WASHINGTON, D.C. – August 11, 2026 – In a landmark legislative achievement, the U.S. Senate unanimously passed the National Plan for Epilepsy Act (S. 494) on August 4, 2026, marking a pivotal moment for the millions of Americans living with epilepsy. This historic vote, celebrated widely by patient advocacy groups, healthcare professionals, and researchers, paves the way for the creation of a comprehensive, coordinated national strategy aimed at revolutionizing epilepsy care, accelerating research breakthroughs, significantly reducing epilepsy-related deaths, and profoundly enhancing the quality of life for those affected by this complex neurological condition.

The unanimous support in the Senate underscores a growing, bipartisan recognition of epilepsy as a critical public health issue demanding a unified national response. This progress is the culmination of years of tireless advocacy, reflecting the unwavering dedication of individuals living with epilepsy, their families, caregivers, and a broad coalition of healthcare providers, researchers, and epilepsy organizations across the nation. Their collective voice has successfully elevated the urgent needs of the epilepsy community to the forefront of the national legislative agenda.

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A Decades-Long Battle: The Journey to Senate Passage

The journey to the Senate floor for the National Plan for Epilepsy Act has been a long and arduous one, built on the foundational efforts of a community determined to see systemic change. For decades, advocates have highlighted the fragmented nature of epilepsy care, the persistent gaps in research funding, and the significant social and economic burdens faced by individuals with epilepsy. The vision for a coordinated national strategy began to coalesce through grassroots initiatives and expert collaborations.

Early Advocacy and Consensus Building: The groundwork for S. 494 was laid through extensive community engagement and expert consultation. Early in 2026, the National Plan for Epilepsy Committee, comprising leading experts and individuals with lived experience, drafted "The Epilepsy Community Consensus Priorities." This crucial document outlined the key areas requiring federal attention – from enhancing research and improving diagnosis and treatment to fostering greater awareness and preventing epilepsy-related mortality. It served as a blueprint, articulating a shared vision for a more comprehensive and equitable approach to epilepsy.

Bipartisan Sponsorship and Committee Review: The legislative effort gained significant momentum with the bipartisan leadership of Senators Eric Schmitt and Amy Klobuchar, who championed the National Plan for Epilepsy Act. Their commitment to improving the lives of people affected by epilepsy was instrumental in navigating the complex legislative process. The bill, S. 494, was designed to mandate a thorough federal review of existing epilepsy programs, identify critical gaps in services and outcomes, and develop actionable recommendations to address unmet needs across the spectrum of epilepsy care and research.

On July 22, the Senate Health, Education, Labor and Pensions (HELP) Committee, responsible for legislation concerning health, education, labor, and pensions, meticulously reviewed the bill. During this session, a Manager’s Amendment was approved. This amendment, rather than altering the core intent of the legislation, served to strengthen its framework, refining the mechanisms through which the federal government would conduct its review and implement its recommendations. The HELP Committee’s approval marked a significant hurdle overcome, signaling the bill’s readiness for a full Senate vote.

Unanimous Senate Approval: The unanimous passage by the full Senate on August 4, 2026, stands as a powerful testament to the compelling case made by advocates and the undeniable need for this legislation. The absence of dissenting votes underscores the widespread understanding among senators regarding the urgency and importance of addressing epilepsy at a national level. This historic vote not only grants legitimacy to the long-standing demands of the epilepsy community but also sets a precedent for how critical health challenges can be tackled through collaborative, cross-party efforts.

Understanding the Unmet Need: The Landscape of Epilepsy in America

Epilepsy, a chronic neurological disorder characterized by recurrent, unprovoked seizures, affects approximately 3.4 million Americans, including 470,000 children. It is the fourth most common neurological disorder, yet it often remains misunderstood, underfunded, and stigmatized. The profound impact of epilepsy extends far beyond the seizures themselves, permeating every aspect of an individual’s life and posing significant challenges for families and the healthcare system.

Barriers to Care and Diagnosis: Many individuals with epilepsy face significant hurdles in accessing timely and appropriate medical care. These barriers include a shortage of specialized neurologists, particularly in rural and underserved areas, leading to delayed diagnoses and suboptimal treatment plans. Misdiagnosis is also common, delaying effective intervention and exacerbating the condition. Even when diagnosed, access to advanced diagnostic tools like prolonged video-EEG monitoring or specialized epilepsy centers can be limited by geographical location, insurance coverage, and financial constraints.

Stigma and Social Isolation: Despite its prevalence, epilepsy carries a persistent social stigma that can lead to discrimination in education, employment, and social interactions. Fear of having a seizure in public, misunderstandings about the condition, and outdated societal perceptions contribute to feelings of isolation and shame among those affected. This stigma can significantly impact mental health, leading to higher rates of depression and anxiety, and can discourage individuals from seeking necessary medical or social support.

