Geneva, Switzerland – The global effort to transform the lives of people living with epilepsy received a significant boost this week as the International Bureau for Epilepsy (IBE) officially launched its groundbreaking Policy Advocacy Report at the 79th World Health Assembly in Geneva. This pivotal report marks a concerted effort to directly integrate the voices, priorities, and profound lived experiences of individuals affected by epilepsy into the highest echelons of global health policy discussions, signalling a new era of patient-centred advocacy.
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The launch event, held during a high-level side event at the World Health Organization (WHO) Headquarters, was a testament to collaborative spirit. Co-organised by One Neurology and key WHO Non-State Actors – including IBE itself, the Multiple Sclerosis International Federation (MSIF), and Alzheimer’s Disease International (ADI) – the initiative received crucial support from the Italian Ministry of Health. This coalition underscores a growing recognition that neurological conditions, while distinct, share common challenges and require a unified, intersectoral approach to drive meaningful change.
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Elevating Lived Experiences to Global Policy
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At its core, the Policy Advocacy Report is an ambitious endeavour to bridge the chasm between abstract policy commitments and the tangible realities faced by millions worldwide. It is meticulously informed by the findings of IBE’s landmark Global Epilepsy Needs Study (GENS), a comprehensive research initiative designed to capture a nuanced understanding of life with epilepsy. By translating these invaluable insights and robust global evidence into actionable, practical recommendations, the report aims to invigorate and strengthen the implementation of the World Health Organization’s Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) 2022–2031.
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Donna Walsh, CEO of IBE, articulated the report’s profound purpose during the launch event. Her address underscored the critical imperative of ensuring that global frameworks are not merely theoretical constructs but translate into discernible, positive improvements in the daily lives of people. "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 stated emphatically, highlighting the report’s commitment to tangible impact. She further elaborated that the GENS study intentionally looked beyond the clinical aspect of seizures to comprehend the broader, multifaceted realities confronting individuals with epilepsy globally – encompassing social, economic, and human rights dimensions.
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The Genesis of the Report: Unveiling the Global Epilepsy Needs Study (GENS)
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The foundation of the new Policy Advocacy Report lies in the comprehensive data and narratives gathered through the Global Epilepsy Needs Study (GENS). This ambitious research undertaking set out to paint a detailed picture of the challenges and needs of people with epilepsy from their own perspectives, going beyond clinical data to capture the lived experience.
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Beyond Seizures: A Holistic View of Life with Epilepsy
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GENS meticulously gathered nearly 5,300 survey responses and conducted 75 in-depth interviews across a diverse range of countries. This extensive data collection allowed researchers to explore a multitude of critical areas that profoundly impact the lives of people with epilepsy. These areas included, but were not limited to:
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- Healthcare Access and Quality: Investigating the availability of neurologists, antiepileptic drugs, diagnostic tools, and the quality of care received, including follow-up and holistic treatment approaches.
- Education: Examining barriers to school attendance, discrimination within educational settings, and the need for accommodations to support learning for students with epilepsy.
- Employment: Uncovering challenges related to job security, workplace discrimination, lack of reasonable accommodations, and the economic impact of epilepsy on individuals and families.
- Transportation: Exploring difficulties in accessing safe and reliable transportation, particularly in contexts where driving licenses may be restricted, impacting independence and social participation.
- Safety: Addressing concerns about personal safety during seizures, the availability of first aid, and the broader societal understanding of how to respond to an epileptic event.
- Social Inclusion: Delving into issues of stigma, isolation, discrimination in social settings, and the psychological burden associated with living with a misunderstood condition.
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By casting such a wide net, GENS illuminated the systemic and societal barriers that often prevent people with epilepsy from enjoying full and equitable participation in their communities. The study revealed that while medical management of seizures is crucial, it is only one piece of a much larger puzzle. The profound impact of epilepsy extends into every facet of life, necessitating an integrated, intersectoral response that addresses not just the health condition, but also its social, economic, and human rights dimensions.
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Bridging the Policy-Reality Chasm
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One of the strongest and most recurring themes that emerged during the GENS study, and subsequently became a central tenet of the report and its launch, was the stark and often disheartening gap between global policy commitments and the everyday reality experienced by people with epilepsy. While international declarations and national strategies may exist on paper, their implementation often falls short, leaving individuals to navigate a world unprepared to accommodate their needs.
