Geneva, Switzerland – In a significant move set to reshape global policy for neurological conditions, the International Bureau for Epilepsy (IBE) officially launched its groundbreaking Policy Advocacy Report at the 79th World Health Assembly (WHA) in Geneva. This pivotal document, meticulously crafted to integrate the direct voices, pressing priorities, and profound lived experiences of people with epilepsy, is poised to inject essential human-centric perspectives into the highest echelons of international health discussions.
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The report emerges as a direct response to the urgent need for global frameworks to translate into tangible, positive change on the ground. It serves as a critical bridge between high-level policy commitments and the daily realities faced by millions living with epilepsy worldwide, aiming to ensure that global health strategies are not only comprehensive but also deeply empathetic and effective. Its release marks a pivotal moment for advocacy, providing an evidence-based roadmap for governments, healthcare leaders, researchers, and civil society organizations striving to enhance the quality of life for individuals affected by this often-misunderstood condition.
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Catalyzing Change: The Genesis of a Global Movement
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The genesis of this comprehensive report lies in the findings of IBE’s landmark Global Epilepsy Needs Study (GENS). This ambitious research initiative systematically gathered extensive data, transforming intricate insights from lived experiences and robust global evidence into a series of practical, actionable recommendations. The overarching objective of these recommendations is to fortify and accelerate the implementation of the World Health Organization’s (WHO) Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) for the period 2022–2031. IGAP itself represents a monumental step by the global health community to address the immense burden of neurological conditions, and IBE’s report is designed to be a crucial tool in operationalizing its ambitious goals.
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The official launch event, a high-level side gathering, took place at the prestigious WHO Headquarters, underscoring the report’s strategic importance within the global health agenda. This impactful event was co-organised through a collaborative effort by One Neurology – a collective voice for neurological health – and key WHO Non-State Actors. This powerful consortium included the IBE itself, alongside the Multiple Sclerosis International Federation (MSIF), and Alzheimer’s Disease International (ADI), demonstrating a unified front in advocating for neurological health. The invaluable support of the Italian Ministry of Health further facilitated the event, highlighting a growing recognition among national governments of the imperative to address neurological disorders comprehensively.
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The 79th World Health Assembly provided an unparalleled platform for this launch. As the decision-making body of the WHO, the WHA brings together delegates from all WHO Member States, providing a unique forum for discussions on global health policies and priorities. Launching the report here ensured maximum visibility and direct engagement with the policymakers, health ministers, and international delegates who possess the power to enact widespread change. The event not only showcased the report but also fostered critical dialogue, establishing epilepsy as a central issue within the broader spectrum of global public health.
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Voices from the Frontlines: The Global Epilepsy Needs Study (GENS)
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At the heart of the Policy Advocacy Report lies the Global Epilepsy Needs Study (GENS), an undertaking of unprecedented scale and depth. Donna Walsh, CEO of the International Bureau for Epilepsy, articulated the profound motivation behind GENS during the launch event. She emphasized the critical importance of ensuring that high-level global frameworks do not remain abstract concepts but instead translate into meaningful and tangible improvements in the daily lives of individuals. "There is no point creating global frameworks unless they really address what matters most to those people living with neurological conditions across the world," Ms. Walsh powerfully stated, echoing a sentiment of urgency and accountability.
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Ms. Walsh explained that the GENS study was conceived to look beyond the clinical manifestation of seizures alone. While seizure control is undoubtedly a primary goal in epilepsy management, the study sought to delve deeper, aiming to comprehensively understand the broader, multifaceted realities confronting people with epilepsy across diverse cultural, social, and economic landscapes worldwide. This holistic approach recognized that epilepsy impacts far more than just neurological function; it permeates every aspect of an individual’s existence.
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The methodology employed for GENS was rigorous and inclusive, designed to capture both broad trends and nuanced individual experiences. The study successfully gathered nearly 5,300 survey responses from a wide array of countries, providing a statistically significant global snapshot. Complementing these quantitative insights, 75 in-depth interviews were conducted, offering rich qualitative data that illuminated the personal stories, challenges, and triumphs of individuals living with epilepsy. These interviews provided the crucial human element, giving voice to statistics and painting a vivid picture of the real-world implications of the condition.
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The areas explored within GENS were deliberately expansive, encompassing the full spectrum of life affected by epilepsy:
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- Healthcare: Beyond access to medication, this domain investigated the availability of specialized epilepsy care, diagnostic delays, the quality of care received, and the integration of mental health support. Many participants highlighted disparities in access to neurologists, affordable anti-seizure medications, and comprehensive treatment plans, particularly in low-resource settings.
