Geneva, Switzerland – In a landmark moment for global health advocacy, the International Bureau for Epilepsy (IBE) officially launched its groundbreaking Policy Advocacy Report at the 79th World Health Assembly (WHA) in Geneva. This pivotal report, deeply rooted in the authentic voices and lived experiences of individuals affected by epilepsy, marks a significant step towards embedding patient priorities directly into the heart of global policy discussions. Its unveiling underscores a collective commitment to transcend conventional medical perspectives, reframing epilepsy not merely as a health challenge but as a profound human rights, social inclusion, and sustainable development imperative.
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The launch event, held amidst the prestigious setting of WHO Headquarters, was a high-level side event co-organised by the influential "One Neurology" initiative and a consortium of WHO Non-State Actors, including the IBE itself, the Multiple Sclerosis International Federation (MSIF), and Alzheimer’s Disease International (ADI). This collaborative effort, generously supported by the Italian Ministry of Health, highlighted the interconnectedness of neurological conditions and the shared urgency for comprehensive, patient-centered approaches in global health strategies.
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The Genesis of Advocacy: The Global Epilepsy Needs Study (GENS)
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At the core of this transformative report lies the IBE’s monumental Global Epilepsy Needs Study (GENS). This ambitious undertaking was conceived to move beyond the clinical understanding of seizures, delving into the multifaceted realities faced by people living with epilepsy across the globe. GENS represents an unprecedented effort to gather empirical evidence directly from those most affected, providing an irrefutable foundation for policy recommendations.
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The study’s methodology was robust and far-reaching, encompassing nearly 5,300 comprehensive survey responses from diverse geographical and socio-economic contexts. Complementing this quantitative data, 75 in-depth interviews were conducted, offering rich qualitative insights into the daily struggles, triumphs, and systemic barriers encountered by individuals with epilepsy. These interviews served as powerful narratives, giving human context to the statistical findings and ensuring that the nuances of lived experience were not lost in translation.
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GENS meticulously explored a wide array of domains critical to quality of life, including healthcare access and quality, educational opportunities, employment prospects, safety concerns, transportation challenges, and the pervasive issue of social inclusion. By examining these diverse facets, the study illuminated the holistic impact of epilepsy, revealing how the condition extends far beyond the medical realm, permeating every aspect of an individual’s life.
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Bridging the Chasm: From Global Frameworks to Everyday Reality
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A central and recurring theme powerfully articulated during the launch event, and a cornerstone of the report’s findings, was the stark and often disheartening gap between high-level policy commitments and the lived realities on the ground. Donna Walsh, CEO of the IBE, passionately underscored this critical disconnect. "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, her words resonating with the urgency of practical implementation.
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This sentiment encapsulates the very essence of the IBE’s advocacy: to ensure that international declarations and strategic plans translate into tangible, meaningful improvements in the everyday lives of people with epilepsy. The report serves as a vital bridge, translating the raw, unfiltered insights gleaned from lived experiences and robust global evidence into concrete, actionable recommendations. Its ultimate objective is to strengthen the implementation of the World Health Organization’s Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) 2022–2031 – a comprehensive strategy designed to address the global burden of neurological conditions.
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A Holistic Perspective: Epilepsy as a Human Rights and Development Issue
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The IBE Policy Advocacy Report strategically positions epilepsy within a broader socio-political framework, asserting its relevance not solely as a health concern but equally as a pressing human rights, social inclusion, and sustainable development issue. This reframing is crucial for eliciting comprehensive, multi-sectoral responses that extend beyond the healthcare system.
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Epilepsy and Human Rights: For many living with epilepsy, fundamental human rights are routinely compromised. The pervasive stigma associated with the condition often leads to discrimination in employment, education, and social interactions. Access to appropriate healthcare, including accurate diagnosis and effective medication, is a basic human right often denied, particularly in low-resource settings. The report advocates for strengthening human rights-based frameworks to protect individuals with epilepsy from prejudice and ensure their full and equal participation in society.
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Epilepsy and Social Inclusion: Social exclusion is a profound consequence of epilepsy-related stigma and misunderstanding. Fear of seizures, misconceptions about the condition, and a lack of public awareness often lead to isolation, bullying, and marginalization. The report emphasizes the need to foster epilepsy-friendly environments, promote understanding, and dismantle barriers that prevent people with epilepsy from fully integrating into their communities and realizing their social potential.
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Epilepsy and Sustainable Development: The impact of epilepsy extends to the broader goals of sustainable development. The inability to access education or secure employment due to epilepsy can perpetuate cycles of poverty, impacting individuals, families, and national economies. Investing in epilepsy care, awareness, and inclusion is an investment in human capital and economic productivity, aligning directly with the United Nations Sustainable Development Goals (SDGs), particularly those related to health, education, decent work, and reducing inequalities.