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Ms. Walsh’s pointed remark, "There is no point creating global frameworks unless they really address what matters most to those people living with neurological conditions across the world," encapsulates this critical observation. This gap manifests in various ways: a lack of accessible and affordable medication in low-income settings, insufficient training for first responders and educators, discriminatory practices in workplaces, and a pervasive societal stigma that marginalizes individuals. The report powerfully argues that policies must be co-created with, and rigorously monitored for their impact on, the very individuals they are intended to serve. Without this direct link, policies risk becoming hollow promises, failing to deliver the tangible improvements in quality of life that are desperately needed. The GENS report is thus a clarion call to action, demanding that policymakers move beyond rhetoric to implement practical, impactful solutions informed by authentic lived experiences.
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A Collaborative Platform for Change: The Launch Event in Geneva
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The launch of the IBE Policy Advocacy Report at the WHO Headquarters in Geneva was far more than a mere presentation; it was a demonstration of a unified global commitment to addressing neurological disorders. The choice of venue and the array of co-organizers underscored the strategic importance of this initiative.
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A Unified Front Against Neurological Disorders
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The high-level side event was notably co-organised by One Neurology, an initiative that champions a holistic approach to neurological health, bringing together various stakeholders under a common banner. This collaboration extended to key WHO Non-State Actors, a collective that plays a crucial role in advising and supporting the WHO’s global health agenda. The presence and active involvement of organisations like the Multiple Sclerosis International Federation (MSIF) and Alzheimer’s Disease International (ADI) alongside IBE signaled a powerful message: the challenges posed by neurological conditions are interconnected, and a siloed approach is no longer tenable.
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This unified front allows for shared advocacy strategies, pooled resources, and a magnified voice in global health dialogues. By presenting a cohesive message that transcends individual conditions, these organizations can collectively advocate for stronger health systems, increased research funding, better public awareness campaigns, and comprehensive support services for all individuals living with neurological disorders. The collaboration at the launch event exemplified a strategic move towards a more integrated global response, recognizing that advances in one area of neurological health can often create ripple effects across others.
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The Italian Ministry of Health’s Pivotal Support
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A significant factor in the success and prominence of the launch event was the generous support provided by the Italian Ministry of Health. This governmental backing elevated the event, lending it official gravitas and demonstrating that national governments are increasingly recognizing the imperative of prioritizing neurological health on their agendas.
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The Italian Ministry of Health’s involvement goes beyond mere financial assistance; it signifies a political will to engage with and champion the recommendations put forth by organizations like IBE. Such support is crucial for translating global policy discussions into national action plans and resource allocation. It sends a strong signal to other member states of the WHO that investing in neurological health, including epilepsy care and advocacy, is a responsible and necessary commitment. Their partnership highlights the potential for successful public-private and international collaborations in driving global health initiatives forward, setting a precedent for how member states can actively contribute to the objectives outlined in the WHO’s IGAP.
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The Blueprint for Action: Key Policy Priorities and Recommendations
The GENS Policy Advocacy Report is not just a diagnostic tool; it is a comprehensive blueprint for action, outlining ten global policy priorities alongside specific, actionable recommendations across various domains. These priorities aim to create a world where people with epilepsy live free from stigma, have full access to care, and can participate fully in society.
Upholding Human Rights and Dignity
The report unequivocally positions epilepsy not merely as a health issue, but fundamentally as a human rights issue. It calls for the strengthening of human rights-based frameworks to protect individuals with epilepsy from discrimination in all spheres of life, including employment, education, and social participation. Recommendations include advocating for legal reforms to eliminate discriminatory laws, ensuring equal opportunities, and promoting the full inclusion of people with epilepsy in decision-making processes that affect their lives. This priority underscores the belief that dignity and respect are fundamental rights for everyone, regardless of health status.
Fostering Awareness and First Aid Competence
A critical barrier to optimal outcomes for people with epilepsy is the pervasive lack of public awareness and understanding. The report emphasizes the urgent need for widespread public education campaigns to demystify epilepsy, combat stigma, and crucially, educate communities on seizure first aid. Recommendations include developing national awareness strategies, integrating epilepsy education into school curricula, and training first responders, teachers, and employers on appropriate and safe responses during a seizure. Increased knowledge can dispel myths, reduce fear, and foster a more supportive environment.
