A Historic Leap Forward for Millions: Senate Unanimously Passes National Plan for Epilepsy Act

Washington D.C. – August 11, 2026 – In a monumental triumph for the epilepsy community, the U.S. Senate unanimously passed the National Plan for Epilepsy Act (S. 494) on August 4, 2026. This landmark legislative action, celebrated by Epilepsy Alliance America, marks a watershed moment in the decades-long struggle for comprehensive, coordinated support for the millions of Americans living with epilepsy. The Act sets the stage for the creation of an integrated national strategy aimed at revolutionizing epilepsy care, accelerating crucial research, dramatically reducing epilepsy-related deaths, and significantly enhancing the overall quality of life for individuals and families impacted by this complex neurological condition.

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The passage of S. 494 is not merely a legislative formality; it is the culmination of years of unwavering dedication, tireless advocacy, and shared purpose by a diverse coalition. People with epilepsy, their families, devoted caregivers, pioneering healthcare professionals, groundbreaking researchers, and a multitude of epilepsy organizations across the nation have collectively worked to elevate the needs and voices of a community often overlooked. Their persistent efforts have transformed an urgent plea into a tangible promise of federal action, demonstrating the profound power of grassroots engagement in shaping national policy.

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Main Facts: A Comprehensive Blueprint for Change

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The National Plan for Epilepsy Act represents a fundamental shift in the federal government’s approach to epilepsy, moving from a fragmented collection of initiatives to a unified, strategic framework. Its core purpose is to establish a robust and enduring national response that addresses the multifaceted challenges associated with epilepsy.

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Unanimous Congressional Support: A Testament to Urgency

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The unanimous vote in the Senate for S. 494 underscores a rare bipartisan consensus on the critical need to address epilepsy as a public health priority. Such unified support is a powerful indicator of the widespread recognition of epilepsy’s profound impact and the imperative for a coordinated national strategy. It signifies that legislators from across the political spectrum acknowledge the severity of the condition, the gaps in current care, and the potential for a federal plan to drive meaningful improvements. This resounding endorsement sends a clear message that the well-being of the epilepsy community is a shared national responsibility, transcending political divides and prioritizing human health.

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Core Objectives of S. 494: Pillars of Progress

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The legislation is meticulously designed around several ambitious, interconnected objectives, each vital to transforming the landscape of epilepsy care and research:

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• Coordinated National Strategy: At its heart, the Act mandates the development of a coherent, national strategy for epilepsy. Historically, efforts to combat epilepsy have often been disparate, leading to inefficiencies and unequal access to resources. This plan aims to integrate existing programs, identify overlaps and deficiencies, and foster collaboration across federal agencies, research institutions, healthcare providers, and community organizations. The goal is to create a seamless ecosystem of support that ensures consistency in care standards, research priorities, and public health initiatives nationwide.

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• Improved Care and Research: The Act seeks to dramatically enhance both the quality of care available to individuals with epilepsy and the pace of scientific discovery. In terms of care, this includes promoting early and accurate diagnosis, expanding access to specialized epilepsy centers, advancing treatment protocols for drug-resistant epilepsy, and integrating mental health support. On the research front, the plan will prioritize funding for critical areas such as identifying new therapeutic targets, developing precision medicine approaches, understanding the genetic underpinnings of epilepsy, and exploring non-pharmacological interventions like neurostimulation and dietary therapies.

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• Reducing Epilepsy-Related Deaths (SUDEP): One of the most devastating and often under-recognized aspects of epilepsy is the risk of Sudden Unexpected Death in Epilepsy (SUDEP). The National Plan explicitly targets a reduction in epilepsy-related deaths, including SUDEP. This involves increasing awareness among patients and healthcare providers about SUDEP risks and prevention strategies, fostering research into its causes and predictive biomarkers, and improving monitoring technologies. A dedicated focus on this critical area has the potential to save lives and alleviate immense grief for families.

