Global Epilepsy Advocacy Reaches New Heights: IBE Launches Landmark Report at World Health Assembly

Geneva, Switzerland – In a significant move set to reshape global health policy for neurological conditions, the International Bureau for Epilepsy (IBE) officially unveiled its comprehensive new Policy Advocacy Report at the 79th World Health Assembly (WHA) in Geneva. This landmark document directly injects the voices, urgent priorities, and profound lived experiences of people affected by epilepsy into the highest echelons of global policy discourse, aiming to bridge the critical gap between international commitments and the everyday realities faced by millions.

The report, a culmination of extensive research and engagement, is meticulously informed by the findings of IBE’s groundbreaking Global Epilepsy Needs Study (GENS). It serves as a vital blueprint, translating intricate insights from real-world experiences and robust global evidence into a series of actionable, practical recommendations. These recommendations are specifically designed to bolster and accelerate the implementation of the World Health Organization’s (WHO) ambitious Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) for the period 2022–2031, ensuring its objectives translate into tangible improvements on the ground.

The launch event itself was a high-level affair, held as a pivotal side event at the WHO Headquarters. Co-organised under the banner of "One Neurology" – an impactful collaboration among leading non-state actors in the neurological field, including IBE, the Multiple Sclerosis International Federation (MSIF), and Alzheimer’s Disease International (ADI) – the event underscored the power of unified advocacy. The initiative received generous support from the Italian Ministry of Health, highlighting a growing recognition among national governments of the imperative to address neurological health challenges comprehensively.

Table of Contents

Main Facts: Elevating Lived Experience to Policy Frontlines

The core objective of IBE’s new Policy Advocacy Report is audacious yet essential: to ensure that global health frameworks are not merely theoretical constructs but practical tools that deliver meaningful improvements in the daily lives of people with epilepsy. By placing lived experience at its very heart, the report challenges traditional approaches that often overlook the multifaceted challenges beyond clinical symptoms.

Donna Walsh, CEO of the International Bureau for Epilepsy, articulated this vision with clarity during the launch event. "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 emphasised. Her statement resonated deeply with attendees, underscoring the report’s commitment to moving beyond a purely medical perspective to encompass the broader social, economic, and human rights dimensions of living with epilepsy.

The GENS study, the bedrock of this report, represents an unprecedented effort to capture a holistic understanding of these broader realities. It deliberately sought to look beyond the immediate medical aspects of seizures to explore the wider ecosystem of challenges and opportunities facing individuals with epilepsy worldwide. This comprehensive approach ensures that the resulting policy recommendations are not only evidence-based but also deeply empathetic and relevant to the true needs of the community.

Chronology: From Grassroots Insights to Global Recommendations

The journey to the launch of the Policy Advocacy Report began with the conceptualisation and execution of the Global Epilepsy Needs Study (GENS). Recognising a significant void in comprehensive, globally representative data on the lived experience of epilepsy, IBE embarked on GENS with the ambition of creating an unparalleled evidence base.

The Genesis of GENS: A Global Call for Voices

The GENS study was meticulously designed to gather quantitative and qualitative data directly from people with epilepsy and their caregivers across diverse geographical, cultural, and socio-economic contexts. This involved a multi-pronged approach:

Extensive Survey Deployment: Nearly 5,300 survey responses were collected from individuals across numerous countries. These surveys covered a broad spectrum of daily life, delving into critical areas such as access to healthcare, educational opportunities, employment challenges, limitations in transportation, safety concerns, and issues pertaining to social inclusion and stigma.

In-depth Qualitative Interviews: Complementing the quantitative data, 75 in-depth interviews were conducted. These provided rich, nuanced narratives, offering qualitative insights into the personal struggles, triumphs, and aspirations of people living with epilepsy. These personal stories breathed life into the statistics, providing a deeper understanding of the human impact of the condition.

The data collection phase was followed by rigorous analysis, identifying recurring themes, persistent disparities, and critical areas where policy intervention could make the most significant difference. This analytical process directly informed the structure and content of the Policy Advocacy Report, ensuring that every recommendation was firmly rooted in verified global evidence and authentic lived experiences.

Developing the Policy Advocacy Report: Translating Data into Action

With the GENS findings consolidated, the IBE then embarked on the crucial task of translating these insights into concrete, actionable policy recommendations. This involved collaboration with experts, policymakers, and advocates to ensure the report was not only comprehensive but also strategically aligned with existing global health frameworks, particularly the WHO’s IGAP.

The report’s development was an iterative process, refining the identified priorities to be both ambitious and achievable. It culminated in a document that is both a powerful advocacy tool and a practical guide for implementation, designed to be accessible and useful for a wide range of stakeholders.

