Preventing Sudden Death in Epilepsy: Why Awareness and Policy Matter
What is SUDEP?
Sudden Unexpected Death in Epilepsy (SUDEP) is a leading cause of death among people living with epilepsy, yet many patients and families are never informed of the risk. The HarborPath Policy Council works to advance education, awareness, and policy solutions that reduce preventable deaths and improve outcomes for individuals and families affected by epilepsy.
SUDEP most often occurs following a generalized tonic-clonic seizure, frequently during sleep. While research is ongoing, evidence suggests that respiratory suppression, cardiac arrhythmias, and post-seizure brain shutdown may contribute. Each year, more than 3,400 people in the United States die from SUDEP, making it the leading cause of epilepsy-related mortality and responsible for more deaths annually than fires or Sudden Infant Death Syndrome (SIDS).
Epilepsy and the Scope of the Challenge
Epilepsy is one of the most common neurological disorders in the United States and affects individuals across every age, background, and community.
Approximately 3.4 million people in the U.S. live with epilepsy
One in 26 individuals will develop epilepsy during their lifetime
Causes include genetics, brain injury, stroke, and infection—yet the cause remains unknown in nearly 50% of cases
Seizures can disrupt education, employment, independence, and daily safety
Treatment options include medications, rescue therapies, neuromodulation devices (VNS/RNS), and surgery; however, one-third of patients remain treatment-resistant, placing them at increased SUDEP risk
Policy Priorities
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Awareness and Education Matter
Despite clinical guidelines recommending that patients and families be informed about SUDEP, awareness remains low. Many families report learning about SUDEP only after a tragedy occurs. Improving communication between healthcare providers, patients, and caregivers is one of the most immediate and effective ways to reduce preventable epilepsy-related deaths.
Education enables shared decision-making, strengthens treatment adherence, and empowers families to recognize risk factors and advocate for appropriate care.
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Strengthening Education and Prevention
While no single intervention can eliminate SUDEP risk, evidence-based strategies can significantly reduce it.
• Optimizing seizure control remains the strongest known preventive measure.
• Consistent access to medications, pharmacy services, and specialty care is essential.
• Medication adherence and regular follow-up with clinicians reduce risk.
• Nighttime seizure-monitoring devices and sleep supervision can enable faster intervention during high-risk periods.
• Early identification of high-risk patients allows clinicians to intensify therapy and deploy additional supports.
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The Role of Public Policy
Public policy is a critical lever in reducing SUDEP risk and improving outcomes for people with epilepsy. The HarborPath Policy Council believes that effective policies should include:
• Requirements for patient/caregiver education regarding SUDEP and its potential dangers.
• CPT payment code for health professionals providing education to patients.
• Liability protections for health professionals educating patients.
• Death Certificate designation of SUDEP as a cause of death for the purpose of data collection, and medical examiner protocols.
• Insurance provisions so that a person with a diagnosis of epilepsy will not be denied coverage.
• Workplace protections so that persons with epilepsy may not be denied employment opportunities.
• Assistance for low-income and Medicaid patients through appropriate public policy.
Our Commitment
The HarborPath Policy Council advocates on behalf of patients and families affected by epilepsy and SUDEP. Through cross-sector collaboration, we work to advance policies that expand access to care, strengthen education and awareness, and protect lives.
Make an impact today
Every day, patients across the United States face life-threatening challenges – from cancer and chronic diseases to opioid overdoses. The HarborPath Policy Council works to remove barriers, improve access to medications, promote education and prevention, and advance public policies that protect patients and save lives. Your donation empowers us to continue this critical advocacy work, ensuring every patient has the care, resources, and policy protections they need.
Your generosity drives real-world change. With your support, we can expand access to treatments, influence policies that protect vulnerable communities, and continue our mission to save lives through both direct support and effective public policy.
If your company is interested in providing a corporate grant to support our policy work, please contact us at info@hppolicy.org.
Join us in creating a healthier, safer future. Every gift counts.