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A late-March volley of support from the European Union came in the form of a prize awarded to the new European Reference Networks, designed to connect patients with rare diseases to experts across Europe.
The European Union often stands accused of doing little for health in general and less for drug research in particular – so a late-March volley of support came as a welcome surprise to some in the medicines game. The most conspicuous of these manifestations of interest was a prize awarded to the newly-established European Reference Networks, designed to connect patients with rare diseases to experts across the continent.
The prize was the top accolade in a new EU-wide competition run by the European Ombudsman, an office currently held by Emily O’Reilly, an Irish woman with an attachment to getting results and a flair for publicity. The project is “a clear example of the benefits of the EU when it comes to tackling problems that may affect only a small number of people in individual member states but who benefit collectively from EU collaboration,” she said in announcing the result. “The strength and weight of the EU is needed to foster cross-border research, alliances and scientific cooperation.”
Readers of ACT will be familiar with the ERN initiative – described by EU health commissioner Vytenis Andriukaitis at the ERN launch ceremony in early March as "a new European adventure" conducted by a band of highly specialized healthcare pioneers. The 24 approved ERNs cover 24 clinical areas and bring together more than 313 hospitals and almost 1000 healthcare units of expertise across 25 EU countries and Norway. They involve thousands of players - health professionals, patients, healthcare providers, researchers.
With unconscious irony, the title of the prize was for "good administration" – ironic to those who are aware that most of the administration in this exercise has been carried out by just one man working almost alone in the bowels of the European Commission, who over the last couple of years has cajoled and smooched and argued with national authorities, specialist medical societies, hospitals and patient groups, and even with other departments within the Commission labyrinth. Enrique Terol, a Spanish family doctor who moved into his national health ministry and was then seconded to Brussels, has labored patiently and relentlessly on a project for which the EU failed to set aside any serious funding when it blithely decided to set it up. The fact that is now up and running is a testament not to good administration, but to personal dedication.
It would be churlish in this context to expand on some of the criticisms leveled at ERNs by elements of the research community. Despite all the allusions to research in the official tributes, the project is avowedly focused more on diagnosis and treatment than on research. Some doubts about the balance were expressed by researchers during the genesis of the ERNs, and even today some leading researchers and top research institutes have made clear – so far in private – their concerns that ERNs will prove a distraction rather than a complement to research. That is a discussion to which ACT will doutbless return in due course.
ERNs weren't the only tenuously research-related beneficiaries of EU attention over recent weeks. O'Reilly also praised the European Commission itself for its work in promoting collaboration to fight antimicrobial resistance. She cited the role of the Commission's health department, DG SANTE, in bringing together the efforts of the European Medicines Agency, the European Food Safety Authority and the European Centre for Disease Prevention and Control, particularly on data collection. She said it was, "an example of how the combined expertise from different EU bodies benefits EU citizens and supports national efforts."
There were plaudits too for the research department of the Commission, DG RTD, for simplifying EU research and innovation programs with a user-friendly one-stop shop for thousands of researchers, SMEs and other organizations receiving EU research and innovation funding. "Complex systems managed previously by different DGs and services have been replaced by a single streamlined and uniform system for the whole framework program," says the commendation.
And the trend was pursued with a separate announcement from the top of the Commission of the appointment of a new advisory group on ethics in science and new technologies. Since the Juncker Commission got rid of its scientific adviser a couple of years ago, there had been fears in the science and research community of an emerging anti-science bias within the upper echelons of the Brussels administration. Some small reassurance was provided by the list of names on this new advisory group – which included among its 15 members several figures as respected in health research circles as the prominent French researcher Anne Cambon-Thomsen with her close links to France's national institute for health and medical research, Inserm, or Andreas Kurtz, head of the human pluripotent stem cell registry in Berlin, or Barbara Prainsack, Professor at the Department of Global Health & Social Medicine at King’s College London, or Nils-Eric Sahlin, Professor of Medical Ethics at Lund University.
That announcement coincided with news of new EU plans to provide research and technology organizations with more and better access to finance, particularly through the European Investment Bank. The EIB and DG RTD are making a €25 billion investment into an EU Finance for Innovators fund and the European Fund for Strategic Investments to support innovative ideas.
In the week that the EU took a new step into the unknown, with the UK formally starting its withdrawal from the EU – and threatening in the process much of the European fabric of drug discovery, regulation and delivery – all of this may sound like whistling in the dark. It is also true that – contrary to received opinion - there are many other EU exercises underway to support drug research, not least the large-scale but largely unknown Innovative Medicines Initiative. Perhaps the moral is that when you are stepping into the dark, it is no bad thing to do some whistling, and to do it very loudly.
Peter O’Donnell is a freelance journalist who specializes in European health affairs and is based in Brussels, Belgium.