The 79th World Health Assembly: A Strategic Platform

The decision to launch the report at the 79th World Health Assembly was a deliberate strategic choice. The WHA is the decision-making body of the WHO, attended by delegations from all WHO Member States. It is the pre-eminent global forum for discussing and shaping health policies. Launching the report here ensured maximum visibility among global health leaders, policymakers, and government representatives who possess the authority to enact change. The high-level side event provided a focused platform for IBE and its partners to present their findings and recommendations directly to key influencers, fostering immediate engagement and dialogue.

Supporting Data: Unpacking the GENS Findings and Policy Priorities

The GENS Policy Advocacy Report is a testament to the comprehensive nature of the underlying study. The vast dataset, comprising nearly 5,300 survey responses and 75 detailed interviews, painted a vivid picture of the global epilepsy landscape, highlighting both progress and persistent challenges.

The Scope of GENS: Beyond Seizures

The study’s broad scope was crucial in establishing epilepsy as more than just a medical condition. By exploring areas such as:

Healthcare Access: Examining disparities in diagnosis, treatment, and medication availability.

Education: Understanding barriers to schooling and academic achievement.

Employment: Highlighting difficulties in securing and maintaining jobs due to stigma or lack of accommodation.

Transportation: Assessing limitations in mobility and independence.
Safety: Addressing concerns related to seizure-related injuries and public perception.
Social Inclusion: Investigating the impact of stigma, discrimination, and isolation.

GENS provided irrefutable evidence that epilepsy profoundly impacts every facet of an individual’s life, necessitating a multi-sectoral response.

Ten Global Policy Priorities: A Roadmap for Change

Based on these extensive findings, the Policy Advocacy Report outlines ten overarching global policy priorities, each supported by specific, domain-based recommendations. These priorities form a robust framework for action:

Strengthening Human Rights-Based Frameworks: Advocating for the integration of human rights principles into all epilepsy-related policies and programmes, ensuring non-discrimination and equal opportunities. This includes legislative reforms to protect the rights of people with epilepsy in education, employment, and public life.
Increasing Awareness of Epilepsy and Seizure First Aid: Emphasising the need for public education campaigns to dispel myths, reduce stigma, and equip communities with basic knowledge of seizure recognition and appropriate first aid. This is crucial for creating safer and more understanding environments.
Developing National Epilepsy Plans and Programmes: Urging governments to formulate and implement dedicated national strategies for epilepsy care, prevention, and support, integrating them within broader neurological and non-communicable disease (NCD) plans. These plans should include clear targets, resource allocation, and monitoring mechanisms.
Improving Access to Healthcare and Medicines: Calling for equitable access to affordable, quality diagnostic tools, anti-seizure medications, and specialised care, particularly in low-resource settings. This involves strengthening primary healthcare systems and ensuring robust supply chains for essential medicines.
Providing Integrated Holistic Care: Moving beyond fragmented medical care to a comprehensive approach that addresses physical, mental, and social well-being. This includes access to psychological support, rehabilitation services, and social assistance programmes.
Driving Research and Innovation: Advocating for increased investment in epilepsy research, covering areas from basic science and new drug development to public health interventions and social science research on stigma and quality of life.
Creating Epilepsy-Friendly Environments: Promoting policies and practices that foster inclusive environments in schools, workplaces, public spaces, and transportation systems, ensuring accessibility and reasonable accommodations for people with epilepsy.
Ensuring Meaningful Lived Experience Involvement: Stressing the imperative of involving people with epilepsy and their caregivers at all stages of policy development, implementation, and evaluation, ensuring that solutions are truly responsive to their needs.
Supporting Patient Organisations: Recognising and strengthening the vital role of patient advocacy groups in providing support, disseminating information, and advocating for the rights of people with epilepsy.
Global Collaboration and Data Sharing: Encouraging international partnerships and platforms for sharing best practices, research findings, and epidemiological data to accelerate progress worldwide.

By detailing these priorities, the report offers a clear and actionable blueprint for governments, healthcare systems, and civil society organisations globally.

Official Responses: Voices for Change

The launch event at the WHO Headquarters was a convergence of influential voices, all echoing the urgent need for action on epilepsy. Donna Walsh’s impassioned address served as a focal point, articulating the IBE’s vision and the report’s foundational premise.

Donna Walsh: Bridging the Policy-Reality Divide

Ms. Walsh reiterated a central theme emerging from the GENS study: the stark and often disheartening gap between high-level policy commitments and the lived realities of individuals. Her statement, "There is no point creating global frameworks unless they really address what matters most to those people living with neurological conditions across the world," served as a powerful call to accountability. She elaborated on the critical need for global frameworks, such as the WHO’s IGAP, to be translated into tangible, measurable improvements in daily life, moving beyond aspirational statements to concrete implementation.

