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Most policymakers have never heard of SUDEP, Sudden Unexpected Death in Epilepsy. That's not a criticism. It's the awareness gap the HarborPath Policy Council is working to close.
SUDEP claims more than one in every 1,000 people with epilepsy each year. For those whose seizures aren't controlled, the risk climbs to roughly one in 150. Yet outside the families who learn about it only after losing someone, it remains almost unknown.
Laws are written by people who understand that a problem exists. When a condition is invisible to the people guiding state policy, patients and families are left without a voice for change.
That's why the Policy Council is filming a new series of conversations with families and advocates who have lived through SUDEP loss. The series began this week in Oklahoma City with Hannah Whitten, who lost her brother Dylan to SUDEP. He had every risk factor, and no one ever told his family SUDEP existed.
Hannah and her father, Reggie Whitten, took that loss to the Oklahoma Capitol and fought for change. Their advocacy led to Dylan's Law, which requires epilepsy education for medical professionals, trains the Chief Medical Examiner's office to recognize SUDEP in death investigations, creates a state program to inform patients of their own risk, and lets Oklahomans carry a voluntary epilepsy identifier on their license so first responders know what they're seeing.
Ken's Take
I've sat across the table from a lot of policymakers, and Hannah's story is the reason this video project exists. Many lawmakers want to help, they just don't know SUDEP is a threat until someone tells them, and by then it's usually a family that's already lost someone.
Dylan's Law is proof of what happens when that silence breaks. Hannah and Reggie turned grief into a policy that protects the next family before they ever have to learn what SUDEP means. That's the model for every state we're working in, and I'm grateful Hannah trusted us to tell Dylan's story on camera. I can't wait for people to see it.
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