18/07/2023

Empowerment

6 minutes

Headway – A new roadmap in Brain Health, Focus Epilepsy

Research presented in Rome by Angelini Pharma and The European House - Ambrosetti highlights that almost 40% of people with epilepsy receive inadequate treatment.

Research presented in Rome by Angelini Pharma and The European House - Ambrosetti highlights that almost 40% of people with epilepsy receive inadequate treatment.

The second edition of “Headway – A new roadmap in Brain Health, Focus Epilepsy” report was presented the 17th of July in Rome featuring a diverse panel of epilepsy experts from academia, advocacy groups, and the broader healthcare sector and highlights an ongoing treatment gap on epilepsy, revealing significant disparities in access to care between countries.

This report was published by the esteemed think tank, The European House - Ambrosetti, in collaboration with Angelini Pharma as part of a larger initiative called "Headway – A new roadmap for Brain Health: Focus Epilepsy" which was originally launched in 2017.

The overarching goal of this initiative is to establish an expert panel that facilitates strategic reflection, analysis, dialogue, and comparison of different European experiences in managing epilepsy and promoting research.

 

Headway - A new roadmap in Brain Health, Focus Epilepsy – highlight

According to the report, there are still significant disparities in access to care among countries. Despite the fact that approximately 70% of people with epilepsy are likely to respond well to treatment, about 40% of individuals across Europe—rising to as high as 90% in certain regions—still do not receive optimal care to manage their seizures.

Data from 2023 reveals that the majority of European countries (88%) claim to have legislation in place for epilepsy. However, some countries do not officially recognize epilepsy as a brain disorder. Furthermore, while around half of European countries have established epilepsy surgery programs, one in ten lacks specialized healthcare professionals trained specifically in epilepsy. Additionally, approximately 46% of countries include epilepsy in their national annual reporting system, but more than 30% of countries do not provide neuropsychological or rehabilitation services for individuals affected by the condition. This lack of support contributes to behavioral issues, underachievement at school, underemployment, financial difficulties, and mental disorders.

These significant treatment gaps are a result of various factors, including reduced capacity in healthcare systems, unequal distribution of resources, and a low priority assigned to epilepsy care. Staff shortages, limited access to epilepsy and seizure medications, and a lack of knowledgeable and confident workers across relevant sectors such as welfare and education also worsen the situation. Misconceptions and stigma surrounding epilepsy further compound the challenges.

Overall, epilepsy has a substantial impact in Europe. It accounts for 1.3 million Disability Adjusted Life Years (DALYs) and 941,000 Years of Life Lost (YLLs), leading to poor physical and mental health, social exclusion, and stigma. The economic burden for European countries is estimated to be as high as 20 billion euros annually, encompassing direct healthcare costs, direct non-medical costs, and indirect costs. Additionally, a study involving over 5,000 adults from 15 European countries found that more than half (51%) of individuals with epilepsy experience stigmatization, with 18% reporting high levels of stigma.

A recent survey conducted by the International Bureau for Epilepsy (IBE) highlights the barriers faced by people with epilepsy, including social isolation from the community (reported by 78% of respondents), restrictions at school (65%), and discrimination by family and relatives (45%).

The impact of epilepsy extends to various aspects of individuals' lives, significantly interfering with their daily routines. Another recent study reveals that nearly 40% of people with epilepsy rate their health as either "poor" or "fair," with the majority feeling somewhat limited in performing moderate physical activities, work, daily activities, and participating in social interactions. The burden is particularly heavy on their ability to drive (20% feel "extremely impacted," and 18% feel "impacted"), their general mood (14% and 23%), and their self-esteem levels (13% and 22%).

Conclusions

The second edition of “Headway – A new roadmap in Brain Health, Focus Epilepsy” report emphasizes the need for further research on the burden of epilepsy, along with the harmonization of policies and guidelines that would facilitate the implementation across different countries of the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) approved by the World Health Organization.

The IGAP defines two global targets specific to epilepsy to be achieved in all member states by 2031:

  • all countries will have increased service coverage for Epilepsy by 50% with respect to the coverage levels in 2021;
  • 80% of countries will have developed or updated their legislation with a view to promoting and protecting the human rights of people with epilepsy.

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