We Need a National Plan for Epilepsy

I was 8 years old when I witnessed my mom have a seizure in our kitchen. I did not know what was happening. I only knew that something was terribly wrong.Karina MoralesShe collapsed to the ground, unresponsive, staring blankly into the distance. Her grip became extremely tight. A few minutes later, she regained consciousness, confused and scared. She did not know where she was, what day it was, or what had happened.Seizures became part of our family's daily reality. My mom experienced them multiple times a day. As a child and teenager, I became her interpreter, caregiver, and advocate.I helped describe her seizures during neurology appointments, asked questions she was afraid to ask in English, tracked medications and refills, and learned what to do when a seizure happened.For years, I watched epilepsy affect far more than my mom's brain. It affected her independence, our family's responsibilities, and the decisions we made about everyday life. My family is far from alone.Impact Beyond SeizuresNearly 3.4 million people in the United States live with active epilepsy. For some, medications provide effective seizure control. For others, finding an effective treatment can take years. Epilepsy is often discussed as if the problem begins and ends with stopping seizures. It does not. Epilepsy can affect education, employment, independence, mental health, and quality of life, while also creating significant costs for patients and the healthcare system.There must be a national commitment from policymakers to make effective treatments available to more families. The Senate recently passed the National Plan for Epilepsy Act (S. 494). The legislation now moves to the House of Representatives.The National Plan for Epilepsy Act (H.R. 1189) would focus on preventing, diagnosing, treating, and ultimately curing epilepsy. It would also coordinate epilepsy research and services across federal agencies and provide information about federal investments in epilepsy.One piece of legislation will not solve epilepsy, but by creating a framework, we can work toward shared goals.There must be a national approach that addresses epilepsy across the continuum of care. More research is needed to understand why epilepsy develops and how to prevent it. It is critical to offer better treatments for people whose seizures remain uncontrolled and to identify patients early who may benefit from specialized care and surgery.By coordinating data and research, promising discoveries can move more efficiently from the lab to patients. This country's health systems must recognize the barriers families face outside the examination room.Advances Need to Reach PatientsMy mother's journey showed me why those goals must include people with epilepsy who do not have access to research labs or specialty clinics.What good is a treatment, if patients can't access it? A specialist can provide excellent care, but families still need to understand what is happening. A surgical option can change a life, but only if patients reach the clinicians who can identify them as candidates.Epilepsy care has come a long way. My mom is living proof of that. After years of medication trials and vagus nerve stimulation provided limited seizure control, my mom underwent resective surgery in 2022. Since then, she has been free of convulsive seizures.Her recovery showed me what is possible when the right treatment is found.But it also taught me something that has stayed with me as I pursue a career in neurology: Living with epilepsy should not require a family to become experts in navigating a fragmented healthcare system.For families like mine, a national epilepsy plan is about more than policy. It is about giving families answers, allowing more patients to access effective treatment, and helping researchers better coordinate.Policymakers, communities, families, healthcare providers, administrators, and patients need to support the passage of National Plan for Epilepsy Act (H.R. 1189). Through The Campaign for a National Plan for Epilepsy, you can message your elected officials urging them to support this legislation.For my family, epilepsy was never just my mom's diagnosis. It was something we navigated together before I was old enough to understand the healthcare system. The next family should not have to navigate it alone.Karina Morales is a Latina fourth year medical student and a public voices fellow on public health with The OpEd Project and Blue Shield of California Foundation.