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• Enhancing Quality of Life: Beyond seizure control, living with epilepsy often involves significant challenges related to stigma, mental health comorbidities, educational and employment barriers, and concerns about personal safety and independence. The Act emphasizes improving the overall quality of life for individuals with epilepsy by addressing these broader psychosocial and economic factors. This includes promoting public awareness campaigns to combat stigma, advocating for inclusive policies in education and employment, and ensuring access to supportive services that empower individuals to live full, productive lives.

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Federal Mandate for Action: Review, Identify, Recommend

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A cornerstone of S. 494 is its requirement for the federal government to undertake a comprehensive review of all existing epilepsy programs and initiatives. This critical assessment will identify gaps in services, highlight disparities in outcomes across different populations, and pinpoint unmet needs within the epilepsy community. Based on this thorough evaluation, the government will be mandated to develop actionable recommendations to address these identified deficiencies. The National Plan’s focus areas – research, diagnosis, treatment, awareness, mortality prevention, and quality of life – provide a structured framework for this analysis, ensuring that all crucial aspects of epilepsy are systematically examined and improved.

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Inclusivity and Lived Experience: At the Heart of the Plan

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Crucially, the legislation mandates ongoing input from those most directly affected by epilepsy. People with lived experience, including patients and their families, will have a seat at the table, alongside healthcare providers, researchers, advocates, and representatives from federal agencies. This commitment to incorporating diverse perspectives ensures that the National Plan is not just a theoretical construct but a practical, empathetic, and truly effective strategy that reflects the real-world needs and challenges faced by the epilepsy community. This inclusive approach is vital for developing policies that are relevant, responsive, and ultimately successful in improving outcomes.

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Chronology of Advocacy and Legislative Progress

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The journey to the Senate’s unanimous vote on S. 494 has been a long and arduous one, paved by the persistent efforts of countless individuals and organizations. It represents a powerful testament to the enduring spirit of advocacy.

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Years of Grassroots Endeavor: A Community United

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The seeds of the National Plan for Epilepsy Act were sown years ago through the dedicated and often personal advocacy of the epilepsy community. Individuals living with epilepsy, their parents, siblings, and spouses have shared poignant personal stories with elected officials, illustrating the daily struggles, the unmet medical needs, and the societal barriers they face. These grassroots efforts involved countless meetings with congressional staff, signing support letters, participating in advocacy days on Capitol Hill, and raising awareness in their local communities. Organizations like Epilepsy Alliance America have played a pivotal role in galvanizing these efforts, providing platforms for collective action and expert guidance. Earlier this year, this collective wisdom culminated in the drafting of "The Epilepsy Community Consensus Priorities," a foundational document that articulated the community’s vision for a national plan, directly influencing the framework of S. 494. This sustained, unified voice proved instrumental in building momentum and garnering bipartisan support.

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The Legislative Journey: From Concept to Senate Passage

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The formal legislative journey of the National Plan for Epilepsy Act began with its introduction in the Senate. Senators Eric Schmitt (R-MO) and Amy Klobuchar (D-MN) emerged as key bipartisan champions, demonstrating commendable leadership in sponsoring and shepherding S. 494 through the complex legislative process. Their commitment reflected a deep understanding of the challenges faced by the epilepsy community and a shared vision for a more effective national response.

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A crucial milestone occurred on July 22, 2026, when the Senate Health, Education, Labor and Pensions (HELP) Committee approved a Manager’s Amendment to the bill. A Manager’s Amendment is typically a comprehensive amendment offered by the committee chairman or another designated manager to make substantial changes to the bill. In this instance, the amendment was carefully crafted to preserve the core purpose and intent of S. 494 while strengthening its framework. This involved refining language, clarifying responsibilities for federal agencies, potentially adding specific reporting requirements, and further solidifying mechanisms for stakeholder input. The committee’s approval signaled strong support within a key oversight body, paving the way for a full Senate vote.

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The culmination of these efforts arrived on August 4, 2026, when the National Plan for Epilepsy Act was brought to the Senate floor. The unanimous passage on this date marked a celebratory moment, a testament to the legislative skill of its sponsors and the relentless advocacy that underpinned its journey. The vote represented a powerful validation of the community’s needs and a clear mandate for federal action.

