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 (6-8% of the population).
Social exclusion and stigma largely contribute to the global burden of Epilepsy. Moreover, the COVID-19 pandemic made the management of the disease more difficult. Nonetheless, very few European countries have national plans for managing the disorder. During the Digital Event, organized yesterday by The European House - Ambrosetti in collaboration with Angelini Pharma, the results of “Headway – A new roadmap in Brain Health: Focus Epilesy” were presented.
The report highlights how the quality of epilepsy care is often lacking across Europe with up to 40% of people with epilepsy remaining untreated (up to 90% in some areas). Stigma and marginalization, furthermore, continue to play a significant role in isolating and restricting people with epilepsy whether in school settings, at work or in society in general. In addition, barriers for epilepsy research include lack of consistent epidemiological data, complicated regulatory processes, insufficient funding, and cultural stigma.
“Epilepsy is recognized as one of the most common neurological disorders, however, thanks to research like this we now also know the health impact of neurological diseases overall has been underestimated for years,” said Pierluigi Antonelli, Chief Executive Officer Angelini Pharma. “This report is an important milestone and brings to light that there is still a clear lack of awareness about epilepsy across Europe.”
Stigma associated with epilepsy has been identified by the report as a critical issue facing people living with the condition, contributing to poor physical and mental health, with 51% of adults surveyed feeling stigmatized, 18% of which highly so. Stigma can delay patients seeking appropriate health care, impact access to care, the financing of healthcare and affect the availability of treatment options.
More than one in five people with epilepsy isolate themselves from society because of anxiety about possible adverse reactions to public seizures that might lead to accidents. As we are living in the 3rd summer of the the COVID-19 pandemic, the magnitude of disruptions and additional stresses to the epilepsy community are clearly noticeable, as the report findings show. The restriction of clinical care has had a significant impact, with a 75% reduction in the number of EEGs during the crisis compared to pre-COVID times in Italy alone. The report demonstrated that 30% of patients suspended hospital treatments. A lower social support as well as social isolation may continue to reduce treatment adherence as well as worsen seizure control.
“Misdiagnosis affects 20–30% of patients with epilepsy and can delay effective management of this condition, with long-term consequences for the health and wellbeing of patients and their families,” said Philippe Ryvlin, Head of the Department of Clinical Neurosciences, Lausanne University Hospital. “This emphasizes the crucial importance of pan-European collaboration in training and research to advance the standard of care for people with epilepsy.”
“Epilepsy is still highly misunderstood in many countries. 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 vital step,” said Daniela Bianco, Partner and Head of the Healthcare Practice of The European House – Ambrosetti. “Our continued collaboration with Angelini Pharma on the Headway initiatives is critical to advancing our knowledge and developing a new roadmap for brain health in Europe. 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!”