A Unified Call for Action: Landmark Publication Ignites Momentum for a National Plan for Epilepsy

WASHINGTON D.C. – August 25th, 2026 – In a pivotal moment for the millions of Americans living with epilepsy, Epilepsy Alliance America (EAA) today announced the publication of a landmark article in the esteemed journal, Epilepsy Currents. Titled "Advancing a National Plan for Epilepsy: A Unified Call for Coordinated Action to Transform Care and Outcomes," the paper lays bare the persistent challenges faced by the epilepsy community and champions an urgent, coordinated national strategy to revolutionize research, awareness, and patient care.

The article, a culmination of extensive collaborative efforts across the nation’s leading epilepsy organizations, underscores a critical reality: despite affecting an estimated 3.4 million Americans, epilepsy continues to suffer from significant disparities in research funding, public understanding, and equitable access to optimal medical care. The authors argue compellingly that only through a comprehensive, federally recognized National Plan for Epilepsy can these systemic gaps be effectively bridged, ultimately improving the lives of patients and their families nationwide.

"This publication isn’t just an academic exercise; it’s a powerful statement from a united community demanding change," stated Dr. Eleanor Vance, CEO of Epilepsy Alliance America. "For too long, epilepsy has been a condition understood in silos, lacking the cohesive national strategy seen for other prevalent neurological disorders. Our article in Epilepsy Currents serves as a clarion call, consolidating years of advocacy and expert consensus into a definitive roadmap for action."

The paper, co-authored by prominent figures within the epilepsy landscape, including EAA Board members Amanda Mitchell, MPH, LCCE, and Joyce Bender, represents the collective voice of a broad coalition. This collaborative includes CURE Epilepsy, the American Epilepsy Society, Epilepsies Action Network, Epilepsy Foundation, National Association of Epilepsy Centers (NAEC), Rare Epilepsy Network (REN), International League for Epilepsy, and The Epilepsy Leadership Council. Together, these organizations are committed to leveraging this publication to galvanize policymakers, healthcare providers, and the public towards the realization of a robust National Plan.

Table of Contents

The Imperative for a National Plan: Main Facts

Epilepsy, a chronic neurological disorder characterized by recurrent, unprovoked seizures, affects individuals of all ages, races, and socioeconomic backgrounds. The sheer scale of its impact – 3.4 million Americans and approximately 65 million people worldwide – demands a level of national attention and resource allocation that, until now, has been largely absent. The article in Epilepsy Currents meticulously outlines the multifaceted challenges that necessitate a comprehensive national approach:

Firstly, underfunding in research remains a critical barrier. Compared to other neurological conditions with similar or even lower prevalence, epilepsy research receives disproportionately less federal funding. This disparity hinders breakthroughs in understanding the diverse etiologies of epilepsy, developing more effective and personalized treatments, and ultimately finding a cure. The article highlights the urgent need for increased investment in basic science, translational research, clinical trials, and population health studies specific to epilepsy.

Secondly, pervasive lack of awareness and persistent stigma surrounding epilepsy continues to impact patients’ quality of life, access to education and employment, and overall societal integration. Misconceptions about seizures, fear, and discrimination are still rampant, often leading to delayed diagnosis, social isolation, and mental health challenges for individuals with epilepsy. A national plan would aim to dismantle these barriers through targeted public education campaigns and healthcare provider training.

Thirdly, significant disparities in access to optimal care leave many individuals without the specialized treatment they need. Geographic limitations, insurance barriers, and a shortage of neurologists and epileptologists, particularly in rural and underserved areas, mean that not all patients can access comprehensive epilepsy centers, advanced diagnostic tools, or state-of-the-art therapeutic interventions like epilepsy surgery or neuromodulation devices. The publication advocates for strategies to expand access to specialized care, improve emergency response protocols for seizures, and enhance primary care provider education on epilepsy management.

The collaborative’s publication serves as a unified framework, identifying core consensus priorities that must form the bedrock of any successful national strategy. These priorities, detailed further on the epilepsy-national-plan.org website, encompass a broad spectrum from accelerating research and improving surveillance to enhancing access to care and empowering individuals and families. The timing of this article, released in mid-2026, marks a crucial inflection point, aiming to capitalize on growing recognition within healthcare and policy circles for more coordinated efforts in addressing chronic neurological conditions.