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A Roadmap for Change: Ten Global Policy Priorities
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The Policy Advocacy Report meticulously outlines ten overarching global policy priorities, further supported by domain-specific recommendations, designed to serve as a comprehensive roadmap for governments, healthcare leaders, researchers, advocates, and civil society organizations worldwide. Each priority addresses a critical facet of improving the lives of people affected by epilepsy:
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Strengthening Human Rights-Based Frameworks: This priority calls for the explicit recognition and protection of the rights of people with epilepsy in national and international legislation, combating discrimination and ensuring equal opportunities in all spheres of life. It emphasizes legal reforms and enforcement mechanisms to safeguard these rights.
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Increasing Awareness of Epilepsy and Seizure First Aid: A fundamental pillar of reducing stigma and improving outcomes is public education. This priority advocates for widespread awareness campaigns to dispel myths, educate the public about epilepsy, and equip communities with essential knowledge of seizure first aid, thereby fostering safer and more inclusive environments.
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Developing National Epilepsy Plans and Programmes: To ensure a coordinated and effective national response, the report urges countries to develop and implement dedicated national epilepsy plans. These plans should integrate epilepsy care into broader health strategies, allocate resources, and establish clear targets for improvement, moving beyond ad-hoc interventions.
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Improving Access to Healthcare and Medicines: This crucial priority addresses the dire need for equitable access to accurate diagnosis, effective anti-seizure medications, and specialized neurological care. It calls for strengthening primary healthcare systems, ensuring drug availability and affordability, and addressing workforce shortages in neurology.
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Providing Integrated Holistic Care: Epilepsy care should not be confined to seizure management alone. This priority advocates for a holistic approach that addresses the physical, mental, and social well-being of individuals with epilepsy. It includes mental health support, rehabilitation services, and addressing co-morbidities, acknowledging the complex interplay of factors impacting quality of life.
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Driving Research and Innovation: Advancing understanding and treatment of epilepsy requires sustained investment in research. This priority champions increased funding for epilepsy research, fostering innovation in diagnostics, therapeutics, and prevention strategies, and promoting collaborative research efforts globally to accelerate breakthroughs.
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Creating Epilepsy-Friendly Environments: Beyond medical interventions, creating supportive physical and social environments is paramount. This includes advocating for accessible public spaces, safe transportation, supportive workplaces, and educational institutions that understand and accommodate the needs of people with epilepsy, reducing potential triggers and promoting safety.
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Ensuring Meaningful Lived Experience Involvement: The report firmly asserts that those closest to the problem are closest to the solution. This priority emphasizes the imperative of involving people with epilepsy and their caregivers meaningfully in all stages of policy development, implementation, and evaluation, ensuring that solutions are truly relevant and effective.
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Supporting Patient Organisations: Patient advocacy groups play a vital role in providing support, disseminating information, and advocating for change. This priority highlights the need for governments and international bodies to recognize, empower, and financially support patient organizations, enabling them to amplify voices and drive grassroots initiatives.
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Global Implementation of IGAP: The overarching goal is to catalyze and monitor the global implementation of the WHO’s Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) 2022–2031, using the GENS report as a critical evidence base to guide national and international efforts.
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A Call to Action and Future Implications
Ms. Walsh concluded her address by emphasizing the enduring utility of the report as an indispensable implementation and advocacy tool. "We hope that this will be a critical evidence base to inform policymaking and decision-making," she affirmed, "Particularly when it comes to IGAP implementation globally."
The GENS Policy Advocacy Report is not merely a document; it is envisioned as a living roadmap, designed to empower and guide governments, healthcare and research leaders, dedicated advocates, and a myriad of civil society organizations committed to improving the lives of people affected by epilepsy worldwide. Its detailed recommendations provide a practical framework for action, fostering collaboration and ensuring that efforts are strategic, evidence-based, and ultimately, impactful.
The International Bureau for Epilepsy (IBE) has committed to leveraging this rich data to inform its own global advocacy strategies, shape its new strategic plan, and guide its collaborative activities with its extensive network of chapters and partners. As a proud associate chapter of IBE since 2021, Epilepsy Alliance America stands ready to utilize these insights to further its mission and impact within its region.
The launch of the IBE Policy Advocacy Report at the World Health Assembly signifies a pivotal moment in the global fight against epilepsy. By foregrounding lived experiences and translating them into actionable policy, the report paves the way for a more inclusive, equitable, and compassionate future for millions affected by this often-misunderstood condition. It stands as a testament to the power of collective advocacy and the unwavering belief that no one should be left behind in the pursuit of health and human dignity.
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