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how new epilepsy treatment can actually change the lives of patients – once access in canada improves
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linda mcclure, epilepsy patient, discusses novel therapies
linda mcclure
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epilepsy affects roughly one per cent of the canadian population. the disorder, characterized by changes in brain activity known as a seizure, is often debilitating due to the sheer severity of symptoms.
when a person has a seizure, their brain short-circuits in a sense, and an uncontrolled burst of electrical activity causes changes in consciousness, movements, behaviour, or feelings. there are many different types of seizures, each one coming with its own set of signs, symptoms, and potentially life-threatening effects.
current therapies focus on medications, surgeries, medical devices, and specialized diets. for many with the disorder, one or a combination of the available therapies is enough to help control their seizures. still, for many others, like linda mcclure, no number of available treatments has been able to stop seizures from happening.
“i’ve had three temporal lobe lobectomies, where they had to remove a large portion of my right temporal lobe,” she said. “i’ve undergone additional depth probes and intracranial monitoring. i’ve done that twice.” she continues, “at one point, i was on four medications, and you can imagine the side effects of those. i mean, i was doped up.”
mcclure is not alone. according to ucb canada, as many as 30 per cent of canadians living with epilepsy are living with uncontrolled seizures right now.
being in and out of the seizure unit multiple times and playing the guinea pig for the many seizure medications available is the norm for people like mcclure, who have uncontrolled and drug-resistant seizures. that could all change, though, with the introduction of a new drug called xcopri, also known as cenobamate.
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the drug has been approved to treat partial-onset seizures in adults, one of the more complex types of epileptic seizures to control. according to the xcopri website, “28 per cent of people taking xcopri 400 mg during clinical trials experienced a 90% reduction of their seizures versus 3 per cent for those taking placebo (sugar pill).”
dr. alexandra carter, epileptologist and neurologist with the university of saskatchewan, has a large clinical focus on those with uncontrolled seizures. dr. carter has seen clinical evidence first hand of just how crucial xcopri could be for many patients who have tried other avenues to no avail.
“it [xcopri] was studied in drug-resistant patients, which is really exciting because it’s looking at the population we need,” said dr. carter. “that’s really exciting for my patients that don’t have other options and are just kind of stuck living with seizures either multiple times a day to months to whatever it is to say, ‘okay, we can get these seizures under control in a sustained way.’”
“that’s the other piece of what we’ve seen on the literature coming out is that these are longitudinal studies where they’ve followed patients for a few years, and we’re sometimes seeing seizure freedom completely sustained for years and sometimes when we’re not looking at seizure freedom, but we’re looking at a 90 per cent reduction in seizure frequency, so really exciting numbers.”
with these promising results, people with uncontrolled seizures were finally able to see the light at the end of the tunnel. unfortunately, new roadblocks emerged, making it difficult for them to experience the possible life-changing abilities of xcopri.
lack of access and affordability surrounding xcopri
xcopri has been available in europe and the united states for years. but while health canada approved xcopri in 2023, it still isn’t widely available to those with the types of epilepsy that could benefit from its use. the promising drug has yet to be added to each province’s individual formulary, a directory of medications covered by prescription drug plans.
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while things seem to be moving in the right direction, although glacially, it doesn’t help people like mcclure who need access now. when asked about how the drug might be able to potentially help, mcclure said, “having seizure control is like a game changer.”
mcclure spends a lot of her time worrying about having a seizure. she can’t drive or work. she is forced to rely on others, such as her son, to ensure that she is safe in case a seizure comes on. additionally, the worries she’s forced to contend with also had an impact on her mental health.
“people with epilepsy stand a far greater chance of suicide than the general population. they are prone to depression and anxiety, which i’ve experienced ten-fold,” mcclure said. “i was at my lowest point ever in my depression, and i was having suicidal ideations. i’d look over the balcony and wonder what it would feel like if i crawl over. i’d be out walking with my son and see trains coming along and wonder what it would feel like to just step in front of it.”
around one in three people diagnosed with epilepsy also have depression. when combined with uncontrolled seizures and a lack of hope for a better tomorrow, those feelings of depression can continue to worsen for those who are at the mercy of their disorder due to the lack of access to drugs that could change their lives.
with xcopri not yet added to the formulary and costing patients roughly $3,214 per year, it’s challenging to see an improvement in access and affordability until the government steps in.
“it’s all about money. that’s what everything boils down to. it’s whether or not they want to take on the additional cost of approving a drug that’s so expensive,” said mcclure. she continues, “so many of us are unable to work, and so our finances or our financial state is limited, even with any additional programs that can help mitigate costs. it’s just not enough.”
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“the government really needs to look at approving these medications provided they’ve gone through the proper trials and have proven to be of value—sooner than later. without these medications, patients with non-controlled seizures can add additional pressures on the medical system.”
dr. carter also sees cost as an issue for accessing the medication, but there’s more to it than that. the current process to get the drugs in canada isn’t easy.
