Cross-border healthcare is key for rare diseases. European collaboration is of particular added value for this field which relies on exchange of knowledge and expertise. The fact that patients can access care and treatment in another European country, in the context of the Cross-Border Healthcare Directive, allows for patients with rare diseases to benefit from state of the art care adapted to their condition. The Directive is one of the founding texts of the European Reference Networks for Rare Disease: amongst their goals is the improvement of the knowledge and care of the rare diseases they cover, and the fostering of research.
The European Court of Auditors recently released a new report assessing the Commission’s actions and policies in the context of the implementation of the Directive. It details a few observations regarding the policy implementation and structure for cross-border healthcare and draws a set of conclusions and recommendations. The aim of the report was to “examine whether the Commission has overseen the implementation of the Directive in the Member States well and provided guidance to the National Contact Points responsible for informing patients about their right to cross-border healthcare“ and “examine key recent EU actions in the field of rare diseases focusing on the creation of the European Reference Networks”.
The report claims that the Commission has overseen the process well and has been instrumental in supporting the work of National Contact Points in charge of disseminating information for cross-border patients. Nevertheless, a few challenges remain to be solved in terms of accessibility and awareness of healthcare possibilities abroad.
Therefore, the Court makes a few recommendations for the improvement of the implementation of Cross-border Healthcare Directive in the report. The first point concerns the provision of more support for National Contact points by providing guidance and information about European Reference Networks or by including an implementation plan in the 2018 eHealth strategy. The second point is to improve the preparation for cross border exchanges of health data, for example by assessing the results achieved for cross-border exchanges of health data via EU-wide eHealth Infrastructure (for ePrescriptions and Electronic Patients Summaries) and by ensuring that ERNs are financially sustainable. The third point outlined is to better support rare disease patients’ access to healthcare for instance by questioning and possibly adapting the European rare disease strategy and to try to address the difficulties experienced by ERNs which are said to face important challenges as regards to their financial sustainability and their ability to operate effectively. It is also suggested to simplify the structure for EU funding and reduce their administrative burden.
The Commission thanked the Court for the auditor’s report and accepted most of the recommendations. It also recalled its past actions and achievements such as the publication of guiding principles for the practice of national contact points for information provision or the already 550 e-prescriptions issued between end of January and end of February. It also reminded the auditors of the complexity and political sensitivity of the ERN initiative.
ERNs are probably one of the main advancements in the field of rare diseases in the last decade and offer a whole variety of opportunities for further discoveries and innovations in research, treatment and care. Thus their sustainability is fundamental and it is vital to provide sufficient support to their work.