- Education: The study examined the challenges faced by children and young adults with epilepsy in educational settings, including discrimination, lack of understanding from teachers and peers, insufficient support for academic adjustments, and the stigma that can lead to isolation or even exclusion. The need for inclusive educational policies and seizure first aid training for school staff emerged as a clear priority.
- Employment: Participants shared experiences of job discrimination, difficulties in securing and maintaining employment due to perceived limitations or lack of workplace accommodations, and the financial insecurity that often accompanies epilepsy. The report emphasizes the economic impact of epilepsy and the need for policies that promote fair employment practices and support vocational rehabilitation.
- Transportation: Issues such as restrictions on driving licenses, accessibility of public transport, and the fear of seizures in public spaces were explored. These challenges significantly impact independence and social participation, highlighting the need for balanced policies that ensure safety without unduly limiting mobility.
- Safety: This domain addressed the physical risks associated with seizures, the importance of public awareness regarding seizure first aid, and the need for safe living and working environments. The study underscored how a lack of public understanding can lead to inappropriate responses during a seizure, sometimes causing more harm than the seizure itself.
- Social Inclusion: Perhaps one of the most pervasive themes, social inclusion probed issues of stigma, isolation, discrimination in social settings, and the impact on relationships and community participation. Many respondents spoke of the hidden burden of epilepsy, where fear of judgment or misunderstanding prevents them from fully engaging in social life.
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A central, unifying theme that resonated powerfully throughout the launch event and is meticulously detailed in the report is the persistent and often disheartening "gap between policy commitments and everyday reality." This disconnect highlights a critical flaw in current global health governance: policies, however well-intentioned, often fail to translate into tangible improvements at the grassroots level unless they are informed by the genuine experiences of those they are intended to serve. The GENS study provides the evidence base to confront this gap directly, offering practical solutions rooted in real-world challenges.
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A Holistic Vision: Epilepsy as a Human Rights and Development Issue
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Crucially, the Policy Advocacy Report boldly positions epilepsy not merely as a medical or health issue, but expands its scope to encompass fundamental human rights, social inclusion, and sustainable development. This reframing is vital, as it compels policymakers to view epilepsy through a broader lens, recognizing its profound implications for individuals’ dignity, equality, and their ability to contribute fully to society.
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- Human Rights: The report highlights how stigma and discrimination against people with epilepsy infringe upon their basic human rights, including the right to health, education, employment, and non-discrimination. It calls for legal and policy frameworks that explicitly protect these rights and challenge societal prejudices.
- Social Inclusion: By addressing the barriers to social participation—from public misunderstanding to lack of accessible support systems—the report advocates for societies where people with epilepsy are fully integrated and valued, free from fear of judgment or exclusion.
- Sustainable Development: The economic burden of epilepsy, including lost productivity, healthcare costs, and the impact on families, directly hinders sustainable development goals. By improving care and inclusion, societies can unlock the full potential of individuals with epilepsy, contributing to economic growth and societal well-being. This perspective aligns epilepsy advocacy with the broader United Nations Sustainable Development Goals (SDGs), particularly those related to health, education, decent work, and reducing inequalities.
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A Roadmap for Action: Ten Global Policy Priorities
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The heart of the Policy Advocacy Report lies in its meticulously outlined ten global policy priorities, accompanied by detailed, domain-specific recommendations. These priorities serve as a comprehensive roadmap for governments, healthcare systems, and civil society, guiding efforts to implement IGAP effectively and create a world where epilepsy is understood, treated, and no longer a barrier to a full life.
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- Strengthening Human Rights-Based Frameworks: This priority calls for the enactment and enforcement of laws and policies that explicitly protect the rights of people with epilepsy, combat discrimination, and promote equity. It involves legislative reform, public awareness campaigns to challenge stigma, and legal aid for individuals whose rights have been violated.
- Increasing Awareness of Epilepsy and Seizure First Aid: Education is key to dismantling stigma. This priority emphasizes widespread public education campaigns to dispel myths about epilepsy, promote accurate understanding of the condition, and crucially, train the public in appropriate seizure first aid techniques. Knowing how to safely assist someone during a seizure can prevent injury and reduce fear.
- Developing National Epilepsy Plans and Programmes: The report advocates for every country to develop and adequately fund a national strategy for epilepsy. These plans should integrate prevention, diagnosis, treatment, and social support services, ensuring a coordinated and comprehensive approach to epilepsy care within national health systems.
