In May, Minnesota became the first state to pass legislation expanding access and coverage to seizure detection devices. Thanks to Minnesota’s Health and Human Services appropriations bill, FDA-approved seizure detection devices will now be covered by Minnesota Medical Assistance, the state’s health insurance program for low-income residents. The bill was signed into law by Governor Tim Walz and goes into effect on January 1, 2024. While this is excellent news for those with uncontrollable seizures, my enthusiasm is mitigated by the bill’s limited reach and protracted journey.
Last week the Twin Cities Press ran a story about this exciting legislative development, which featured 16-year-old Tabbie King. Ms. King began experiencing what her mother suspected were seizures last August. Although she had several episodes, her electroencephalography, or EEG test showed no abnormal brain activity. The episodes’ frequency increased, and in December, Ms. King was diagnosed with epilepsy. The episodes that doctors previously dubbed “non-epileptic behavioral seizures” were in fact tonic-clonic or grand mal seizures. With a correct epilepsy diagnosis, Ms. King could finally obtain a prescription for anti-seizure medication.
Her neurologist also prescribed a seizure-detection device, the Embrace2. Embrace2 is an epilepsy Smart-band that detects motion patterns and physiological signals associated with grand mal seizures. The device connects to owners’ Smartphone’s Alert App via Bluetooth, and immediately alerts their caregivers or family members if it detects seizure activity. Testimonials from people with epilepsy who have used Embrace2 speak of increased self-confidence. In some cases, the device empowered patients to live independently for the first time. The device can also be lifesaving when a patient is alone during a seizure that requires immediate medical attention.
Embrace2 received FDA clearance for seizure monitoring in January 2018. Eleven months later, the device was approved for children. Tabbie King said Embrace2 was life changing.
“I can’t physically come to my mom and tell her that I’m having a seizure because I just straight-up black out. With the Embrace2, [that] has really changed. [My mother] has told me she’s had sleepless nights worrying about me and stuff…. I was really worried, too. Before I even got the Embrace, I was walking around school worrying, ‘If I’m going to have a seizure now, who’s going to be there to help me?’”
The Embrace2 costs about $250 before taxes and requires a service subscription that costs an additional $200 annually. When Tabbie King received the prescription, her family did not have an insurance plan that covered its costs. So, despite the joy of finally having answers and possible solutions, the King family struggled. Tabbie missed many days of school. Money was tight from medical appointments and travel and paying for the prescriptions. Tabbie’s mother, Kaytee had to miss work to care for her daughter. “I had to pay for everything out of pocket,” Kaytee said. “I was out of work for weeks. I had to go to Children’s hospital for 10 days to get her tested and so that put me behind, because that’s two weeks of work that I missed.” While the Kings said the cost of the device was well worth it for their peace of mind, it wasn’t easy for them to afford.
Under the new legislation, medical supplies, and equipment like the Embrace2 will be covered by medical assistance in Minnesota, as of January 1, 2024. Minnesota is the first state to include these devices under its public health coverage. The Epilepsy Foundation of Minnesota was a strong advocate for the seizure detection device bill during the legislative session. “We are elated to witness the passing of this bill — the first of its kind in the nation,” said Glen Lloyd, CEO and executive director of Epilepsy Foundation of Minnesota. “It is a significant victory for individuals living with epilepsy and their families, and for Minnesota as a whole…. This legislation removes financial barriers to this lifesaving technology, ensuring individuals at all income levels can access seizure detection devices. This achievement represents a giant leap towards safeguarding the well-being and enhancing the quality of life for those affected by epilepsy and moves our state forward.”
I agree that Minnesota’s legislation is cutting edge, and I hope other states follow their lead. But I’m frustrated by Embrace2’s timeline. Embrace2 was approved in Europe in 2017. In America, Embrace2 was approved for children in December 2018. Almost five years later, only one state has approved it for coverage under its public insurance program. While I’m thrilled that Tabbie King and other Minnesotans with epilepsy have access to seizure-detection devices, on a macro level, I would call this a small step forward, not the “giant leap,” Mr. Lloyd referenced.
Seizure detection devices can help prevent injury and death related to epilepsy, including Sudden Unexpected Death in Epilepsy, which kills about 3,000 Americans each year[i]. Since her December diagnosis, Tabbie King has enjoyed getting back to her life without as much fear and anxiety about having seizures. In addition to the reassurance of having the seizure detection watch, her medication has helped her go nearly four months without a seizure. “I’m happy to have been diagnosed and to have the Embrace,” Tabbie said.
I live with a sixteen-year-old, so I know they spend inordinate amounts of time worrying about relatively mundane things that seem huge to the adolescent mind. When I was sixteen, like Tabbie, I also worried about who might see me have a seizure when I was at school. Now that her seizures are under control, I hope Tabbie can focus her energy on more innocuous teenage challenges like choosing whether to attend upcoming high school dances, and meeting homework deadlines.
[i] Centers for Disease Control