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The Road Ahead: House Consideration and Final Enactment

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Despite the momentous Senate victory, the work for the epilepsy community is far from over. For S. 494 to become law, it must now be passed by the U.S. House of Representatives and then signed by the President. This requires continued vigilance and advocacy to ensure the bill gains traction and support in the House. Key congressional champions in the House of Representatives, including Representatives Jim Costa (D-CA-21) and Greg Murphy, M.D. (R-NC-3), are already working to build support and guide the legislation through the House’s committee process and onto the floor for a vote. The urgency is paramount, as the epilepsy community and its allies aim to secure passage before the end of the current Congressional term, capitalizing on the momentum generated by the Senate’s unanimous approval.

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Supporting Data: The Unspoken Urgency

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The need for a National Plan for Epilepsy is underscored by compelling data that illustrates the pervasive reach and profound impact of this neurological disorder on American society.

The Scope of Epilepsy in America: A Widespread Challenge

Epilepsy is one of the most common neurological conditions globally, and its prevalence in the United States is staggering. It is estimated that approximately 3.4 million Americans, including 470,000 children, live with active epilepsy. This means that roughly 1 in 26 people will develop epilepsy at some point in their lives. The incidence of new cases remains significant, with tens of thousands of new diagnoses each year. These statistics paint a clear picture: epilepsy is not a rare condition; it is a widespread public health challenge affecting millions of individuals and their families across every demographic.

Economic and Social Burden: Far-Reaching Consequences

The impact of epilepsy extends far beyond the medical realm, imposing substantial economic and social burdens:

• Healthcare Costs: The direct and indirect healthcare costs associated with epilepsy are enormous. Direct medical costs include expenses for hospitalizations, physician visits, anti-seizure medications, diagnostic tests, and emergency care. Indirect costs encompass lost productivity due to seizures, disability, and premature mortality. Estimates place the annual economic burden of epilepsy in the U.S. in the tens of billions of dollars, a figure that highlights the significant strain on both individual families and the national healthcare system.
• Productivity Loss: Epilepsy often significantly impacts an individual’s ability to maintain consistent employment or pursue educational opportunities. Seizures can lead to job loss, difficulty in securing new employment, and limitations on driving, all of which contribute to reduced income and economic instability. Children with epilepsy may face academic challenges, requiring specialized support and impacting their long-term educational attainment.
• Mental Health Comorbidities: The psychological toll of living with epilepsy is substantial. Depression, anxiety, and other mood disorders are highly prevalent among individuals with epilepsy, often exceeding rates in the general population. The unpredictable nature of seizures, the associated stigma, and the challenges of managing a chronic condition contribute significantly to these mental health comorbidities, which in turn can impact treatment adherence and overall quality of life.
• Stigma and Discrimination: Despite its prevalence, epilepsy remains widely misunderstood, leading to pervasive stigma and discrimination. Individuals with epilepsy often face social isolation, prejudice in workplaces, and misconceptions in educational settings. This stigma can lead to delays in seeking diagnosis, reluctance to disclose the condition, and psychological distress, further exacerbating the challenges of living with epilepsy.

Gaps in Current Care and Research: Urgent Areas for Improvement

Despite advances in treatment, significant gaps persist in current epilepsy care and research, which the National Plan aims to address:

• Lack of Access to Specialized Care: Many individuals, particularly those in rural areas or underserved communities, lack access to specialized epilepsy centers or neurologists with expertise in epilepsy. This can lead to delayed diagnosis, suboptimal treatment, and poorer outcomes.
• Disparities in Care: Racial, ethnic, and socioeconomic disparities in epilepsy care are well-documented, leading to unequal access to effective treatments, higher rates of complications, and poorer health outcomes for certain populations.
• Insufficient Funding for Specific Research Areas: While general epilepsy research receives funding, specific critical areas remain underfunded. These include research into drug-resistant epilepsy (which affects about one-third of patients), the underlying mechanisms of SUDEP, the development of non-pharmacological therapies, and precision medicine approaches tailored to individual patients.
• Limited Public Awareness and Education: A lack of widespread public understanding about epilepsy contributes to stigma, delays in emergency response during seizures, and inadequate support systems.

