Epilepsy must be prioritised by the EU – Hayes

Brian Hayes MEP speech to the 32nd International Epilepsy Congress – Barcelona Saturday 2nd September

“As President of the MEP Epilepsy Advocates Group in the European Parliament, it is a great pleasure to address you today. I work with politicians from all over Europe who have taken a specific interest in epilepsy and are willing to help.

“What many people fail to appreciate is that the European Parliament is the democratically elected voice of over 500 million citizens in Europe. Increasingly the Parliament is not only influencing, but also setting the agenda on issues that deeply affect citizens and can dramatically improve living conditions for the people we represent.

“As advocates for people with this condition, we want to play a role, along with other EU Institutions, in highlighting and campaigning for at least 6 million Europeans and their families. We say that on every street in Europe someone is connected to this condition. And while health systems and income levels across the EU vary from one Member State to the next, we all have a responsibility to do what we can to help people who live with epilepsy. The Parliament is here for the long-term in demanding that all health authorities across the EU stand up for people with epilepsy and respond to their needs.

“In Europe it is estimated that we see 400,000 new cases of epilepsy each year. 100,000 children and adolescents diagnosed with epilepsy each year. And about one half of those patients with epilepsy feel stigmatised.

“Across Europe, while we have seen real improvements for those who have to live with this condition, but that improvement is not universal. In some European countries epilepsy is not a recognised brain disorder leaving many people who suffer with the condition untreated and ignored. Europe, as is the case in many regions of the world, has a long way to go before epilepsy is properlyrecognised.

“The challenge of epilepsy is of course a global challenge. It is estimated that close to 65 million people globally live with epilepsy – many of them living in regions where the condition is neither properly recognised nor treated appropriately. Our responsibility in the EU must be about partnering with health authorities across the world to help and campaign for people who have the condition, to improve outcomes in their lives and to coordinate research. Our responsibility in the EU is not therefore just to focus on our region, but to help coordinate and advocate globally. We fully understand that Europe must be an international agent for change.

“In 2011 a Written Declaration on epilepsy was passed in the European Parliament with the support of 459 MEPs. That declaration set out a clear intent on the part of the European Parliament for Europe and all EU member states to do more on epilepsy and to do more together. It calls for more resources to be devoted to epilepsy research and to combatting the stigma attached to epilepsy. The majority in favour of the declaration was, at the time, the biggest ever majority in terms of parliamentary support for a Written Declaration.

“It’s time now for the European Commission to put this Written Declaration into action. As a brain disorder, epilepsy is well down the list of priorities. But we need that to change given the amount of people that epilepsy affects in Europe. The Commission and Member States need to prioritise epilepsy and put more resources into research and medicines to address the epilepsy treatment gap. Horizon 2020 provides a great opportunity to push the research agenda. We can also work with other parts of the world and tackle this disease as a global problem. Only then can we truly make the lives of people with epilepsy better.”