So, it was with this, not-insignificant, background of activities, raising the call for the global perspectives that are now required in research, that a lunch meeting took place in the parliament in Strasbourg on Tuesday 12 February 2019, the day after International Epilepsy Day. Invitations to the meeting were extended to the 67 MEPs who form the membership of the European Advocates for Epilepsy group and the event was hosted, once again, by Brian Hayes MEP. At the lunch, 12 MEPs, from Czech Republic, France, Germany, Ireland, Finland, Luxembourg, Romania and Slovenia, voiced their support for the 6 million people living with epilepsy in Europe. In turn, the MEPs heard from speakers about the continued unmet needs of people living with epilepsy and the need for improved services, novel new treatments and actions designed to educate the public about epilepsy and, thereby, reduce discrimination.

In welcoming all those present, Brian Hayes highlighted the success of the MEP group since its launch in 2011. He advised that he would be retiring from politics at the end of the current EU parliamentary term but would be happy to assist in identifying an MEP to assume the chair once the elections were completed in May. Of note, the average turnover of MEPs at the time of elections is 50%. This means that about half of the membership of the MEP group would be lost, requiring fresh efforts to rebuild it post-election. Speaking in Strasbourg, Prof Philippe Ryvlin, co-chair of Epilepsy Alliance Europe, thanked Brian Hayes and the MEP group for the support they had provided over the previous seven years. Notable achievements included the Written Declaration on Epilepsy 22/2011, that had been signed by 459 MEPs and had resulted in major funding for epilepsy research in the Framework Programme 7 (FP7). Many of the projects funded by FP7 now formed the epiXchange network. Other epilepsy projects that had received EU funding since 2011 included E-PILEPSY, the pilot European Reference Network (ERN) project; EpiCARE, an ERN focused on rare and complex epilepsies; and ESBACE, a project funded by DG Sante that surveyed epilepsy prevalence and cost burden in a number of countries. Prof Ryvlin highlighted the need for a global focus on epilepsy research if progress is to be made in identifying new and novel treatments for the 30 – 35% of people with epilepsy whose seizures currently are not controlled by existing treatments. There were new opportunities for such global research initiatives through the European Brain Research Area (EBRA).

An issue for concern was the lack of support in Europe for the WHA Resolution on Epilepsy, approved by the World Health Assembly in 2015, with report back in 2018. Few countries had addressed the recommendations of the resolution and efforts were now underway for a call to action. While support had been received from some countries including Russia, China and Brazil, there had been no support from EU Member States, despite their support for the EU Written Declaration in 2011. The argument was that epilepsy was too narrow a topic. However, the counter arguments were that epilepsy encompassed several hundred diseases; was sufficiently wide to have been selected for an EU-funded European Reference Network (ERN); 50 million people worldwide had been diagnosed with epilepsy; and it ranked second in the league of years of life lost. In her presentation, Francesca Sofia, an Italian mother of a young child with epilepsy, said that her biggest wish was for her daughter simply to be happy, adding that this was a wish shared by all parents for their children. Francesca’s daughter Bea has a complex form of epilepsy which is resistant to medication. She continues to have seizures and requires a lot of support.

“I wish my daughter simply to be happy”

Despite the hardships that life has thrown at her, Bea remains a happy loving 9-year old, who goes to school and who yearns to have friends. But the sad situation is that she has never had a friend and has never been invited to a play-date or party by classmates. Any invitation sent by Francesca to her daughters classmates for play dates or parties have always been declined by their parents. A strong indication that there is still huge misconception and stigma attached to a diagnosis of epilepsy. And if the parents are discriminatory towards Bea, this is likely to run off onto their young children.