October is here: Time for pumpkin spiced everything, crisp autumn days, and longer cozy evenings. On the more serious side, October is also an opportunity for raising awareness about the risks of Sudden Unexpected Death in Epilepsy, or SUDEP, as today is SUDEP Action Day. SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes. So, a person who has a fatal accident while doing something during a seizure like biking does not count as a SUDEP death. According to the World Health Organization, over 50 million people worldwide have epilepsy, and researchers estimate that one in 1,000 of them die of SUDEP annually. Although it’s the largest cause of death among people with epilepsy, doctors are still not certain about SUDEP’s exact root causes.
While SUDEP is mysterious, research shows that actions can be taken to reduce the chances of SUDEP occurring. The best defense against SUDEP is to reduce seizures as much as possible. The more frequently a person has seizures, the higher their risk for SUDEP. Understanding this fact is critical to epilepsy patients’ health, safety, and wellbeing. In 2014, this causal relationship compelled a British nonprofit SUDEP Action to launch SUDEP Awareness Day, now known as SUDEP Action Day. The same year, my own fears and knowledge about SUDEP was one of the reasons I chose brain surgery to treat my uncontrollable seizures, a terrifying option I describe in my book Seizing Control.
Held annually on the third Wednesday in October, SUDEP Action Day aims to empower those with epilepsy by encouraging them to work with their providers to reduce epilepsy and SUDEP risks. Surprisingly, epilepsy patients’ medical practitioners are not necessarily mandated to inform their patients of the connection between SUDEP and frequent seizures. That requirement is determined at the state level. Currently, there are only eight states that legally require medical professionals to educate their patients with epilepsy about SUDEP: Connecticut, Illinois, New York, New Jersey, North Carolina, Oklahoma, Ohio, and Pennsylvania. In March, I blogged about Connecticut and Oklahoma’s efforts to adopt their 2025 legislation.
To honor SUDEP Action Day, this month I’m pleased to share that my home state of Massachusetts is currently considering House Bill 3961, the Sudden Unexpected Death in Epilepsy Education and Prevention Act. The bill brings critical awareness to SUDEP by requiring that the Massachusetts Department of Health conduct a statewide campaign to raise public awareness about SUDEP and other epilepsy-related mortalities. The bill also mandates that the Department of Health develop informational resources on SUDEP to share with epilepsy patients, their families and health care providers.
Filed by Representative Meschino on January 1, 2025, HB 3961 was referred to the Joint Committee on Public Health on March 31st. Since the spring, Epilepsy Foundation of New England, or EFNE has run a coordinated campaign to get HB 3961 passed. They asked Massachusetts residents to contact their representatives by email. I was one of many people who reached out to Health Committee representatives in June. The EFNE also found people who had lost loved ones to SUDEP to testify before the Joint Committee on Public Health on June 25th. While I wasn’t present, I’m sure the people who testified shared heartbreaking stories about their painful losses, like this one CURE Epilepsy posted about a woman who lost her nine-year-old daughter to SUDEP.
Similar to the Seizure Safe School Act, which I blogged about last month, the SUDEP Education and Prevention Act is currently in a legislative limbo. Last month, the Massachusetts House extended the reporting date to October 21st, to allow more time for the Committee to receive relevant additional information. Given the long drawn out process, it’s discouraging but not surprising that Massachusetts only passed about 2% of the roughly 7,500 bills introduced in 2023-2024. After October 21s , Joint Committee on Public Health could take it upon themselves to vote on the SUDEP Education and Prevention Act. But the bill could also get stuck in Committee because other bills take precedence.
Pressure from constituents keeps bills on legislators’ radar, so now is the time to act. If you live in Massachusetts, please contact the Joint Committee on Public Health at JointCommittee.PublicHealth@malegislature.gov and ask them to pass the SUDEP Education and Awareness Act. Be sure to include the formal title of the bill and the bill number in the subject heading: An Act Relative to Education and Prevention of Sudden Unexpected Death in Epilepsy and Other Related Epilepsy Mortalities, HB3961. Together we can make Massachusetts the ninth state to put this lifesaving guardrail in place for people with epilepsy.
Leave a Reply