Among neurological disorders, Epilepsy is the 4th most common in Europe, causing 1.3 million DALYs (Disability Adjusted Life Years), and 941,000 YLDs (Years of Life Lost -YLLs). 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.
In this context, Angelini Pharma activated the “Headway – A new roadmap for Brain Health: Focus Epilepsy” initiative, in collaboration with the Italian think tank The European House – Ambrosetti.
During a Digital Event held on July 21st, 2022 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.
The latter 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 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.