A Journey Towards Consensus: Chronology of the National Plan Advocacy

The call for a National Plan for Epilepsy is not a sudden emergence but the culmination of years, even decades, of dedicated advocacy and collaborative groundwork. The publication in Epilepsy Currents is a significant milestone in a long and deliberate journey.

The seeds of this national effort were arguably sown in the late 1990s and early 2000s, as individual epilepsy organizations began to recognize the limitations of siloed advocacy. Early discussions among leaders of groups like the Epilepsy Foundation and the American Epilepsy Society often revolved around the fragmented nature of funding and care. While individual organizations achieved notable successes in their specific missions – for example, CURE Epilepsy’s focus on research or NAEC’s accreditation of specialized centers – the broader impact on the epilepsy population remained constrained without a unified national vision.

A more formalized movement began to take shape in the early 2010s. Informal working groups, often initiated by The Epilepsy Leadership Council, started meeting to explore common priorities. These early gatherings identified the critical need for a comprehensive framework that could transcend organizational boundaries and present a united front to policymakers and funders. The model of successful national plans for other diseases, such as cancer or HIV/AIDS, served as inspiration, demonstrating the transformative power of coordinated strategies.

By 2018-2019, these discussions matured into a concrete initiative. A series of consensus-building workshops were convened, bringing together researchers, clinicians, patient advocates, and industry representatives. These workshops, often hosted by partners like the Rare Epilepsy Network (REN) to ensure inclusion of diverse perspectives, focused on identifying shared challenges and developing actionable priorities. This period saw the drafting of foundational white papers outlining the scope and objectives of a potential national plan.

The collaborative behind the current publication formally coalesced around 2020, solidifying a commitment to drive this initiative forward. This powerful alliance of diverse organizations, each bringing unique strengths and perspectives, began to articulate specific legislative and policy recommendations. They engaged with congressional leaders, presented at health policy forums, and launched public awareness campaigns to highlight the urgency of the issue.

A significant step was the establishment of the dedicated website, epilepsy-national-plan.org, in late 2023, serving as a central hub for information, consensus priorities, and endorsing organizations. This platform allowed for broader community engagement and demonstrated the growing momentum behind the initiative. The drafting of the Epilepsy Currents article began in earnest in early 2025, synthesizing the collective knowledge, data, and advocacy points developed over the preceding years into a peer-reviewed academic publication. Its acceptance and release in August 2026 signify not just a research achievement, but a powerful validation of the years of strategic planning and collaboration, providing undeniable evidence for the need for national action.

Amanda Mitchell, MPH, LCCE, an EAA Board member and co-author, reflected on this journey: "Watching this collaborative grow from passionate discussions to a unified force has been incredibly rewarding. This publication isn’t an end-point; it’s a launchpad. It validates our collective vision and provides the scientific underpinning needed to move the National Plan from concept to reality."

Illuminating the Gaps: Supporting Data for a National Plan

The article’s call for a National Plan for Epilepsy is not based on conjecture but on a substantial body of evidence highlighting critical deficiencies across the spectrum of epilepsy care and research. The 3.4 million Americans living with epilepsy face stark realities that demand systemic change.

Research Funding Disparities: A critical piece of supporting data revolves around the disproportionate allocation of research funding. Analysis presented in the Epilepsy Currents article, drawing on data from the National Institutes of Health (NIH), reveals that epilepsy research consistently receives less funding per affected individual compared to many other neurological conditions. For instance, while Alzheimer’s disease and Parkinson’s disease, though equally devastating, often receive significantly higher per-patient funding, epilepsy, with its complex etiologies and varied presentations, struggles for equitable investment. This gap directly impedes progress in areas such as:

Precision Medicine: Research into genetic and molecular biomarkers to tailor treatments to individual patients.

Seizure Prediction and Prevention: Development of advanced technologies for real-time seizure forecasting and intervention.

Comorbidity Management: Understanding and addressing the high prevalence of co-occurring conditions like depression, anxiety, and cognitive impairment.

Non-pharmacological Therapies: Advancements in epilepsy surgery, dietary therapies, and neurostimulation techniques.