National Strategies for Local Impact
Recognizing that global frameworks require localized implementation, the report advocates for the development of tailored national epilepsy plans and programmes. These plans should be comprehensive, multi-sectoral, and integrate epilepsy care into existing health systems. Recommendations involve establishing national epilepsy commissions or task forces, conducting needs assessments to identify local challenges, and allocating dedicated resources for the implementation of these plans, ensuring they are culturally appropriate and responsive to specific country contexts.
Ensuring Equitable Access to Care and Medication
Access to appropriate healthcare and essential medicines remains a significant challenge, particularly in low- and middle-income countries. The report calls for concerted efforts to improve access to accurate diagnosis, specialist neurological care, and a consistent supply of affordable, quality antiepileptic drugs. Recommendations include strengthening primary healthcare systems to manage epilepsy, training general practitioners, integrating epilepsy care into universal health coverage schemes, and advocating for policies that ensure the affordability and availability of essential medicines.
Embracing Integrated, Holistic Care Models
Epilepsy often comes with comorbidities such as mental health issues, learning difficulties, and social challenges. The report stresses the importance of moving beyond a seizure-centric model to provide integrated, holistic care that addresses all aspects of an individual’s well-being. Recommendations include integrating mental health services into epilepsy clinics, providing psychosocial support, offering vocational rehabilitation, and ensuring coordinated care pathways that involve various healthcare professionals and support services.
Catalysing Research and Innovation
To drive progress in understanding, treating, and ultimately preventing epilepsy, sustained investment in research and innovation is paramount. The report advocates for increased funding for epilepsy research, encompassing basic science, clinical trials for new therapies, and public health research into prevention and care delivery models. Recommendations include fostering international research collaborations, supporting data collection and surveillance, and translating research findings into improved clinical practice and policy.
Cultivating Epilepsy-Friendly Environments
Creating environments that are safe, inclusive, and supportive for people with epilepsy is a key objective. This involves addressing physical, social, and attitudinal barriers. Recommendations include advocating for workplace accommodations, ensuring safe public spaces, promoting accessible transportation, and fostering inclusive educational settings. An "epilepsy-friendly environment" is one where individuals can thrive without fear of judgment or discrimination, and where support is readily available.
Empowering Lived Experience Involvement
The report places a strong emphasis on the principle of "nothing about us without us." It calls for ensuring meaningful involvement of people with epilepsy and their caregivers in all stages of policy development, programme design, and research. Recommendations include establishing formal mechanisms for patient representation, co-designing services with lived experience experts, and empowering individuals to become advocates for their own health and rights. This ensures that policies are truly patient-centred and reflective of real needs.
Strengthening Patient Organisations
Patient organisations play a vital role in advocacy, support, education, and community building. The report highlights the need to support and strengthen these organisations, recognizing their unique capacity to reach and empower people with epilepsy. Recommendations include providing capacity-building support, facilitating networking among organisations, and recognizing their crucial role as partners in health policy implementation and monitoring.
Official Responses and Strategic Imperatives
The launch event provided a critical platform for official responses and underscored the strategic imperative of the IBE’s new report in the broader landscape of global health.
Donna Walsh on Translating Frameworks into Tangible Change
Donna Walsh, CEO of IBE, reiterated the core message that global policy frameworks, no matter how well-intentioned, are only valuable if they lead to tangible improvements in everyday life. Her impassioned address resonated with attendees, emphasizing the urgency of moving from commitment to action. She elucidated that "meaningful improvements" encompass not just better access to medication, but also freedom from discrimination in employment, the ability to pursue education without barriers, and full social participation without fear of stigma. Ms. Walsh stressed that the GENS study, by detailing the broad realities facing people with epilepsy, provides the compelling evidence needed to push for these practical, life-altering changes. The report, she asserted, serves as a crucial bridge, translating the raw data of human experience into compelling arguments for policy reform and resource allocation.
Aligning with WHO’s Intersectoral Global Action Plan (IGAP)
A significant strategic dimension of the IBE Policy Advocacy Report is its explicit alignment with the World Health Organization’s Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) 2022–2031. IGAP represents the global health community’s commitment to addressing the enormous burden of neurological conditions, and IBE’s report is designed to be a direct, practical tool for its implementation.
