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I'm Alfonso Aguarón and I welcome you to my blog. Inspired by my own diagnosis of a Hodgkin's Lymphoma in 2008 I decided to get involved in patient advocacy.
A few years later, I keep commited to my desire of help and support patients. There's still a lot to do so, do we look for change in healthcare together? Let's go!

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Monday, October 5, 2015

European Reference Networks: The second chance

I remember when I first heard about the Cross-Border Healthcare Directive. By that time I thought that it was such a great opportunity to knock down barriers to access to care and also a good example of the so-called European spirit. What a naive dreamer I was! Two years after the deadline for transposition and implementation of the Directive, has just shown the true face of Europe in these times: an old cranky lady, without political will to build a more social and united Europe and member states serving only to their own interests. In the view of the "Evaluative study on the crossborder healthcare Directive" published by the European Comision, it seems obvious that the lack of information and the bureaucratic burden has turned the text into a nice declaration of intentions with no real outcomes for crossborder patients.

In the midst of this almost hopeless situation, there is still a ray of hope shaping as a second chance: European Reference Networks (ERNs).

What are ERNs? It is an European intend so the best specialists from across Europe could join their efforts to tackle complex or rare medical conditions that require highly specialised healthcare and a concentration of knowledge and resources.

So, what do ERNs bring to a patient in a practical way? Let us take an example. Let’s imagine that I’ve been diagnosed Castleman’s disease, a rare and poorly-understood inflammatory disorder that occurs in people of all ages, causes lymph node enlargement, and can result in multiple-organ dysfunction. This is an ultra-rare disease, with an incidence less than 1 in 100.000 people. It is likely that my doctor never treated a patient with the same condition or even my hospital lacks of the proper resources to treat me in a proper way. Thanks to ERNs my doctor could locate a reference center and a specialist who could either guide him to manage my disease or could recommend my transfer to that center in order to be treated adequately.

Which centers will be part of the ERNs? All those healthcare providers willing to be part of the network will be able to apply from January 2016 and they will have to meet the criteria established in the Commission Implementing Decision on setting out criteria for establishing and evaluating European Reference Networks and their Members and for facilitating the exchange of information and expertise on establishing and evaluating such Networks.

Will each disease has their own reference center? Let’s keep in mind that there are over 5.000 rare diseases, around 200 types of rare cancers as well as some other multifactorial complex diseases. The CID acknowledges that it might be difficult to reach the required minimum number of healthcare providers or Member States for some rare diseases or conditions due to a lack of expertise and it would therefore be a good idea to group healthcare providers that focus on related rare diseases or conditions in a thematic Network. Networks could also include providers of high technology services which usually require very high capital investment, such as laboratories, radiology services or nuclear medicine services.

Which criteria should a healthcare provider meet to be part of the ERNs? Admission criteria may vary based on several factors. Overall, they must meet the requirements established in the Commission Delegated Decision on setting out criteria and conditions that European Reference Networks and healthcare providers wishing to join a European Reference Network must fulfil.

When will ERNs begin to work? ERNs will start working in early 2017, as long as the centers in the network are big enough to enable the sharing of expertise and to improve access to care for patients across the Union. Otherwise, the Commission should ask member states to encourage their healthcare providers to join the proposed network.

While it is true there are still certain relevant aspects to solve, like who and when will “pay the bill”, it seems that ERNs are a more realistic approach to achieve an optimum care, an European shared-knowledge network and a better access approach. This still requires the involvement of member states and the pressure from all the stakeholders. Europe cannot afford to miss this second chance.


  1. a great summary of the ERNs - this will become much more important for those patients treated in Eastern Europe where access to drugs is severely limited !

    1. It is indeed a great chance to make a change in terms of access and better deliver of state-of-the-art medicine. We, as advocates, need to look close how things are developed, as we don't want ERNs to lay just as nice words.

      Thanks for your comment Gilly!