Isabelle Riquier, a French patient diagnosed with Multiple Sclerosis and living in Germany, testifies “I cannot be treated in Germany because France would not reimburse the global cost of treatment even though it is less expensive in Germany. I therefore need to travel once a month in France to get my treatment: this is very exhausting and requires a lot of administrative work. With the Directive, I hope to reduce this burden and avoid wasting energy to be able to concentrate on my wellbeing.”
Nathalie Chaze from DG SANCO stated that: “The Directive covers all providers and gives patients the reimbursement as if they were in their own member state. It empowers patients as it gives them the right to choose the healthcare they want and therefore to make informed choice.”
Speaking about the crucial role of National Contact Points (NCPs), the patients’ representatives discussed a model that meets the need of patients. “The ideal NCPs are accessible, accurate, available and customer-friendly. There should be an emergency hotline available to allow for q rapid response as well as information campaigns organised to raise awareness about this existing legislation”
Cees Smit, EGAN, who closed the meeting said: “Personally, I came here rather uninformed and I quickly felt overwhelmed by the great number of problems that could be associated with this Directive. However when I became more familiar with the problems, I also saw more and more solutions and opportunities that may give the patient community the tools to work with the Directive.”
There are still many areas of uncertainty in the implementation of the Directive, patients’ representatives saw their role in supporting patients' awareness of their rights, including in cross-border healthcare, and monitoring implementation carefully from their unique perspective.
To the patients’ representatives present at the event, Nicola Bedlington, EPF Director, said: “We hope that you will act as an ambassador from the patient community in further communicating and cooperating with other stakeholders to implement this Directive in your country. We also need to hear from you in the further evaluation process of how this Directive works in practice. We are all part of an informal network of patient leaders across the EU who collectively have a strong knowledge and understanding of the legislation and can help engage patients in different member states.”
About the EU Directive
The EU Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare was due to be transposed by Member States by 25 October 2013. Member States have had 30 months to transpose the Directive into national law and now the Commission urges those Member States who have not yet transposed the Directive to do so now.
The right to healthcare in other Member States already existed prior to the adoption of this Directive but it applied to prior authorisation or unforeseen medical treatment; there was no guarantee that the cost of hospital care would be met.
EPF position about the legislation
While the final compromise fell short of our ambitious vision, this legislation is still an important milestone for patients. Much now depends on the way the Directive is implemented by Members States as many of the provisions are optional or leave room for interpretation by them.
EPF welcomed the creation of National Contact Points (NCP) for information. The number and precise form they will take is again left up to the Member State to decide.
Patient organisations can contribute to the efficient running of the NCPs by ensuring effective dissemination of information to the grassroots level. They can further engage proactively by liaising with the relevant ministries and parliament to make sure that proposed laws on, for example reimbursement, are patients-friendly as well as calling on national governments to set up a system for ‘direct payments’ as referred in Article 9 (5).
About the Conference
As much depends on the way the Directive is transposed by Members States, we will organise a set of conferences on this topic to encourage national patients’ organisations make full use of the opportunities.
Around 40 patients’ organisations representatives from The Netherlands, Luxemburg, Germany, France and Belgium attended this first conference. Further events will be organised in 2014 in other EU countries.
About the European Patients’ Forum (EPF)
The European Patients’ Forum (EPF) ensures that the patients’ community drives policies and programmes that affect patients’ lives to bring changes empowering them to be equal citizens in the EU.
EPF currently represents 61 members, which are national coalitions of patient organisations and disease-specific patient organisations working at European level. EPF reflects the voice of an estimated 150 million patients affected by various chronic diseases throughout Europe.
EPF has developed a set of recommendations to guide the national authorities and bodies to ensure that this Directive brings tangible benefits for patients and healthcare.