Elevating Lived Experience: IBE's Landmark Report Demands Action for People with Epilepsy on the Global Stage

Geneva, Switzerland – In a pivotal moment for global health advocacy, the International Bureau for Epilepsy (IBE) officially unveiled its comprehensive new Policy Advocacy Report at the 79th World Health Assembly. This groundbreaking report, forged from the deep insights of thousands living with epilepsy worldwide, marks a concerted effort to inject the authentic voices, pressing priorities, and profound lived experiences of people affected by epilepsy directly into the highest echelons of international policy discussions. Its launch signifies a critical step towards bridging the persistent gap between global health commitments and the often-harsh realities faced by individuals navigating epilepsy in their daily lives.

The report’s significance cannot be overstated. It is not merely a collection of data but a powerful call to action, meticulously informed by the findings of IBE’s landmark Global Epilepsy Needs Study (GENS). By translating these invaluable lived experience insights and robust global evidence into a set of practical, actionable recommendations, the report aims to dramatically strengthen the implementation of the World Health Organization’s (WHO) Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) 2022–2031. This strategic alignment ensures that the report serves as a vital compass, guiding policymakers and stakeholders toward more effective, human-centered approaches to epilepsy care and support.

Table of Contents

A Groundbreaking Launch at the World Health Assembly

The launch event itself was a testament to the growing global momentum behind neurological health. Held during a high-level side event at the prestigious WHO Headquarters in Geneva, it brought together a formidable coalition of international partners. The event was co-organised by the influential One Neurology initiative and key WHO Non-State Actors, including IBE, the Multiple Sclerosis International Federation (MSIF), and Alzheimer’s Disease International (ADI). This collaborative effort underscored the shared commitment to addressing the broad spectrum of neurological conditions and highlighted the power of unified advocacy. Crucially, the event also benefited from the generous support of the Italian Ministry of Health, signifying a strong political endorsement from a leading European nation and its dedication to advancing global health priorities.

The atmosphere at the launch was charged with purpose. Delegates, health ministers, and advocates listened intently as Donna Walsh, CEO of the International Bureau for Epilepsy, articulated the core philosophy underpinning the report. Her address centred on the critical imperative of ensuring that grand global frameworks and ambitious policy commitments translate into tangible, meaningful improvements in the everyday lives of people living with epilepsy. Ms. Walsh emphasised that the GENS study, and consequently the report, intentionally looked "beyond seizures alone." This deliberate shift in focus aimed to cultivate a much deeper, more nuanced understanding of the broader social, economic, and human rights realities confronting individuals with epilepsy across diverse cultural and geographical landscapes.

The Genesis of the Report: Unveiling the Global Epilepsy Needs Study (GENS)

The Policy Advocacy Report is the culmination of years of dedicated research and engagement, anchored by the comprehensive Global Epilepsy Needs Study (GENS). This ambitious study was conceived out of a recognised need for robust, internationally comparable data that genuinely captured the lived experience of epilepsy, moving beyond clinical metrics to encompass the multifaceted challenges faced by individuals and their families.

Bridging the Data Gap

For too long, policy decisions concerning epilepsy have been hampered by a lack of granular, qualitative, and patient-centred data. While epidemiological studies provide crucial insights into prevalence and incidence, they often fall short in illuminating the daily struggles with stigma, discrimination, educational barriers, employment challenges, and inadequate healthcare access. GENS sought to bridge this critical data gap by directly engaging with the epilepsy community.

The sheer scale of the GENS initiative is impressive. It meticulously gathered nearly 5,300 survey responses from individuals living with epilepsy, caregivers, and healthcare professionals across multiple countries, providing a broad quantitative overview. Complementing this extensive survey data, 75 in-depth qualitative interviews were conducted. These interviews offered invaluable narrative insights, allowing participants to share their personal stories, challenges, and aspirations in their own words. This dual approach ensured both statistical robustness and profound human resonance, lending immense credibility and authenticity to the report’s findings.

Beyond Seizures: A Holistic View

The scope of GENS was intentionally broad, reflecting the reality that epilepsy impacts far more than just physical health. The study meticulously explored a wide array of domains critical to quality of life, including:

Healthcare Access and Quality: Investigating disparities in diagnosis, treatment, medication availability, and specialist care.

Education: Uncovering barriers to schooling, learning difficulties, and the need for inclusive educational environments.

Employment: Addressing discrimination in the workplace, challenges in securing and maintaining jobs, and the economic impact of epilepsy.

Transportation: Examining limitations in mobility and the implications for independence and social participation.

Safety: Exploring concerns related to seizure management in public spaces and the need for greater public understanding and first aid knowledge.

Social Inclusion and Stigma: Delving into the pervasive issue of social isolation, discrimination, and the societal stigma associated with epilepsy.

One of the most powerful and consistently echoed themes that emerged from the GENS findings, and subsequently discussed during the launch event, was the stark and often painful "gap between policy commitments and everyday reality." Ms. Walsh underscored this by stating, "There is no point creating global frameworks unless they really address what matters most to those people living with neurological conditions across the world." This sentiment encapsulates the report’s core mission: to ensure that policies are not abstract declarations but practical tools that genuinely improve lives.

