Commission launches reference networks to face rare and complex diseases

In an effort to combat rare diseases and improve patient accessibility, the European Commission launched  the European Reference Networks (ERNs) yesterday (28 February).

On the occasion of the 10th annual rare disease day in the EU, at UZ Leuven hospital the Commission presented its long-term plans to tackle the rare diseases phenomenon.

According to the executive estimates, 5-8,000 distinct rare diseases affect 6-8% of the EU’s population – between 27 and 36 million people.

The purpose of ERNs is to provide cross-border healthcare cooperation between European countries, with the goal of pooling knowledge from 900 specialised medical teams to treat rare and complex diseases. 24 ERNs have been established, each focused on a different specialisation.

Although the official launch date is Wednesday (1 March), the results of how well the networks are operating will not be seen for at least a year, Health and Food Safety Commissioner Vytenis Andriukaitis told euractiv.com.

The challenges

25 member states, along with Norway, have committed to being part of the reference networks. While this could mean a much larger pool of resources and knowledge to draw from when it comes to the diagnosis and treatment of rare and complex diseases, there are also the complicated logistics of 26 different health care systems attempting to work in synchronisation.

But Andriukaitis believes enough work has been done leading up to the launch to ensure these systems can work together.

“Homework was done implementing (the) cross-border healthcare directive, patient data protection directive, and patient safety issues. It was done, it was good,” he said. “(The participating countries) have more or less common framework of those legal obligations,” the EU health chief added.

“This takes a lot of time and resources,” Andriukaitis continued. “And of course, in a different way, we encourage European clinicians to cooperate, and then clinicians started to think, oh, okay, such open cross-border (cooperation) opens windows to establishing a permanent network of working together. And it was not an easy job…it was a lot of homework and it was done in a very short way, from 2014 to 2016. … I am very proud today we are (in) starting positions.”

The cost

The operating cost of the ERNs will be about €4.6 million per year, as well as an additional €3 million initially to build the infrastructure that will allow the networks to operate, said Xavier Prats Monne, director-general for Health and Food Security.

Monne emphasised that the EU would not be paying for patients’ care — this would still be left to health care systems operating within the member states.

Member states’ contribution

When asked what member states could do individually to make the ERNs operate smoothly, Andriukaitis mentioned the expansion of education efforts and possible reimbursement for care.

“Also important is that they dedicate some money to reimburse treatment or reimburse some services, especially some telemessaging services to send pictures because in some countries it is reimbursed and in some, it is not,” he said.

By increasing the scope of knowledge of health care providers, the launch of ERNs aims to reduce the isolation of both experiencing and treating rare and complex diseases.

“From my point of view, professionally, I would be very happy if I had such opportunities today compared to my opportunities 20 years ago,” said Andriukaitis.

“Can you imagine how you feel professionally when you have crystal clear information that I can ask of my colleagues in Munchen, in Karlskrona, in Helsinki, because I know them to consult me, to organize consilium online, doesn’t matter day or night? Can you imagine? … And you have the opportunity to be together, to ask advice, to treat, to teach, to learn, to have clinical status. It’s brilliant.”