#EAPM: DG SANTE – A force for good for Europe’s citizens

“Reports of my death are greatly exaggerated,” is a popular misquotation of a Mark Twain remark, but, either way, let us all hope that reports of the possible demise of the European Commission’s DG SANTE (Health and Food Safety) are equally exaggerated, writes European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan.

EAPM has undertaken a great deal of work and cooperation with this directorate-general (as well as others) and, while many multi-stakeholders outside of the institutions often become frustrated in certain cases with departments of the Commission, DG SANTE has achieved a great deal for the benefit of Europe’s patients.

Currently led by Commissioner Vytenis Andriukaitis, DG SANTE – ‘santé’ means ‘health’ in French, in case you didn’t know – has the goal of making Europe a healthier, safer place, where citizens can be confident that their interests are protected.

The directorate-general says: “A zero-risk society may not be possible but we are doing as much as we can to reduce and manage risks for our citizens.”

The DG’s aims include steering public health across the European Union, ensuring health security, improving health systems, risk assessments, fostering good health and taking action against diseases.

None of this is easy when embedded in the EU’s Treaties is the fact that member states have individual competence for their own health-care systems.

Yet DG SANTE (in its various guises) has taken effective action in the areas of smoking and clinical trials, for example.

Indeed, when EAPM’s co-chair (one-time Attorney General of Ireland), David Byrne, was European Commissioner for Health and Consumer Affairs from 1999-2004, he was a major driving force behind tobacco control legislation, including directives banning tobacco advertising and regulating tobacco products.

David worked hard at the highest level to lay the foundations for getting rid of his country’s (and Europe’s) culture of smoking in pubs, restaurants and more. Smoking in workplaces in the Emerald Isle was banned in March 2004, and this made Ireland the first country in the world to institute an outright ban in that regard.

Back then, that was heady stuff, and the work of DG SANTE has continued down the intervening years. This includes, earlier this year, the launch of European Reference Networks (ERNs).

On 1 March 2017 the first 24 European Reference Networks officially started their activities. Within these ERNs, more than 900 medical teams joined forces to treat patients with rare or low prevalence complex diseases or conditions.

ERNs are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources.

The ERNs were set up under the 2011 Directive on patients’ rights in cross-border health care. This Directive also (theoretically) makes it easier for patients to access information on healthcare and thus to increase their treatment options, although it hasn’t benefitted from full take up across all member states yet, and reimbursement issues often arise.

The European Commission created the framework for ERNs and provides grants and technical networking facilities to support network coordinators. The driving forces behind the ERNs are healthcare providers and national health authorities, who show trust, take ownership and have the most active role in the development and functioning of the networks.

This is a great move forward and DG SANTE, and the Commission as a whole, should be congratulated.

Lest we forget, between 6,000 and 8,000 rare diseases affect an estimated 30 million people in the EU. An unfortunate feature of rare diseases and complex conditions is the scarcity and fragmentation of specialist knowledge, which is often not available in the patient’s region or country. Many patients therefore do not find a satisfactory explanation for their symptoms or the necessary knowledge on treatment options.

Co-operation at EU level makes a real difference to rare diseases patients and their families, as well as the health professionals helping them. No country alone has the knowledge and capacity to treat all types of rare, complex and low-prevalence conditions and diseases, but by co-operating and exchanging life-saving knowledge at European level through ERNs, patients across the EU will hopefully have access to the best expertise available.

As suggested earlier, EAPM has been in continuous dialogue with DG SANTE down the years, and recently sent a letter, signed by cross-party MEPs, Commissioner Andriukaitis and his counterpart Andrus Ansip (Digital Single Market) commissioner.

This calls for a Data Task Force to develop further the Commission’s digital strategy in health, and DG SANTE would be a key player in any such initiative.

On top of this, EAPM has had countless meetings with representatives of the DG and several high-level officials and experts have given presentations at various Alliance Presidential Conferences down the years.

The Alliance therefore seriously hopes that DG SANTE will remain, as its separate mandate allows it to operate specifically in certain areas, albeit under a broad umbrella.


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Category: A Frontpage, EU, European Alliance for Personalised Medicine, Health, Personalised medicine

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