22 July 2022
In Europe, around 180 million people live with a brain disorder – neurological and mental alike. The COVID-19 pandemic has underscored the devastating impacts that this other “silent” pandemic can have in our societies. Estimations are that brain disorders account for up to 45% of total healthcare budgets and this is expected to increase further as Europe’s population ages and becomes more susceptible to brain disorders. It is therefore fundamental to act today, in order to increase current efforts and turn brain health into a focused strategic health and societal priority.
This is where we started yesterday during our Digital Event, “Headway – A new roadmap in Brain Health: Focus Epilepsy” aimed at presenting the results of the initiative realized by the Think Tank The European House – Ambrosetti in collaboration with Angelini Pharma, that was conceived and launched in 2022 with the aim of creating a multidisciplinary platform for strategic reflection, analysis, dialogue, and comparison between various European experiences in the management of individuals with Epilepsy.
The initiative keeps the trajectory and works in continuity and coherence with programs, activities, and strategies of Governments and International Organizations (such as the WHO) and scientific societies/patient associations/advocacy groups (among others, ILAE, IBE, and Epilepsy Alliance Europe), as well as of European Institutions, to contribute to reducing the burden of Epilepsy in Europe.
Among neurological disorders, Epilepsy is the 4th most common in Europe, causing 1.3 million DALYs and 941,000 YLDs. The incidence of the disease is often underestimated given the complexity of symptom manifestation and underlying causes. Nonetheless, estimates report nearly 400,000 new cases in Europe each year, for a total of 6 million individuals living with Epilepsy.
It is important to tackle Epilepsy and support individuals with Epilepsy due to its important social and economic burden (~20 billion euro annually). Despite this, very few European countries have national plans for managing the disorder. The COVID-19 pandemic has exasperated some of these issues: disruption of services, difficult access to treatments and increased mental health issues have added to the burden of individuals with Epilepsy.
In the past decade, global health policy has recognized Epilepsy as a leading cause of disability. In 2009, the WHO defined Epilepsy as a social disease, while in 2020 the 73rd World Health Assembly identified Epilepsy as one of the most common neurological disorders, adopting a resolution aimed at developing the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (IGAP) 2022-2031. First discussed as a draft at the 150th session of the WHO Executive Board in January 2022, in May 2022 the document has been unanimously approved.
In the European context, the burden of Epilepsy is significant, yet access to quality care is often lacking, especially in some countries: even though approximately 70% of people with Epilepsy are likely to respond to treatment, around 40% across Europe - and up to 90% in some areas - are missing out (treatment gap), emphasizing the need for harmonization programs and European guidelines outlining minimum standards of care. Differences in access to treatment between European countries are not surprising, also given the great variability in terms of national income, life expectancy, and healthcare systems organization.
This preoccupying situation highlights a serious underlying issue, impacting also on the experience of people with Epilepsy and their families across all sectors:
- Within school settings, there is a complex interaction between learning ability and Epilepsy, which can result in a greater risk of children with Epilepsy being misunderstood and excluded: it has been estimated that between 25-50% of children with Epilepsy have some degree of educational difficulty.
- In workplaces, both under- and unemployment are more common in people with Epilepsy: studies have shown that people with Epilepsy have significant difficulties in obtaining jobs (in Europe, unemployment is 2-3 times higher among people with Epilepsy vs. general population). Nevertheless, when Epilepsy is well controlled, it has been proven that it has much less impact on employment rates and history.
- In general, people with Epilepsy often experience social withdrawal and isolation, which is frequently the result of anxiety about possible adverse reactions of others in case a seizure should occur in a public area.
Creating a multidisciplinary, inter-European platform to stimulate dialogue and knowledge sharing around the most prominent issues in the healthcare sector, but also in workplaces, schools and society in general with the objective of contributing to reducing the burden of disease in Europe is a crucial step. With the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) having been approved earlier this year, now is the time for us to act a start defining a new roadmap for Epilepsy!
For more information on the initiative and to download the report please visit: https://eventi.ambrosetti.eu/headway-epilepsy/