Mortality and SUDEP: A Silent Crisis

SUDEP is a tragically common cause of death in people with epilepsy, accounting for thousands of deaths annually. It is defined as the sudden, unexpected, non-traumatic, and non-drowning death in individuals with epilepsy, with or without evidence of a seizure, and in whom a postmortem examination does not reveal a toxicological or anatomical cause of death. The risk of SUDEP is significantly higher in individuals with frequent generalized tonic-clonic seizures. Despite its prevalence, awareness of SUDEP among both patients and healthcare providers remains alarmingly low. The National Plan’s dedicated focus on reducing epilepsy-related deaths, including SUDEP, is a critical step towards illuminating this silent crisis, fostering preventive measures, and accelerating research into its causes and potential interventions.

Official Responses and Community Voices

The Senate’s passage of S. 494 has elicited strong reactions of gratitude, determination, and hope from the epilepsy community and its leading advocates.

Epilepsy Alliance America’s Leadership: Gratitude and Resolve

Liza Gundell, Board Chair of Epilepsy Alliance America, articulated the profound appreciation for the legislative breakthrough. "We are grateful to Senators Eric Schmitt and Amy Klobuchar for their bipartisan leadership and commitment to improving the lives of people affected by epilepsy," Gundell stated. She further emphasized, "The Senate’s unanimous support demonstrates a growing recognition that epilepsy deserves a coordinated national response. For too many individuals and families, epilepsy brings challenges that extend far beyond seizures, including barriers to care, stigma, financial burdens, and concerns about safety and quality of life. A National Plan for Epilepsy will help ensure that these challenges are addressed through a thoughtful, comprehensive, and collaborative strategy." Gundell’s remarks highlight the multifaceted nature of epilepsy, underscoring that effective intervention must extend beyond seizure management to encompass the broader social, psychological, and economic determinants of health.

Echoing this sentiment, Lisa Gallipoli, Executive Director of Epilepsy Alliance America, conveyed a powerful message of continued resolve. "The passage by the Senate of the National Plan for Epilepsy is a great achievement; but our work is not done!," Gallipoli asserted. Her statement reflects a pragmatic understanding that legislative victory is a step, not the finish line. "Epilepsy Alliance America is proud to be part of the greater epilepsy community, speaking and acting in one shared voice, about the National Plan for Epilepsy. We will continue to mobilize our network to ensure that the House of Representatives follows the lead of the Senate before the end of the Congressional term." Gallipoli’s call to action reinforces the organization’s commitment to sustained advocacy and the critical need for continued community engagement to secure the bill’s final enactment.

Congressional Champions Speak Out: A Bipartisan Commitment

While direct quotes from Senators Schmitt and Klobuchar were not provided in the original text, their bipartisan leadership speaks volumes. Their collaboration on S. 494 exemplifies how critical public health issues can unite legislators across party lines. Their commitment to this cause likely stemmed from a combination of personal understanding, constituent advocacy, and a recognition of the significant public health imperative. Their efforts to build consensus and navigate the legislative landscape were crucial in securing the unanimous Senate vote. Similarly, Representatives Jim Costa and Greg Murphy, M.D., serving as champions in the House, embody the ongoing bipartisan commitment required to propel this vital legislation across the finish line. Their roles will be instrumental in ensuring the bill receives proper consideration and ultimately, a successful vote in the House.

The Personal Perspective: Amanda Mitchell, MPH, A Voice from Lived Experience

The deeply personal dimension of the advocacy efforts was powerfully articulated by Amanda Mitchell, MPH, an Epilepsy Alliance America Board member and a member of the National Plan for Epilepsy Committee. As the parent of a child with epilepsy, Mitchell’s statement resonated with the experiences of countless families. "As the parent of a child with epilepsy, advocating for the National Plan for Epilepsy is deeply personal to me. I know just how desperately our community needs the investments in comprehensive research, effective treatments, improved access to care, and increased support," she shared. Mitchell’s involvement in drafting "The Epilepsy Community Consensus Priorities" earlier this year further underscores her dedication to ensuring that the plan is informed by direct experience. "It has been a privilege to add my voice to those in the epilepsy community who have pushed for this change for many years. I look forward to continuing to support this work until the plan is enacted into law, and we see its benefits for the millions of Americans living with epilepsy," she concluded. Her testimony provides a poignant reminder of the human stakes involved and the profound impact this legislation promises to have on daily lives.

