The Role of Patients Advocacy Groups to Reduce Headache Pain in the European Union: from the Italian Case History to the European Migraine Action Plan

Abstract

Mariano Votta, Alessia Squillace, Ginevra Varallo and Aya Hadj Ameur

From the “patients’ right to avoid unnecessary suffering and pain” to the “Charter of Rights of the Cephalalgic Patient”, over the years the role of the civic & patients’ organisations to reduce headache pain in the European Union is increased: this research article explores the experiences of individuals affected by migraines and headaches, highlighting challenges, rights, and the need for improved healthcare support. Based on an extensive civic survey conducted at the national level by the Italian NGO Cittadinanzattiva, the study reveals the profound impact of headaches on people's lives, emphasising the lack of disability recognition and difficulties in accessing quality care. Through compelling testimonies, the article underscores the emotional, psychological, and physical burden of these conditions, and describes an innovative artificial intelligence-based tool called “EMI”.

Together with many actors, since decades Cittadinanzattiva has been engaged in the fight against chronic pain for decades, both at the national and European levels. In this regard, what attention will the new MEPs (Members of the European Parliament) and the new leadership of the EU Commission DG Santé (Directorate-General for Health and Food Safety) dedicate to this issue in the wake of the upcoming European elections in 2024? From various quarters, there is a call for a European Migraine Action Plan aimed at finally placing this issue on the agenda of European political institutions, promoting a more inclusive and patient-centered vision within the European healthcare landscape, where the pain of those suffering from migraines and headaches is no longer invisible or unheard.

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