Awareness and Stigma: Public awareness campaigns, while increasing, have not fully eradicated the pervasive stigma associated with epilepsy. Surveys cited in the article indicate that a significant portion of the public still holds misconceptions about epilepsy, such as believing it’s contagious or a sign of mental instability. This lack of understanding translates into real-world consequences:

Employment Discrimination: Individuals with epilepsy often face challenges in securing and maintaining employment due to unfounded fears or lack of accommodation.
Educational Barriers: Students with epilepsy may encounter difficulties in school settings if educators are not adequately trained to respond to seizures or accommodate their needs.
Social Isolation: The fear of public seizures and societal judgment can lead to withdrawal and loneliness for many patients.

Access to Optimal Care: Perhaps one of the most pressing issues is the significant disparity in access to specialized epilepsy care. The article highlights several key areas:

Geographic Gaps: A severe shortage of epileptologists and comprehensive epilepsy centers exists outside major metropolitan areas. Patients in rural communities often have to travel hundreds of miles, delaying diagnosis and access to advanced treatments.
Insurance Barriers: Restrictive insurance policies can limit access to crucial diagnostic tests (e.g., long-term video-EEG monitoring), specialized medications, and high-cost procedures like epilepsy surgery.
Diagnostic Delays: The average time from initial seizure onset to definitive diagnosis and appropriate treatment can be prolonged, leading to unnecessary suffering and increased risk of complications.
Emergency Response: Many first responders, school personnel, and even some healthcare professionals lack adequate training in seizure first aid, potentially leading to improper intervention or avoidable emergency room visits.

Economic Burden: The economic toll of epilepsy is substantial, impacting individuals, families, and the healthcare system. The article references recent economic impact studies that estimate the direct and indirect costs of epilepsy in the U.S. to be in the tens of billions of dollars annually. These costs include medical expenditures, lost productivity due to disability, and caregiver burden. A national plan that improves diagnosis, optimizes treatment, and enhances quality of life could significantly reduce these economic burdens.

Joyce Bender, an EAA Board member and co-author, emphasized the human cost: "Behind every statistic is a person, a family grappling with the unpredictable nature of epilepsy. The data isn’t just numbers; it’s a testament to the daily struggles and the unmet needs that a National Plan is designed to address."

Voices for Change: Official Responses and Endorsements

The release of "Advancing a National Plan for Epilepsy" has been met with resounding support from across the epilepsy community and beyond, amplifying the urgent call for action.

Dr. Vance, CEO of Epilepsy Alliance America, reiterated the organization’s unwavering commitment: "This publication encapsulates the collective wisdom and tireless efforts of an entire community. We are incredibly proud of Amanda Mitchell and Joyce Bender, whose dedication as co-authors exemplifies the patient-centric leadership of our board. EAA stands ready to work with all stakeholders to translate these consensus priorities into tangible policy and programmatic changes that will benefit every person living with epilepsy."

Leaders from the collaborative partners also voiced their strong endorsement. Dr. Robert Fisher, President of the American Epilepsy Society, stated, "The AES has long championed advancements in clinical care and research. This article provides a compelling, evidence-based argument for a national strategy that aligns perfectly with our mission to promote the prevention, treatment, and cure of epilepsy through research, education, and advocacy. We believe a National Plan is essential for fostering innovation and ensuring access to cutting-edge care."

Brandy Fureman, Ph.D., Chief Science Officer at CURE Epilepsy, commented, "CURE Epilepsy has been at the forefront of funding groundbreaking research. This unified call for a National Plan will be instrumental in attracting the sustained federal investment required to accelerate the pace of discovery and move us closer to a cure. We fully endorse the article’s emphasis on robust, coordinated research initiatives."

From the Epilepsy Foundation, Chief Medical Officer Dr. Jacqueline French, added, "For decades, the Epilepsy Foundation has been dedicated to improving the lives of people with epilepsy. This Epilepsy Currents publication provides the comprehensive framework needed to elevate epilepsy on the national health agenda, addressing critical issues from public education to access to specialized care. We are energized by this collaborative effort and committed to seeing a National Plan implemented."

