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Each year, more than 3,400 people in the United States die from Sudden Unexpected Death in Epilepsy — more than fires, more than Sudden Infant Death Syndrome. Yet most Americans have never heard of SUDEP, and far too many patients and families never receive this information from their medical team.
Approximately 3.4 million people in the U.S. live with epilepsy, and 1 in 26 individuals will develop it during their lifetime. For many of them, access to clear, honest information about SUDEP could be the difference between tragedy and prevention. Despite clinical guidelines recommending that patients and families be informed about the risk, awareness remains devastatingly low. Too often, families only learn about SUDEP after losing someone they love.
HarborPath Policy Council board member Hannah Whitten knows that reality firsthand. Her brother Dylan passed away from SUDEP at age 25. Her family had no idea the risk existed.
Rather than stepping away from that grief, Hannah has channeled it into action by lending her voice and leadership to the Policy Council and advocating for the policy changes that can help ensure no other family faces the same.
Through the HarborPath Policy Council, we are working in several states to advance practical solutions: requiring patient and caregiver education about SUDEP risks, improving death certificate reporting to strengthen research, and ensuring families have access to the information they need to make informed care decisions.
We encourage you to watch Hannah's interview and learn more about this urgent issue.
Ken's Take
Hannah's story is exactly why we built the HarborPath Policy Council. Underserved issues deserve focused and sustained advocacy. SUDEP is one of the most underserved issues in American healthcare.
The information gap around SUDEP can be corrected by smart, targeted legislation. Our work in several states is focused on practical interventions: education requirements, improved data collection, and ensuring that patients and caregivers receive the information they are entitled to have.
No family should learn about SUDEP only after a tragedy. We are proud to stand alongside Hannah in this work, and committed to advancing the policies that protect lives.
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