Headway: data from the Report on Epilepsy Management in France presented in Paris
The Inclusion of people with epilepsy in the workplace: a factor of social development
On Thursday 25 January, Angelini Pharma and The European House Ambrosetti presented the Headway initiative at the Italian Embassy in Paris, bringing to light significant data on epilepsy in France, with a focus on the inclusion of people with epilepsy in the workplace.
Besides being a relatively common pathology – more than 100 people a day in France experience a first epileptic seizure – epilepsy is often seen as a disease that should be hidden, for example in fear of losing the job. This, in fact, is a concrete concern: 47% of individuals with epilepsy declare that their condition affects their work performance, one of the highest percentages in Europe. Stigma and discrimination aggravate the situation, leading 20% of workers with epilepsy struggle to maintain a professional position.
The roundtable promoted within the Headway initiative, moderated by Prof. Fabrice Bartolomei, Head of the Department of Epileptology and Cerebral Rhythmology at Marseille University Hospital, involved experts, associations and institutional representatives, highlighting the unique challenges that people with epilepsy face on a daily basis and especially in the world of work, especially with certain professions, including law enforcement and the armed forces, firefighters, merchant navy, pilots and air traffic controllers, which turn out to be, in fact, legally inaccessible.
Overcoming the obstacles of stigma and discrimination in the workplace should become not only one of the most pressing challenges for the epilepsy community but also a good opportunity to champion inclusion as a driver of societal development.
This roundtable provides an opportunity to respond to a need of the public opinion, as 89% of French people believe that it is necessary to increase employers' awareness of epilepsy.
Addressing the growing burden of Epilepsy on Brain Health in France
In France, neurological diseases, including epilepsy, multiple sclerosis, Parkinson's disease, and Alzheimer’s disease, rank as the third leading cause of death in the country after cardiovascular diseases and cancers. The number of people living with epilepsy, counting almost 700.000 cases in France, is increasing steadily. This escalating trend places a substantial burden on both the healthcare system and the economy (about 200,000 patients do not respond to any treatment - at an annual cost of 3.5 billion euros*), requiring global and strategic interventions. As for the employability of people with epilepsy, only 50-75% have a job and unemployment is 3 times higher than the general population*.
Taking action on epilepsy not only promises an enhanced quality of life for patients through early diagnoses and improved treatment pathways but can also increase awareness of other neurological disorders. Strengthening care services and support for patients through the advancement of know-how and care pathways would therefore benefit also other disorders.
In light of these challenges, under the Headway initiative, a European roadshow of events and roundtables that started from 2023, has brought together leading epilepsy experts, representatives of patient associations and institutional representatives of different nationalities to foster dialogue and collaboration, calling for policy and treatment advances in the field of epilepsy and brain health broadly.
*Le Livre Blanc de l'épilepsie par Épilepsie France - LFCE: Ligue Française contre l'Epilepsie (epilepsie-info.fr)