Financial Burdens: The economic toll of epilepsy is substantial. Direct medical costs, including medication, doctor visits, hospitalizations, and emergency care, can be prohibitive. Many anti-seizure medications are expensive, and even with insurance, co-pays and deductibles can accumulate rapidly. Beyond direct costs, individuals with epilepsy often experience lost wages due to seizures, side effects from medication, or difficulty maintaining employment because of discriminatory practices or the unpredictable nature of their condition. Caregivers, too, often face reduced work hours or leave their jobs to provide full-time care, further straining family finances.

Mortality and Safety Concerns: Epilepsy is not just a chronic condition; it can also be life-threatening. Approximately 1 in 1,000 adults and 1 in 4,500 children with epilepsy die each year from Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP is the leading cause of death in people with refractory epilepsy, yet awareness among patients and even some healthcare providers remains alarmingly low. Beyond SUDEP, individuals with epilepsy are at an increased risk of injuries from falls during seizures, drowning, and other accidents. There is a desperate need for enhanced research into the causes and prevention of SUDEP, as well as improved safety protocols and awareness campaigns.

Gaps in Research and Holistic Support: While significant strides have been made in understanding epilepsy, critical gaps remain. The causes of many forms of epilepsy are still unknown, and current treatments fail to control seizures in about one-third of patients (known as drug-resistant epilepsy). Research into new therapies, personalized medicine approaches, and curative interventions is urgently needed. Furthermore, comprehensive care extends beyond seizure control to address comorbidities like depression, anxiety, cognitive impairment, and sleep disorders, which are highly prevalent in the epilepsy population. Existing federal programs often lack the coordination and breadth to address these multifaceted challenges holistically.

The confluence of these factors – fragmented care, pervasive stigma, significant financial strain, the threat of mortality, and persistent research gaps – underscores the critical importance and timeliness of the National Plan for Epilepsy Act. It represents a strategic imperative to unify efforts and resources to confront these challenges head-on.

Voices of Support and Determination

The passage of the National Plan for Epilepsy Act by the Senate has been met with an outpouring of gratitude and renewed determination from the epilepsy community. Leaders from Epilepsy Alliance America, a driving force behind the legislative effort, articulated both their appreciation for the progress made and their resolve for the work yet to be completed.

Liza Gundell, Board Chair of Epilepsy Alliance America, expressed profound appreciation for the bipartisan leadership that brought the bill to this crucial stage. "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 emphasized that the unanimous Senate support signifies a profound shift in how epilepsy is perceived at the national level. "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 words highlight the holistic vision of the plan, recognizing that effective epilepsy management requires more than just medical intervention; it demands a societal framework of support and understanding.

Lisa Gallipoli, Executive Director of Epilepsy Alliance America, while celebrating the achievement, underscored the continuing effort required to transform the bill into law. "The passage by the Senate of the National Plan for Epilepsy is a great achievement; but our work is not done!," Gallipoli declared emphatically. Her statement serves as a rallying cry, reminding the community that legislative victory is a process, not a singular event. "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 focus on collective action and the immediate goal of House passage reflects the strategic urgency facing advocates.

The deeply personal connection to the cause was eloquently conveyed by Amanda Mitchell, MPH, an Epilepsy Alliance America Board member and a key member of the National Plan for Epilepsy Committee. As the parent of a child with epilepsy, Mitchell’s advocacy is rooted in lived experience. "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," Mitchell shared. Her involvement in drafting "The Epilepsy Community Consensus Priorities" earlier in the year demonstrates her commitment to ensuring the plan is informed by real-world needs. "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 affirmed, articulating the long-term vision and profound hope that the plan represents for families like hers.

These powerful testimonies collectively paint a picture of an advocacy movement driven by both strategic acumen and profound personal commitment, united in the belief that a national plan for epilepsy is not merely beneficial, but essential.

Charting a New Course: Implications of the National Plan

If enacted into law, the National Plan for Epilepsy Act (S. 494) promises to usher in a new era for epilepsy care and research in the United States. Its implications are far-reaching, designed to create a cohesive federal approach where previously efforts were often disparate and uncoordinated.

Comprehensive Federal Review and Strategy Development: The core mandate of the legislation is to compel the federal government to undertake a rigorous review of all existing epilepsy-related programs and initiatives across various agencies. This will involve identifying redundancies, assessing efficacy, and, most critically, pinpointing gaps in services, research, and outcomes. Based on this comprehensive review, the government will be required to develop actionable recommendations to address unmet needs. This strategic planning will be dynamic, ensuring ongoing input from people with lived experience, healthcare providers, researchers, advocates, and relevant federal agencies, thereby guaranteeing that the plan remains patient-centric and responsive to evolving challenges.

