Monday, February 12th is International Epilepsy Day, an annual awareness-raising initiative. The global event is jointly organized by the International Bureau for Epilepsy and the International League Against Epilepsy and observed on the second Monday of February. Just in time for this global epilepsy education extravaganza, the National Association of Epilepsy Centers (NAEC) just released updated guidelines that outline the services and resources Epilepsy Centers should provide to improve quality of care for people whose epilepsy is not well-controlled.
The 2023 guidelines include 52 recommendations that span the range of services that should be part of high-quality Epilepsy Centers, including inpatient evaluation, therapeutic options, and outpatient chronic disease management. Exciting updates to the guidelines recommend that Epilepsy Centers should:
- Offer genetic testing and counseling.
- Provide more education and communication for patients.
- Give greater attention to special needs populations.
- Employ a care coordinator who organizes and facilitates multidisciplinary care.
- Provide mental health screening (anxiety, depression, and learning difficulties are much more common in people with epilepsy than the general population).
- Address health disparities and inequities among the epilepsy patient population.
As I’ve blogged about the need for many of these recommendations over the past two years, I am thrilled to see them officially documented.
The NAEC was founded in 1987 by physicians who wanted to set a national agenda for quality epilepsy care. It’s a non-profit association with a membership of over 260 specialized U.S. Epilepsy Centers. Patients with uncontrolled seizures—aka refractory or intractable seizures– are typically referred to Epilepsy Centers, as they can provide a comprehensive team approach to epilepsy treatment. The centers have patient-oriented teams that include epileptologists, neurosurgeons, neuropsychologists, social workers, and others with specialized epilepsy training and expertise.
Epilepsy Centers are typically located near teaching hospitals. Forty-three out of fifty states have at least one Epilepsy Center. My home state of Massachusetts has eight, seven of which are clustered in Boston. I received care at two of them in 2014, when I had two brain surgeries to get my intractable seizures under control. While my care journey was grueling, it was ultimately successful, as I described in my book, Seizing Control. I am quite sure that my positive outcome was only possible because I was fortunate enough to have easy access to multiple Epilepsy Centers. Had I lived in one of the seven states that didn’t have them, I wouldn’t have been so lucky. There are 3.4 million people with epilepsy in America. We live in all 50 states, and 30% of us have drug resistant seizures that require the comprehensive care currently only offered at Epilepsy Centers.
Applauding the new NAEC guidelines is a good way to acknowledge International Epilepsy Day, as they will increase care quality at the 260 U.S. Epilepsy Centers. While 260 might sound like a lot, there are still seven states that don’t have one: Alaska, Maine, Montana, North Dakota, South Dakota, Vermont, and Wyoming. Every International Epilepsy Day celebration is an opportunity to increase awareness about the need for more Epilepsy Centers.
Another way to honor International Epilepsy Day is to donate to CURE Epilepsy, a Chicago-based nonprofit that funds patient-focused epilepsy research. CURE Epilepsy has funded numerous initiatives including several on the connection between epilepsy and genetics, and others focused on the correlation between traumatic brain injuries and seizure disorders. Increased epilepsy research funding will ensure that cutting-edge treatments are more widely accessible.