Unfortunately, the answer to this question has a huge impact on the quality of care and access to medical resources. I knew that already, but the message was reinforced when I read Daniel DelBianco’s story this month. Daniel DelBianco is a 28-year-old man from suburban Vancouver, Canada. I’ve never met Daniel, but after reading his story online, I felt such an empathetic kinship with his situation that I must share it here. Like me, Daniel is one of over 15 million people around the world whose epileptic seizures cannot be controlled by anti-seizure medications (ASM’s). Another commonality: Daniel and I both underwent invasive neurological testing to determine if our epilepsy could be effectively treated with brain surgery.
I underwent a procedure known as a Wada test. Named after the doctor who invented it, a Wada test confirms the dominant side of the brain. Though less invasive than surgery, the test is a triple-whammy: a magnetic resonance angiogram, where they examine the brain’s blood vessels, followed by a consecutive barbiturate-dousing of each side of the brain, all the while recording results on an EEG. I was especially alarmed about the daunting technique doctors used to direct the barbiturates to the brain, a Novacaine injection in the groin. The Wada test took a few hours and determined that my intractable seizures originated from my right temporal lobe. The test also determined that this was far away from my memory and language centers, so my neurologist said I was a good surgery candidate.
In July, Daniel underwent something called Depth Electrode surgery, where electrodes were surgically implanted through a small hole, enabling doctors to use imaging techniques to pinpoint the seizure-triggering parts of his brain. After two rounds of Depth Electrode surgeries, which lasted 17 days, his neurology team determined that the seizure-triggering part of his brain was in his language center. Brain surgery isn’t an option for Daniel, so his neurologist suggested implanting a Responsive Neurostimulation (RNS) system. Like a pacemaker that monitors and responds to heart rhythms, the RNS system monitors and responds to brain activity to prevent seizures. It consists of a small, implantable neurostimulator connected to tiny wires placed in the seizure onset areas. When the device detects seizure activity, it responds by applying electrical pulses to stop it. The RNS system has slightly lower initial success rates compared to the temporal lobectomy I had. But those rates increase over time. The system was approved by the US Food and Drug Administration in 2013, and it has been implanted in over 2,000 US patients since then. For some mysterious reason Canada’s FDA equivalent, Health Canada has yet to approve the RNS system.
When Daniel’s family learned that RNS won’t be approved in Canada for at least five years, they were devastated. Daniel has intractable complex partial seizures, which occur frequently enough that they interfere with his ability to work and live independently. The family determined that their best solution was to seek treatment outside of Canada. They found an epilepsy center in Seattle that can treat Daniel, but the $350,000 out-of-pocket costs are prohibitive. Daniel’s mother set up a GoFundMe request in August. In less than four weeks, she raised over $52,000 from 368 donors. While I usually shy away from sending money to strangers, I gave a small donation to the DelBianco family. I was compelled because I remember how demoralizing it felt to still have seizures after going through brain surgeries. Ultimately, my surgeries were successful, and hopefully Daniel will eventually find success at the epilepsy center in Seattle.
Lack of access to epilepsy treatment is well documented in underdeveloped parts of the world where priority is given to contagious diseases. By comparison, Canada is relatively advanced in their epilepsy research and treatment efforts. Toronto has an epilepsy clinic focused on treating people with epilepsy. Canada has universities with neuroscience departments affiliated with local hospitals. Despite this, the RNS system isn’t approved, and Daniel DelBianco’s family must resort to a GoFundMe campaign to afford the neurologist’s recommended treatment. Given that RNS has a solid positive ten-year track record in the US, it seems like Health Canada has the robust evidence required to approve it there. I suspect it’s lack of research funding, slow bureaucratic hoops, or a combination that slows down the approval process. Where Canada already has some innovative epilepsy treatment options available, it’s probably only a matter of time before RNS is approved there. Unfortunately, that doesn’t help the DelBianco family. They have to rely on luck and the good will of those reading their GoFundMe campaign request.