Patient advocacy groups also weighed in. "As a network dedicated to rare epilepsies, REN sees firsthand the challenges faced by families navigating complex diagnoses and limited treatment options," said Dr. Tracy Dixon-Salazar, Executive Director of the Rare Epilepsy Network. "A National Plan that recognizes the diversity of epilepsies and ensures equitable access to specialized resources, including genetic testing and tailored therapies, is absolutely vital. This article is a huge step forward."

While no formal legislative action has yet been announced following the publication, early indications from Capitol Hill are cautiously optimistic. A spokesperson for Senator Patricia Jenkins (D-NY), a known advocate for neurological health funding, remarked, "Senator Jenkins commends the collaborative efforts of the epilepsy community in articulating a clear vision for improving patient outcomes. We are actively reviewing the recommendations presented in Epilepsy Currents and look forward to engaging with stakeholders to explore viable legislative pathways for a comprehensive national strategy." This suggests a growing receptiveness among key policymakers to address the challenges outlined in the publication.

The consensus priorities and a full list of endorsing organizations from within and outside the epilepsy community can be found at www.epilepsy-national-plan.org/consensus-priorities, demonstrating the broad-based support for this initiative.

Paving the Way Forward: Implications of a National Plan

The implications of successfully establishing and implementing a National Plan for Epilepsy are profound and far-reaching, promising a transformative shift in how epilepsy is understood, treated, and managed in the United States.

Improved Patient Outcomes and Quality of Life: At its core, a National Plan aims to significantly enhance the lives of the 3.4 million Americans affected by epilepsy. This means:

Earlier and More Accurate Diagnosis: Standardized diagnostic protocols and improved physician education will reduce diagnostic delays, allowing for prompt and effective intervention.
Enhanced Access to Optimal Care: Initiatives to expand comprehensive epilepsy centers, increase the number of specialized neurologists, and address insurance barriers will ensure more patients receive the right treatment at the right time, potentially leading to better seizure control and reduced comorbidities.
Reduced Stigma and Increased Integration: National awareness campaigns will educate the public, dismantle misconceptions, and foster a more inclusive society where individuals with epilepsy can participate fully without fear of discrimination in schools, workplaces, and social settings.
Better Management of Comorbidities: A coordinated approach will emphasize screening and treatment for co-occurring mental health conditions and cognitive impairments, addressing the whole person, not just the seizures.

Accelerated Research and Discovery: A dedicated national plan would usher in an era of unprecedented research collaboration and funding. By establishing clear research priorities and fostering cross-institutional partnerships, it would:

Drive Breakthroughs: Increased and sustained funding would accelerate the discovery of new therapies, diagnostic tools, and ultimately, preventative strategies and cures.
Promote Data Sharing: A national infrastructure for data collection and sharing would enable researchers to leverage larger datasets, leading to more robust findings and faster translation of research into clinical practice.
Foster Innovation: Grant programs specifically targeting unmet needs in epilepsy research would encourage innovative approaches in areas like genetics, neuroimaging, and advanced neurotechnologies.

Economic Benefits: While requiring initial investment, a well-executed National Plan for Epilepsy is expected to yield significant long-term economic benefits. By improving seizure control and overall health, it would lead to:

Reduced Healthcare Costs: Fewer emergency room visits, hospitalizations, and long-term care needs due to better disease management.
Increased Productivity: Empowering individuals with epilepsy to achieve greater educational and employment success, contributing more fully to the workforce.
Reduced Caregiver Burden: Supporting families and caregivers through better access to resources and support services, alleviating the indirect costs associated with caregiving.

Strengthened Advocacy and Policy: The very existence of a National Plan would solidify epilepsy’s position on the national health agenda, ensuring sustained attention and resource allocation from federal agencies and policymakers. It would create a unified voice for the epilepsy community, enabling more effective advocacy for legislative changes and public health initiatives.

The publication in Epilepsy Currents is a pivotal moment, transforming years of dedicated effort into a powerful, academically validated call to action. As Dr. Vance concluded, "The time for a National Plan for Epilepsy is now. This article provides the blueprint, and the collaborative stands ready to work with all stakeholders to build a future where epilepsy no longer dictates the lives of millions, but is a manageable, and ultimately, curable condition." The next phase involves sustained advocacy, engagement with policymakers, and continued public education to ensure that this unified vision becomes a tangible reality for every American living with epilepsy.