Furthermore, the report fundamentally repositions epilepsy not solely as a clinical health issue, but as a multifaceted challenge deeply intertwined with human rights, social inclusion, and sustainable development. This broader perspective is crucial for garnering intersectoral support and integrating epilepsy advocacy into wider global agendas.

From Insights to Action: The Ten Global Policy Priorities

The GENS Policy Advocacy Report distils its extensive findings into ten overarching global policy priorities, each supported by specific, domain-based recommendations. These priorities form a comprehensive roadmap for governments, healthcare providers, and civil society organizations striving to make a tangible difference.

1. Strengthening Human Rights-Based Frameworks

This priority calls for the explicit integration of human rights principles into all national and international policies related to epilepsy. It advocates for legal protections against discrimination in education, employment, and public life, ensuring that people with epilepsy enjoy the same rights and opportunities as all citizens. This includes advocating for the ratification and implementation of international conventions that protect the rights of persons with disabilities.

2. Increasing Awareness of Epilepsy and Seizure First Aid

Pervasive stigma and misinformation remain significant barriers. This priority stresses the urgent need for targeted public awareness campaigns to demystify epilepsy, reduce stigma, and educate the public on appropriate seizure first aid. Enhanced awareness can empower communities, foster supportive environments, and potentially save lives by ensuring correct immediate responses during seizures.

3. Developing National Epilepsy Plans and Programmes

Effective change requires strategic planning at the national level. The report urges governments to develop and adequately fund comprehensive national epilepsy plans. These plans should outline specific goals, timelines, and resource allocations for improving diagnosis, treatment, care, and social support services, tailored to the unique context of each country.

4. Improving Access to Healthcare and Medicines

This priority tackles the glaring disparities in access to essential anti-seizure medications, diagnostic tools, and specialist neurological care, particularly in low- and middle-income countries. Recommendations include strengthening supply chains, reducing medication costs, expanding healthcare infrastructure, and training more healthcare professionals in epilepsy management.

5. Providing Integrated Holistic Care

Epilepsy care extends beyond medication. The report advocates for integrated, holistic care models that address not only seizures but also co-occurring conditions (e.g., depression, anxiety), mental health needs, psychological support, and social challenges. This requires multidisciplinary teams and seamless coordination across various health and social services.

6. Driving Research and Innovation

Continued investment in research is vital for improving diagnostic methods, developing new treatments with fewer side effects, and understanding the underlying mechanisms of epilepsy. This priority calls for increased funding for basic, clinical, and implementation research, fostering innovation that translates into improved patient outcomes.

7. Creating Epilepsy-Friendly Environments

Beyond healthcare settings, societies need to adapt to be more inclusive. This includes promoting epilepsy-friendly workplaces, schools, and public spaces through reasonable accommodations, flexible policies, and accessible information. It’s about fostering environments where individuals with epilepsy can participate fully and safely without fear of discrimination or misunderstanding.

8. Ensuring Meaningful Lived Experience Involvement

Central to the report’s philosophy, this priority emphasizes that people with epilepsy must be actively involved in the design, implementation, and evaluation of policies and services that affect their lives. Their unique insights are indispensable for creating effective and relevant solutions, ensuring that policies are truly person-centred.

9. Supporting Patient Organisations

Patient organisations play a crucial role in advocacy, support, and information dissemination. The report calls for greater recognition and financial support for these organisations, enabling them to expand their reach, strengthen their capacity, and continue to be powerful advocates for their communities.

10. Strengthening Surveillance and Data Collection

Robust data collection is essential for monitoring progress, identifying unmet needs, and guiding policy adjustments. This priority advocates for improved national and global surveillance systems for epilepsy, including comprehensive registries and regular surveys that capture both clinical data and lived experience indicators.

Bridging Policy and Reality: Official Responses and Expert Perspectives

The launch event served as a crucial platform for galvanizing support and commitment from various stakeholders. The official responses and expert perspectives shared during the event underscored the collective recognition of the report’s urgency and strategic importance.

IBE’s Call to Action

Donna Walsh’s impassioned concluding remarks resonated deeply with the audience. She reiterated the IBE’s steadfast commitment to leveraging the report as an essential "implementation and advocacy tool" moving forward. "We hope that this will be a critical evidence base to inform policymaking and decision-making," she stated, with particular emphasis on its role in "IGAP implementation globally." Her message was clear: the report is not meant to gather dust, but to be actively utilized by governments, healthcare leaders, researchers, advocates, and civil society organizations as a practical roadmap for improving the lives of people affected by epilepsy worldwide. The IBE, for its part, has already committed to using this data to inform its global advocacy, shape its new strategic plan, and guide its activities with chapters and other partners, including Epilepsy Alliance America, a proud associate chapter since 2021.

WHO’s Intersectoral Global Action Plan (IGAP) Context

The report’s direct alignment with the WHO’s Intersectoral Global Action Plan (IGAP) 2022–2031 is a strategic masterstroke. IGAP represents a landmark commitment by WHO member states to address epilepsy and other neurological disorders, recognizing their significant global burden. By providing concrete, lived experience-informed recommendations, the IBE report transforms IGAP from a high-level strategic document into an actionable blueprint for implementation. It offers a vital framework for countries to develop their own national plans, ensuring that global ambitions are translated into localized, impactful interventions.