Implications for the Future of Epilepsy Care

The passage of the National Plan for Epilepsy Act by the Senate carries profound implications, signaling a new era for epilepsy care and research in the United States.

A Paradigm Shift in Federal Approach: From Fragmentation to Integration

This legislation represents a fundamental paradigm shift in how the federal government addresses epilepsy. Historically, efforts have often been siloed, with various agencies and programs operating independently. The Act mandates a move towards an integrated, proactive, and coordinated approach. This will lead to more efficient allocation of resources, better information sharing, and a more cohesive strategy for prevention, diagnosis, treatment, and support. This shift could serve as a model for addressing other chronic conditions that currently suffer from fragmented federal responses.

Potential Impact on Patients and Families: Tangible Improvements

The long-term benefits of a National Plan for Epilepsy for patients and families are potentially transformative:

• Improved Diagnosis and Treatment Pathways: A coordinated strategy could lead to standardized diagnostic protocols, reducing delays and misdiagnoses. It would also promote faster access to appropriate and effective treatments, including novel therapies for drug-resistant epilepsy.
• Enhanced Access to Specialists and Resources: The plan aims to address disparities in care by improving access to specialized epilepsy centers, neurologists, and comprehensive support services, potentially leveraging telehealth technologies to reach underserved populations.
• Reduced Stigma and Increased Awareness: Through national awareness campaigns and educational initiatives, the plan can significantly reduce the stigma associated with epilepsy, fostering greater understanding, acceptance, and support within communities. This would empower individuals with epilepsy to live more openly and confidently.
• Targeted Research Breakthroughs: By prioritizing specific research areas, the Act will accelerate the pace of scientific discovery, leading to a deeper understanding of epilepsy’s causes, the development of new and more effective treatments, and ultimately, a path towards prevention and cure.
• Better Quality of Life Outcomes: Addressing the broader social and psychological impacts of epilepsy, the plan aims to improve employment opportunities, educational attainment, mental health support, and overall independence, allowing individuals with epilepsy to achieve their full potential.

Setting a Precedent for Other Chronic Conditions: A Model for Action

The comprehensive and inclusive framework of the National Plan for Epilepsy Act could establish a crucial precedent for how the U.S. government approaches other chronic and often underserved health conditions. By demonstrating the effectiveness of a coordinated national strategy, it might inspire similar legislative efforts for conditions that currently lack such integrated federal support, thereby benefiting a broader spectrum of patient communities.

The Path to Enactment and Implementation: Sustained Effort Required

While the Senate’s unanimous vote is a significant victory, the journey is not yet complete. The bill must now successfully navigate the House of Representatives and receive the President’s signature to become law. Even after enactment, the real work of implementation will begin, requiring sustained funding, robust oversight, and continued engagement from the epilepsy community. Epilepsy Alliance America, alongside its partners, will remain instrumental in advocating for adequate resources, monitoring the plan’s progress, and ensuring that its promise translates into tangible benefits for the millions of Americans living with epilepsy. This ongoing commitment will be crucial to realizing the full vision of the National Plan.

Take Action: Sustaining the Momentum

Momentum is undeniably building, but the work is not finished. The epilepsy community’s collective voice remains essential to secure the final passage of this historic legislation. Epilepsy Alliance America urges every individual invested in the future of epilepsy care to take immediate action. Contact your U.S. Representative today and ask them to cosponsor and unequivocally support the National Plan for Epilepsy Act. Your continued advocacy is vital to ensuring that this critical bill becomes law and transforms the lives of millions.

Take action today: Ask your U.S. Representative to support the National Plan for Epilepsy Act.
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