Research priorities and areas of intervention for epilepsy care in Europe – EURACTIV.com

“Headway – A new roadmap in Brain Health: Focus Epilepsy”, produced by the Think Tank The European House – Ambrosetti in collaboration with Angelini Pharma, was designed and launched in 2022 with the aim of creating a multidisciplinary platform for strategic thinking, d analysis, dialogue and comparison between different European experiences in the care of people with epilepsy. The results of the initiative were presented last week, on the eve of this year’s World Brain Day dedicated to “brain health for all”.

Dr. Rafal Kaminski is the Scientific Director of Angelini Pharma.

Today around 180 million Europeans live with a brain disorder, and it is estimated that 1 in 3 people will have a neurological and/or psychiatric disorder at some point in their life. The COVID-19 pandemic has highlighted the devastating effect this “silent” pandemic can have on our societies.

Estimates show that brain disorders account for up to 45% of the total health care budget – a number that is expected to increase further as Europe’s population is aging and becoming more susceptible to brain disorders. It is therefore essential to act now, in order to increase current efforts and make brain health a targeted strategic priority for health and society.

Among brain disorders, epilepsy is the 4th most common in Europecausing more 940,000 years lived with disability. The incidence of the disease is often underestimated given the complexity of symptom manifestation and underlying causes. Nevertheless, estimates point to nearly 400,000 new cases in Europe each year, for a total of 6 million people living with epilepsy.

Epilepsy and its seizures can develop in anyone at any age, but more commonly in children and the elderly. The risk of sudden death in people with epilepsy is up to 3 times higher than for the general populationwhile life expectancy is reduced by 2 to 10 years.

It is important to fight against epilepsy and to support people with epilepsy because of its significant societal burden (to which social exclusion and stigmatization largely contribute) and economic (equal to approximately 20 billion euros per year for Europe alone). The COVID-19 pandemic has exacerbated some of these issues: disruption of services, difficult access to medications and increased mental health issues have added to the already significant situation. burden of people with epilepsy.

Over the past decade, global health policy has recognized epilepsy as a primary cause of disability. In 2009, the WHO defined Epilepsy as a social diseasewhile in 2020 the 73rd The World Health Assembly has identified epilepsy as one of the most common neurological disordersadopting a resolution aimed at developing Global Intersectoral Action Plan on Epilepsy and Other Neurological Disorders (IGAP) 2022-2031. First discussed as a draft at the 150e session of the WHO Executive Board in January 2022, in May 2022, the document was unanimously approved.

In the European context, the report compiled by The European House – Ambrosetti offers some interesting key findings on the state of the art in epilepsy, highlighting a great variability in the availability, accessibility and quality of care (the treatment gap between European countries is considerable and equal to 40% of people with epilepsy and up to 90% in some areas), the important role that marginalization and stigma continue to play in the isolation and restriction of people with epilepsy (51% of adults feel stigmatized) whether in school environments (between 25 and 50% of children with epilepsy have some degree of difficulty at school), work (unemployment is 2 to 3 times higher among people with epilepsy compared to the general population) or in society in general (more than 1 in 5 people are afraid to go out because of the possibility of seizures).

The report also offers a broader perspective on various European experiences, highlighting the need for common guidelines on minimum standards of careone more holistic approachand harmonized programs (i.e. ~10% of countries in Europe do not have epilepsy specialists). In general, there is still a clear unconscious on epilepsy in Europe (in some countries epilepsy is not recognized as a brain disorder, while very few have national plans to manage the disorder).

A low level of knowledge and poor understanding can contribute to poor preparation or discrimination. For these reasons, the report outlines priority areas of intervention for key stakeholders, including healthcare providers, researchers, patient organizations and policy makers, calling for action to ensure not only a global and integrated approach but also to define a common roadmap to meet people’s needs.

A step in this roadmap is to formulate, pursue and defend epilepsy research priorities. Continued research is essential to further expand the options available, especially for people who do not respond to first-line treatments, and to reduce side effects. For this reason, improving the care of epileptic patients also means overcome the obstacles including lack of consistent epidemiological data, complicated regulatory processes, insufficient funding, and cultural stigma.

Fully aware of these unmet needs, Angelini Pharma is committed to providing patients and healthcare professionals new and innovative solutions to improve the care of epileptic patients. In this process, pharmaceutical companies can rely on two key tools. On the one hand, the possibility of act collaboratively and in partnership with other key players, public and private, by pooling specific skills and knowledge.

On the other hand, by exploiting the enormous potential of data gathering, systematization and sharing to further improve its solutions by making them ever more personalized, precise and efficient.

Initiatives like this represent a fundamental step towards creating a multidisciplinary and inter-European platform to stimulate dialogue and knowledge sharing the most pressing issues in healthcare, but also in workplaces, schools and society to reduce the burden of epilepsy.

Headway is committed to contributing to this objective, work in continuity and in coherence with the programs and strategies of Governments and International Organizationsfrom the Global Intersectoral Plan of Action on Epilepsy and Other Neurological Disorders (IGAP), approved in May 2022. The proximity to the world brain day makes this initiative one of the steps on our journey towards improving the quality of life of people living with brain health issues across Europe.