be the awareness raising concerning the potential and possibilities offered by the European Reference Networks. To realise this potential, ongoing support and commitment from all sides will be necessary. Ladies and Gentlemen, Patients are at the heart of European Reference Networks. They are also at the heart of the public health priorities chosen by the Luxembourg Presidency together with innovation. Every citizen should benefit from equal access to diagnosis, treatment and the provision of high-quality healthcare. Patients perspective and involvement in the implementation of the cross-border Directive are absolutely necessary if we want to make sure that its provisions are of real added value. 4
The main benefit of ERNs will be the improvement of access to both diagnosis treatment, resulting in high quality and cost-effective health care for patients with a medical condition requiring a particular concentration of resources or expertise, particularly in domains where such resources and expertise are rare. These objectives have been among the underlying topics of the Luxembourg Presidency s high level conference on 8 July on Personalised Medicine. Personalised Medicine starts with the patient. It has the potential for improving the health of many patients and ensuring better outcomes of health systems efficiency and transparency. Yet, its integration into clinical practice and daily care is proving difficult given the many barriers and challenges to timely access to targeted healthcare that still exist as of today. I am convinced that the European Reference Networks role in the access to Personalised Medicine often referred to in relation to the treatment of rare cancers, but not restricted to these conditions - will be extremely relevant. Beyond improving diagnosis, treatment and healthcare for conditions where resources and expertise are scarce, ERNs have a huge potential in various fields and I would like to highlight the following ones: 5
to enhance European co-operation on highly specialised healthcare, to pool knowledge, but also to maximize the scale of diffusion of innovations in medical science, and, last but not least, to help Member States with an insufficient number of patients to provide highly specialised care. For Member States with an insufficient number of patients, European Reference Networks can make a real difference: they offer new perspectives in getting access to most valuable knowledge, skills and know-how. They further represent an opportunity for the European Union to cultivate a degree of European solidarity by encouraging Member states health systems to partner on the level of knowledge pooling and expertise sharing. The success of the Networks will also depend on the way how the different actors and Member states are involved in this ambitious project. Speaking of small Member States, Luxembourg is surely one of those Member States where, due to the lack of critical mass for a significant 6
number of conditions, resources and expertise are not available for affected patients and families. My country has since the start been a fierce advocate of the cross-border Directive. We have a long tradition of sending patients abroad for specialized treatment. Luxembourg is one of the countries where the great majority of prior authorization requests are granted. Let s not forget that the jurisprudence Kohll-Decker that has been codified by the Directive is about two Luxembourg nationals seeking healthcare in Germany and Belgium respectively. It is true that patients prefer to receive healthcare close to home and to their families, but for those suffering from a rare or complex conditions, the best available healthcare is often beyond the border. For small Member States to fully benefit from the expertise of the networks more specifically, it will be important to be intimately linked to the process so as to avoid that their patients and healthcare professionals are being overlooked. It is indeed crucial for patients affected by rare conditions from smaller Member States to be able to access to high quality care across the border. 7
The role of a Presidency is to steer the agenda of the European Union and to bring topics of political relevance forward. I consider the task of fostering the concept of European Reference Networks as a particularly important and noble one. I sincerely hope that, by focusing on the implementation of European Reference Networks, by facilitating the exchange of information and expertise on establishing and evaluating such Networks, and by reinforcing political support and commitment, this conference will mark an important step forward. The Commission has chosen the slogan SHARE. CARE. CURE. for the European Reference Networks. European Reference Networks are based on the voluntary participation of Member States. It is therefore vital to promote the commitment of Member States in order to engage actively into this new experience of sharing in order to raise diagnostic and care to the best European Standards, but also to ensure the long term sustainability of centers of expertise and reference networks. Obviously the necessary financial support will also be vital in that respect. 8
Dear participants, Today, I would like to join the Commission s call for action: Let s look together into the next steps of the deployment process, in preparation for the forthcoming call for European Reference Networks in early 2016. Let s make European Reference Networks become a reality! Thank you very much for your cooperation. 9