- Improving Access to Healthcare and Medicines: This fundamental priority addresses the critical need for affordable, available, and accessible anti-seizure medications and diagnostic tools. It also calls for strengthening primary healthcare systems to manage epilepsy, particularly in rural and underserved areas, and increasing the number of trained epilepsy specialists.
- Providing Integrated Holistic Care: Beyond medication, this priority stresses the importance of comprehensive care that addresses the physical, psychological, and social aspects of living with epilepsy. This includes mental health support, neurological rehabilitation, counseling, and peer support networks to enhance overall well-being.
- Driving Research and Innovation: Continued investment in research is vital for discovering new treatments, improving diagnostic methods, understanding the causes of epilepsy, and ultimately finding a cure. This priority encourages international collaboration and funding for cutting-edge research.
- Creating Epilepsy-Friendly Environments: This involves making schools, workplaces, public spaces, and communities physically and socially inclusive for people with epilepsy. It includes promoting understanding, implementing reasonable accommodations, and fostering a culture of acceptance and support.
- Ensuring Meaningful Lived Experience Involvement: Embodying the principle of "nothing about us without us," this priority mandates that people with epilepsy and their caregivers be actively involved in the design, implementation, and evaluation of policies and services that affect their lives. Their unique insights are invaluable for effective policy-making.
- Supporting Patient Organisations: Patient organizations play a crucial role in advocacy, providing peer support, disseminating information, and delivering services. This priority calls for governments and international bodies to recognize and adequately support these organizations, enabling them to amplify the voices of their communities.
- Monitoring and Evaluation: The report also implicitly underscores the need for robust mechanisms to monitor the implementation of these priorities and evaluate their impact, ensuring accountability and continuous improvement.
Towards a Future of Inclusivity: Implications and the Road Ahead
Ms. Walsh concluded her address by underscoring the enduring purpose of the report: to serve as an indispensable implementation and advocacy tool for the foreseeable future. "We hope that this will be a critical evidence base to inform policymaking and decision-making," she stated, emphasizing its role as a data-driven resource. "Particularly when it comes to IGAP implementation globally."
The GENS Policy Advocacy Report is not merely a document; it is intended to be a dynamic roadmap, a living guide for a diverse array of stakeholders. It empowers governments to develop evidence-based national plans, provides healthcare and research leaders with clear priorities for investment and innovation, and equips advocates and civil society organizations with robust data to champion the rights and needs of people affected by epilepsy worldwide.
For People with Epilepsy: The successful implementation of the report’s recommendations promises a future with improved access to accurate diagnosis and effective treatment, reduced stigma and discrimination, greater opportunities for education and employment, and ultimately, a better quality of life. It offers hope that their voices will be heard and their experiences will directly shape the policies that govern their lives.
For Policymakers and Governments: The report offers a compelling rationale for investment in epilepsy care and support, backed by global evidence and lived experience. It provides concrete actions to align national health strategies with international commitments like IGAP, fostering healthier, more equitable, and more productive societies.
For Healthcare Systems: It advocates for a paradigm shift towards integrated, patient-centered care models that address the full spectrum of needs for individuals with epilepsy, moving beyond episodic treatment to comprehensive, holistic management.
For Research and Innovation: By highlighting unmet needs and critical gaps in understanding, the report steers research efforts towards areas that will yield the most significant impact on diagnosis, treatment, and prevention.
For Advocacy and Civil Society: The report strengthens the hand of patient organizations and advocates, providing them with a powerful tool to engage with policymakers, raise public awareness, and mobilize communities. As an associate chapter of IBE since 2021, Epilepsy Alliance America, for instance, is poised to leverage this data to inform its own advocacy efforts, shape its strategic plan, and guide its activities with its own chapters and partners.
The International Bureau for Epilepsy will use the comprehensive data gleaned from GENS to inform its global advocacy strategies, shape its forthcoming strategic plan, and guide its collaborative activities with its extensive network of chapters and other partners. This report is more than a summation of data; it is a catalyst for change, designed to ensure that epilepsy is no longer a condition shrouded in misunderstanding and neglect, but rather one that receives the attention, resources, and compassionate care it demands on the global stage. The journey towards full inclusion and optimal health for people with epilepsy has gained a powerful new ally in this comprehensive and compelling document.
Download the GENS Policy Advocacy Report: https://genspolicyadvocacy.org/
Access the GENS Research Article: https://onlinelibrary.wiley.com/doi/abs/10.1002/epi4.70237