Key Focus Areas and Their Potential Impact: The National Plan is explicitly designed to concentrate on several critical areas, each with transformative potential:

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Research Advancement: The plan will prioritize and coordinate federal investments in epilepsy research. This includes funding for basic science to uncover the fundamental causes of epilepsy, translational research to bridge discoveries from lab to clinic, and clinical trials for new and more effective treatments. A particular emphasis will be placed on understanding and preventing SUDEP, developing personalized medicine approaches, and exploring potential cures. Increased funding and coordinated efforts could accelerate breakthroughs that have long eluded the scientific community.

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Improved Diagnosis: By identifying gaps in diagnostic services, the plan aims to facilitate earlier and more accurate diagnosis of epilepsy. This could involve expanding access to specialized diagnostic tools, improving training for healthcare professionals, and developing public awareness campaigns to recognize seizure types and encourage prompt medical evaluation. Early diagnosis can prevent prolonged suffering, reduce seizure severity, and improve long-term outcomes.
Enhanced Treatment Options and Access: The plan will address disparities in access to effective treatments, including anti-seizure medications, surgical interventions, vagus nerve stimulation (VNS), responsive neurostimulation (RNS), and dietary therapies. It will seek to ensure that all individuals, regardless of geographic location or socioeconomic status, have access to the full spectrum of evidence-based treatments. This could involve initiatives to increase the number of epilepsy specialists, expand telehealth services, and streamline insurance approvals for necessary therapies.
Increased Awareness and Education: A national strategy will include robust public health campaigns to raise awareness about epilepsy, dispel myths, and combat stigma. Educational initiatives will target the general public, schools, workplaces, and first responders, providing accurate information about seizures, first aid, and the diverse manifestations of epilepsy. Increased awareness can foster a more inclusive society, reduce discrimination, and empower individuals with epilepsy to live more fulfilling lives.
Mortality Prevention: A concerted effort to prevent epilepsy-related deaths, especially SUDEP, will be a cornerstone of the plan. This involves funding research into SUDEP mechanisms, developing risk assessment tools, increasing awareness among patients and clinicians, and exploring interventions such as nocturnal monitoring devices. Reducing SUDEP rates would be a profound achievement, offering immense peace of mind to patients and families.
Quality of Life Enhancement: Recognizing that epilepsy impacts far more than just seizures, the plan will focus on improving the overall quality of life for individuals. This includes addressing comorbidities such as depression, anxiety, and cognitive impairment through integrated mental health services and cognitive rehabilitation programs. It will also promote initiatives to support employment, educational attainment, and independent living, ensuring that individuals with epilepsy have the resources to thrive in all aspects of their lives.

Broader Impact: The implementation of this plan could lead to a significant reduction in healthcare disparities, ensuring equitable access to care across diverse populations. It could also have positive economic ramifications by reducing healthcare costs associated with uncontrolled seizures and emergency room visits, while increasing productivity through better seizure management and employment support. Furthermore, by establishing a comprehensive and coordinated approach, the National Plan for Epilepsy could serve as a model for tackling other complex chronic conditions, demonstrating the power of a unified national health strategy.

The Road Ahead: Securing House Passage

Despite the momentous Senate victory, the work for the epilepsy community is far from over. The National Plan for Epilepsy Act must now pass the U.S. House of Representatives and be signed into law by the President before the end of the current Congressional term. This next legislative hurdle requires sustained and intensified advocacy efforts.

Epilepsy Alliance America, alongside its partners, is already actively engaging with congressional champions in the House, including Representatives Jim Costa (CA-21) and Greg Murphy, M.D. (NC-3). Their leadership will be crucial in building the necessary support and securing a timely vote. The goal is to replicate the bipartisan consensus achieved in the Senate, demonstrating to House members the widespread need and support for this critical legislation.

The momentum generated by the unanimous Senate passage is undeniable, but it must be leveraged effectively. The epilepsy community is being called upon once again to mobilize its vast network of advocates, families, and supporters. The message is clear: the shared voice that propelled the bill through the Senate must now resonate powerfully within the House of Representatives.

Take Action

The time to act is now. Epilepsy Alliance America urges every individual connected to the epilepsy community – patients, caregivers, family members, healthcare professionals, and concerned citizens – to contact their U.S. Representative immediately. Ask them to cosponsor and unequivocally support the National Plan for Epilepsy Act. Your voice is essential in ensuring that this historic legislative journey culminates in a signed law that will truly transform the lives of millions.

Take action today: Ask your U.S. Representative to support the National Plan for Epilepsy Act.
https://www.votervoice.net/EAA/campaigns/122944/respond

The unanimous Senate vote on S. 494 represents a beacon of hope and a profound recognition of the epilepsy community’s enduring fight. With continued collective action, the vision of a healthier, more supported future for all Americans living with epilepsy is within reach.