During this era when national scientific research funding and political activity are more volatile than ever, I’m not surprised that the good news regarding epilepsy activism occurred at the state level. During the past month, three different states have taken official measures to raise awareness about the risks of Sudden Unexpected Death in Epilepsy, or SUDEP. 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. 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. This causal relationship was one of the reasons I chose brain surgery to treat my uncontrollable seizures, a terrifying option I describe in my book Seizing Control. I find it surprising that it is not universally mandatory for epilepsy practitioners to inform their patients of the connection between SUDEP and frequent seizures. Apparently, that requirement is determined at the state level.
Until last month, only six states legally required medical professionals to educate their patients with epilepsy about SUDEP: Illinois, New York, New Jersey, North Carolina, Ohio, and Pennsylvania. Last month, Oklahoma and Connecticut both introduced similar SUDEP awareness legislation and North Carolina extended their SUDEP awareness efforts by introducing a bill to officially adopt SUDEP Awareness Week and establishing a legislative goal that encourages local education boards to develop and provide seizure awareness training for teachers and school personnel.
In Oklahoma, the proposed legislation, known as Dylan’s Law was a response to the death of a child, Dylan Whitten, who died from SUDEP in 2017. Dylan’s family has been working with state legislators to get the bill considered. According to his sister, Hannah, “Dylan passed away in 2017 from SUDEP, and despite him having every risk factor, we were never told of how to reduce sudden death in epilepsy. After we lost my brother, we decided we would try to make a change, and hopefully no other Oklahoma family would have to lose a loved one.”
Last month, Connecticut state Senator Saud Anwar introduced a bill that would require health care practitioners to provide epilepsy patients and their families with information about SUDEP and increase awareness among professionals outside the neurology department. A medical doctor who specializes in lung diseases, Senator Anwar proposed the bill after meeting with a Connecticut mother whose son died from SUDEP. Notably, it was children’s deaths that inspired both Connecticut and Oklahoma legislatures to take up these bills. While I understand why a child’s death is perceived as the most tragic, it seems shameful that legislators aren’t motivated to put SUDEP awareness measures in place for all people with epilepsy, regardless of age.
Proactively trying to prevent the one in 1,000 SUDEP deaths that occur is a laudable goal, worthy of national attention from the Congressional House and Senate Epilepsy Caucuses. In fact, the recently introduced National Plan for Epilepsy Act (which I blogged about in December) includes SUDEP reduction and awareness raising measures. The Epilepsy Foundation of America (EFA) is running a campaign asking people to contact their U.S. senators and representatives and support the National Plan for Epilepsy Act (Senate Bill 494, House Bill 1189). Go to this URL to complete the template letter asking them to support the Act and hit “send” to your U.S. senators and representatives,. https://www.votervoice.net/mobile/EFA/Campaigns/119255/Respond
Unfortunately, I suspect our national leaders have enough on their hands that passage of the National Plan for Epilepsy Act will remain on the back burner for the foreseeable future. In the meantime, let’s celebrate Connecticut and Oklahoma’s efforts. And if, like me, you live in one of the 42 states that don’t yet have SUDEP awareness-raising measures, you can reach out to your state representative and senator and ask them to follow suit.
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