A recent Neurology study investigated whether rural and urban settings impact clinical outcomes in epilepsy. The study found that “people with epilepsy living in rural America were more likely to die in hospital, arrive with severe seizures, and miss key diagnostic testing, highlighting persistent healthcare gaps that may be driven more by access to care than geography alone. While the study’s authors cautioned that the study could not establish causation, the observations clearly point to an increased need for more Epilepsy Centers in America.
Epilepsy Centers provide comprehensive care for those with epilepsy. They are equipped with the most up-to-date technologies and testing equipment and staffed with epileptologists and neurosurgeons who specialize in epilepsy treatment. Epilepsy Canters are accredited by the National Association of Epilepsy Centers, or NAEC, a nonprofit that develops standards and guidelines for best epilepsy care practices. According to the NAEC’s website, there are currently six states that don’t have any Epilepsy Centers (DE, ME. MT, ND, VT, WY) and several large rural states that only have one. As people with uncontrollable seizures cannot get driver’s licenses, these centers are often geographically inaccessible to them. So, the study’s initial observations highlight the challenges they face when trying to obtain comprehensive epilepsy treatment.
I managed uncontrollable seizures for decades, a journey I described in my memoir Seizing Control. I was lucky to have access to multiple Epilepsy Centers, with some of the top epilepsy practitioners in the country. Even so, my challenging path to seizure freedom included over a dozen unsuccessful medication trials and two brain surgeries. Managing intractable seizures while living somewhere without access to appropriate care-not to mention public transportation- sounds like a nightmare. Yet that is the reality of many people with refractory epilepsy, including 13-year-old Cambrie Sharp who lives in rural Illinois.
In late May, about two weeks before this Neurology study was published, NBC news ran a story about her. When she was seven, Cambrie underwent brain surgery and had a vagus nerve stimulator implanted to control her seizures. Initially, these measures decreased her seizures’ frequency and severity, but six years later, she’s back to multiple seizures a day. Cambrie had already tried over 20 anti-seizure medications, so last fall her neurologist recommended she try deep brain stimulation, or DBS. Like the vagus nerve stimulation, DBS involves an implant in the chest that sends electrical impulses to electrodes that have been surgically placed in the part of the brain where seizures originated. Last fall Cambrie’s insurance provider denied the procedure days before it was supposed to take place because it’s not FDA approved for pediatric patients. Without coverage, the treatment, which can cost up to $100,000, was too expensive for Cambrie’s family.
An appeal from Cambrie’s doctors was also denied. According to Dr. Réjean Guerriero, a pediatric epileptologist at WashU Medicine who is treating Cambrie, “the medical literature and our own clinical experience also show that in pediatric patients with treatment-resistant epilepsy, [deep brain stimulation] can significantly reduce seizure frequency and improve quality of life,” In April, after reviewing studies cited by Dr. Guerriero, NBC News reached out to Cambrie’s insurance provider, Anthem Blue Cross Blue Shield. Three days later, Blue Cross reversed the decision, approving deep brain stimulation for Cambrie. They stated the reason for the initial denial was due to incomplete patient medical information. Now Cambrie is scheduled to have DBS electrodes surgically implanted sometime this month. Very possibly because NBC News was watching Cambrie’s case, Anthem Blue Cross Blue Shield recently went one step further, announcing a policy change to include DBS for pediatric epilepsy, OCD and dystonia.
Like Cambrie, my epilepsy treatment journey included many unsuccessful medication trials, so I know that the multiple consecutive failures build upon themselves and seem insurmountable. By the time a doctor recommends a more invasive alternative treatment like DBS or brain surgery, the patient is at wit’s end, desperate for a successful treatment. Anthem Blue Cross’s initial denial of Cambrie’s DBS treatment was a devastating blow that her family successfully fought off, with the help of NBC news. Not everyone is so lucky. In 2023, I posted a blog about a man in suburban Vancouver, Canada whose neurologist determined that Responsive Neurostimulation, or RNS was the only way to control his refractory seizures. The RNS isn’t approved by Canada’s FDA equivalent, Health Canada, so he had to go to Seattle for the RNS implant, which his family paid for by running a GoFundMe campaign. Cambrie’s story is a victory lap for the 30% of people with epilepsy whose seizures cannot be controlled with medications, and for anyone who’s had to fight a health insurance company to get their treatment covered. The takeaway: Effective patient self-advocacy, which sadly sometimes necessitates bringing in third parties like the media, is critical to comprehensive care.
It’s no coincidence that Cambrie receives her care at Washington University Pediatric Epilepsy Center in St. Louis, Missouri. Dr. Guerriero knew about the deep brain stimulation option because he’s a pediatric epileptologist with expertise in children’s epilepsy treatment. The Center is 138 miles from her Illinois home. While there are other closer Epilepsy Centers, WashU is the nearest pediatric Epilepsy Center. Given Cambrie’s challenging journey, the possibility of successfully treating her seizures makes the long trip worth her family’s time. Her family beat the odds by getting Blue Cross to cover Cambrie’s DBS treatment. They’re defying the statistics in the recent Neurology study by traveling to St. Louis so Cambrie receives the best care possible. I’m crossing my fingers for Cambrie’s successful outcome with the DBS implants this month. I’m also hoping one of the Illinois-based Epilepsy Centers eventually opens a pediatric unit, so other kids with epilepsy won’t have to travel as far for comprehensive treatment.
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