Ms. Walsh highlighted that the GENS study was specifically designed to provide the evidence required to bridge this divide. By meticulously documenting experiences across healthcare, education, employment, and social inclusion, the report offers an irrefutable evidence base to inform policymaking and decision-making, particularly concerning IGAP implementation globally.

The "One Neurology" Initiative: A Unified Front

The co-organisation of the event by the "One Neurology" group – comprising IBE, MSIF, and ADI – signifies a powerful paradigm shift in advocacy for neurological conditions. This collaborative approach acknowledges the shared challenges faced by people living with diverse neurological disorders, from stigma and discrimination to inadequate access to care and research funding. By presenting a united front, these organisations amplify their collective voice, advocating for comprehensive neurological health strategies that benefit all. The Italian Ministry of Health’s support further underscores a growing governmental recognition of this unified approach, signaling potential for stronger national and international partnerships.

Implications: A Roadmap for Transformative Action

The launch of the IBE Policy Advocacy Report at the World Health Assembly carries profound implications for the future of epilepsy care and advocacy globally. It is not merely a document; it is intended as a dynamic tool for driving transformative change.

Empowering IGAP Implementation

The report’s most immediate and critical implication is its potential to significantly empower the implementation of the WHO’s Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) 2022-2031. IGAP itself is a landmark plan, aiming to improve the lives of people with neurological disorders worldwide by strengthening prevention, diagnosis, treatment, care, and rehabilitation. However, a plan’s success hinges on its effective implementation at national and local levels. The IBE report provides the specific, evidence-based recommendations and lived experience insights necessary to operationalise IGAP’s broad objectives, offering concrete pathways for Member States to develop and execute their national strategies. It serves as a practical companion to IGAP, translating its strategic goals into actionable steps.

A Comprehensive Lens: Epilepsy as a Societal Issue

By positioning epilepsy not solely as a health issue but as a fundamental human rights, social inclusion, and sustainable development challenge, the report broadens the scope of responsibility and potential intervention. This wider lens implies:

Human Rights: Governments have an obligation to ensure that people with epilepsy enjoy the same rights and opportunities as others, free from discrimination. This calls for legal reforms, awareness campaigns, and accessible services.
Social Inclusion: Policies must actively dismantle barriers to social participation, fostering environments where individuals with epilepsy can thrive in education, employment, and community life without fear of stigma or exclusion.
Sustainable Development: Addressing epilepsy is intrinsically linked to achieving several Sustainable Development Goals (SDGs), particularly those related to good health and well-being (SDG 3), quality education (SDG 4), decent work and economic growth (SDG 8), and reduced inequalities (SDG 10). The report argues that progress on epilepsy contributes directly to broader societal development.

This reframing encourages a multi-sectoral approach, engaging ministries of education, labour, social welfare, and justice, not just health ministries.

A Tool for Diverse Stakeholders

The GENS Policy Advocacy Report is designed to be a versatile roadmap for a diverse array of stakeholders:

Governments: To inform the development of national epilepsy plans, allocate resources effectively, and enact protective legislation.
Healthcare and Research Leaders: To guide priorities in clinical practice, public health interventions, and scientific inquiry, ensuring research addresses real-world needs.
Advocates and Civil Society Organisations: To strengthen their advocacy efforts with evidence-based arguments, mobilise communities, and hold policymakers accountable.
People Affected by Epilepsy: To empower them with knowledge and a collective voice, reinforcing their role as active participants in shaping policies that affect their lives.

Future Outlook: Sustained Advocacy and Impact

The IBE’s commitment to leveraging this data extends beyond the launch. As Donna Walsh stated, "We hope that this will be a critical evidence base to inform policymaking and decision-making." The organisation plans to use the report to inform its global advocacy strategies, shape its new strategic plan, and guide its activities with its chapters and partners worldwide, such as Epilepsy Alliance America, which has been an associate chapter since 2021. This sustained effort will be crucial in ensuring that the report’s recommendations are not just heard but acted upon, leading to tangible improvements in the lives of the estimated 50 million people living with epilepsy globally.

The journey initiated by the GENS study and culminated in the Policy Advocacy Report marks a pivotal moment in global epilepsy advocacy. By giving a powerful voice to lived experiences and translating them into actionable policy, IBE has laid a robust foundation for a future where epilepsy is understood, respected, and effectively addressed at every level of society.

Download the GENS Policy Advocacy Report: https://genspolicyadvocacy.org/
Access the GENS Research Article: https://onlinelibrary.wiley.com/doi/abs/10.1002/epi4.70237