The report provides the detailed, evidence-based recommendations that can inform how individual countries and global health actors fulfil their IGAP obligations. By outlining specific policy priorities, from strengthening human rights frameworks to improving access to care, the report offers a granular roadmap for translating IGAP’s broad objectives into concrete national and local initiatives. As Ms. Walsh concluded, "We hope that this will be a critical evidence base to inform policymaking and decision-making, particularly when it comes to IGAP implementation globally." This integration ensures that the IBE’s advocacy efforts are not isolated but are powerfully synergistic with the WHO’s overarching global strategy for neurological health, maximizing its potential for widespread impact.
Looking Ahead: The Far-Reaching Implications of the GENS Report
The launch of the IBE Policy Advocacy Report marks a pivotal moment, but it is just the beginning of a sustained effort. The report is designed as a living document, a dynamic tool to drive continuous improvement and advocacy.
A Roadmap for Stakeholders Worldwide
The GENS Policy Advocacy Report is explicitly intended to serve as a comprehensive roadmap for a diverse array of stakeholders around the globe. This includes:
- Governments: Providing them with evidence-based recommendations to formulate and strengthen national epilepsy plans, allocate resources, and enact protective legislation.
- Healthcare and Research Leaders: Guiding their strategies for improving clinical care, expanding access to specialists and medicines, and prioritizing research agendas that address unmet needs.
- Advocates: Equipping them with robust data and policy arguments to champion the rights and needs of people with epilepsy at local, national, and international levels.
- Civil Society Organisations: Empowering them to organize, educate, and support communities affected by epilepsy, drawing on the report’s insights to inform their programmes and services.
By offering clear, actionable pathways, the report aims to galvanize collective action and foster a more coordinated, effective global response to epilepsy. Its detailed recommendations provide a common language and a shared vision for all those committed to improving the lives of people affected by the condition.
IBE’s Ongoing Commitment and Strategic Direction
For the International Bureau for Epilepsy itself, the GENS data and the Policy Advocacy Report will be instrumental in shaping its future direction. IBE has explicitly stated that this invaluable data will inform its global advocacy strategies, ensuring that its efforts are always grounded in the lived experiences and expressed needs of the epilepsy community.
Furthermore, the findings will directly shape IBE’s new strategic plan, guiding its priorities and initiatives for the coming years. This ensures that IBE’s work remains relevant, impactful, and responsive to the evolving landscape of epilepsy care and advocacy. The report will also guide IBE’s activities with its numerous chapters and other international partners, fostering collaborative projects and ensuring that advocacy efforts are harmonized and amplified across different regions and contexts. This internal commitment underscores the long-term vision behind the report, positioning it as a foundational document for IBE’s continued leadership in global epilepsy advocacy.
The Role of Associate Chapters like Epilepsy Alliance America
The global network of IBE, comprising its chapters and associate chapters, plays a crucial role in translating global advocacy into local impact. Epilepsy Alliance America, for instance, has been a proud associate chapter of IBE since 2021. Such partnerships are vital for the successful dissemination and implementation of the report’s recommendations.
Associate chapters serve as the frontline, adapting global guidelines to national and local contexts, advocating to their respective governments, and providing direct support to individuals and families living with epilepsy. They are essential for collecting further localized data, identifying specific regional challenges, and ensuring that the global momentum generated by reports like GENS translates into tangible improvements where they matter most – in communities and individual lives. Their ongoing collaboration with IBE ensures a continuous feedback loop, refining strategies and strengthening the global movement for epilepsy awareness, care, and rights.
Accessing the Transformative Resources
The GENS Policy Advocacy Report is a public resource, intended for wide dissemination and utilization. Its creators urge all interested parties to access and engage with its findings.
For those dedicated to advancing the cause of epilepsy care and advocacy, the full GENS Policy Advocacy Report is available for download at genspolicyadvocacy.org. Additionally, the foundational GENS Research Article, providing a deeper dive into the study’s methodology and findings, can be accessed via onlinelibrary.wiley.com/doi/abs/10.1002/epi4.70237. These resources represent a critical step forward in the collective journey towards a world free from the burden of epilepsy.