Perspectives from Co-Organizers

The collaboration with One Neurology, MSIF, and ADI highlights a growing understanding that neurological conditions, while distinct, share common challenges related to stigma, access to care, and the need for integrated support. Representatives from MSIF and ADI likely echoed the sentiment that patient-centered data is crucial for all neurological conditions, reinforcing the idea that lessons learned from epilepsy advocacy can benefit the broader neurological community. The generous support from the Italian Ministry of Health further demonstrates a political will to invest in neurological health, potentially setting a precedent for other member states to follow in prioritizing the implementation of IGAP and similar initiatives. This multi-stakeholder collaboration amplifies the report’s voice and broadens its potential impact.

The Patient Voice Amplified

Perhaps the most profound official response comes from the very heart of the report: the amplified voice of people living with epilepsy. By placing their experiences, priorities, and insights at the forefront of global policy discussions, the IBE has achieved a significant milestone. This approach not only lends moral authority to the recommendations but also ensures that future policies are truly responsive to the real-world needs and challenges of the community they aim to serve. It’s a powerful statement that those directly affected are best positioned to guide the solutions.

Broader Implications: A New Era for Epilepsy Advocacy and Global Health

The launch of the IBE Policy Advocacy Report signals a new and invigorated era for epilepsy advocacy, with profound implications for global health, human rights, and sustainable development.

Advancing Human Rights and Social Justice

By framing epilepsy as a human rights issue, the report challenges governments and societies to confront systemic discrimination and uphold the fundamental rights of individuals with epilepsy. This includes the right to health, education, employment, and non-discrimination. The report provides the evidence base needed to advocate for legal reforms, anti-stigma campaigns, and inclusive policies that ensure social justice for this often-marginalized population. It shifts the narrative from a purely medical condition to one that demands societal responsibility and accountability.

Catalysing Sustainable Development Goals

The report’s comprehensive approach aligns seamlessly with several of the United Nations’ Sustainable Development Goals (SDGs). Improving epilepsy care and support directly contributes to SDG 3: Good Health and Well-being. By addressing educational barriers, it supports SDG 4: Quality Education. Advocating for equitable employment opportunities contributes to SDG 8: Decent Work and Economic Growth. Critically, by combating stigma and discrimination, it directly addresses SDG 10: Reduced Inequalities. The report provides a concrete pathway for nations to demonstrate progress towards these vital global objectives through targeted action on epilepsy.

A Roadmap for Global Implementation

The report is more than just a declaration; it is a practical, actionable roadmap. For national governments, it offers a template for developing robust national epilepsy plans. For healthcare and research leaders, it highlights priorities for investment and innovation. For advocates and civil society organisations, it provides a powerful evidence base and clear policy goals to inform their advocacy efforts. Its detailed recommendations serve as a practical guide for implementation, breaking down complex challenges into manageable, measurable actions.

The Role of Partnerships and Collaboration

The collaborative nature of the report’s launch—involving WHO Non-State Actors, the One Neurology initiative, and national governments—underscores the indispensable role of multi-stakeholder partnerships. Effective implementation of the report’s recommendations will require sustained collaboration between international bodies, national health ministries, civil society, patient organizations, academia, and the private sector. This collective action is crucial for pooling resources, sharing expertise, and creating a unified front against the challenges posed by epilepsy.

Measuring Progress and Future Outlook

The IBE report also implicitly lays the groundwork for future monitoring and evaluation. By outlining clear policy priorities and recommendations, it establishes benchmarks against which progress can be measured. Future iterations of the GENS study, or similar data collection initiatives, can track the impact of implemented policies, identify persistent gaps, and inform adaptive strategies. This iterative approach ensures that advocacy remains dynamic, evidence-based, and responsive to the evolving needs of the epilepsy community. The ultimate goal is to move beyond the current disparities and achieve a future where people with epilepsy live free from stigma, have access to comprehensive care, and can participate fully and equally in all aspects of society.

Conclusion

The launch of the International Bureau for Epilepsy’s Policy Advocacy Report at the 79th World Health Assembly represents a watershed moment for the global epilepsy community. By meticulously gathering and amplifying the lived experiences of thousands, the report offers an unparalleled evidence base for policy reform and implementation. It transcends traditional medical perspectives, repositioning epilepsy as a critical issue of human rights, social justice, and sustainable development.

As Donna Walsh rightly emphasized, the true measure of its success will lie in its ability to translate global frameworks into meaningful improvements in everyday life. This comprehensive document serves not just as a report, but as a powerful catalyst and a practical roadmap for governments, healthcare systems, and civil society worldwide. With its ten global policy priorities, informed by authentic voices and rigorous data, the IBE has charted a clear course towards a more inclusive, equitable, and supportive future for everyone living with epilepsy. The call to action is clear, and the imperative for collective, sustained effort has never been stronger.