“we can do applications to the states for our special access pharmacies, but that’s quite an involved process,” she said. “it’s like a 12-page application where we attach research studies and basically beg for coverage, and it’s quite a bit of back and forth between us and the special access pharmacy to get those medications approved and sent to us in canada. so, with cenobamate coming to canada and being able to be available to all of my patients—that’s huge.”
now that the drug is making its way north and health canada is in the works of adding it to provincial formularies, it’s a waiting game for those with uncontrolled epilepsy.
living with uncontrolled seizures while waiting for change
while the government takes steps toward making xcopri more affordable, those waiting on the drug have to continue with their lives as they are. for many, it’s not life at all.
“living with uncontrolled seizures—it’s not a life, it’s hell,” said mcclure. “it’s a lonely existence because you tend to surround yourself in walls to protect yourself.”
protecting yourself when you have uncontrolled seizures is vital, but it’s not always easy if you want to continue a good quality of life.
“i’ve had a seizure in safe way. i’ve had a seizure in a circle k. i’ve had a seizure just out of a canadian tire store, and in my apartment building lobby. and they’re all occurrences out in the general public,” mcclure said.
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without proper medication, the risk of having a seizure anywhere is high, and for some, counting on the kindness of strangers isn’t possible, making it even more challenging to feel safe to go out into the world without an escort.
“i’ve gotten to a point where i don’t give a damn, but i’ve come across so many individuals that don’t want to go out in public. i know a person who had a seizure in public, and someone stole their wallet. sometimes, people will even call the police because they think they’re on drugs and they’re not having a seizure.”
dr. carter and her patients with uncontrolled seizures are forced to feel fear surrounding their condition at all times, even if the frequency of their seizures seems low.
“sometimes people are having seizures only every six months or something like that, but unfortunately, that means that people’s day-to-day lives are hugely affected. so, they’re not able to drive, which means they’re not able to work a lot of the time, which means there’s a huge financial strain,” she said. “there’s also a loss of safety and independence in terms of the caregiver roles, so for patients who are young parents as well, they’re not able to safely bathe their infant without having another adult in the room because if they have a seizure, that baby could drown.
“same thing with even carrying your baby up and down the stairs you could have a seizure and fall, and that baby could be potentially injured, and it’s just those day-to-day things and the unpredictability of seizures that lead to this huge detrimental quality of life where people are not working, not driving, and suddenly scared for themselves and their family.”
with a viable and potentially life-changing drug on the horizon but the government taking their time in making it a priority, it’s difficult for people like mcclure and dr. carter’s patients to find hope in situations that feel nothing short of hopeless.
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finding the silver lining while waiting for access to novel therapies
mcclure has counted herself lucky to be able to seek care within a medical organization that genuinely cares about their patients. she has been a patient at the epilepsy clinic at foothills medical center in calgary, alberta. mcclure admires their dedication to their patients, even when things seem dire, noting that while the patients suffer from a lack of access to therapies that could help, doctors are feeling the effects, too.
“it’s got to be frustrating for the doctors, too,” she said. “they really care about their patients. they are extremely dedicated to finding answers and treatments that can help their patients. i consider myself fortunate to be here and have the support of the doctors there and all the staff, the nurses, the technologists—they’re my second family.”
while the wait continues, mcclure will continue doing what she’s always done—take care of herself as best as possible, volunteer to help others in her shoes, and try to spread as much awareness as possible surrounding the state of epilepsy and the experiences people with the disorder are forced to cope with.
“i actually wrote a book—battles of the mind: a memoir. it was important to share my story. when i started off in the early days of my diagnosis, i really had a lot of difficulties understanding things. back in bc, the lack of awareness or support access for people who are experienced in treating epilepsy was almost non-existent,” she said on how she advocated for others in her shoes. “it took me a year and a half to connect [to others in similar situations], and in the meantime, i didn’t know anybody who had a seizure. i had no one to talk to other than medical professionals that know those signs.”
“the goal of the book was to educate and share with those with epilepsy and their families. i reduced the cost to purchase the ebook and paperback. i took books into the seizure unit and left them there. i’m not in it to make money. i’m in it to share and support.”
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dr. carter hopes to speed up the process by continuing to advocate for her patients and “giving them a voice” to help enable access to xcopri sooner rather than later.
“it’s trying to just get our patients heard. that’s why i’m working with epilepsy saskatoon and the canadian epilepsy alliance in terms of trying to get this voice out there so that we’re supporting our patients who are just asking for anything that we can do to try and get their seizures under control for themselves or their children and loved ones,” she said.
while the government has taken its time in moving things along to provide easier access to xcopri for people with uncontrolled seizures, dr. carter is optimistic that positive change is coming.
“i’m optimistic because they have listened in terms of getting our unit open. we’re trying to get more equipment for in terms of this unit, so we certainly need continued support,” dr. carter said. “but they have been listening, and that’s where i’m hoping that now they’ll come from a place of understanding how dire of a situation we’re in and not kind of letting us get to that crisis situation again. so hopefully, we’ll be able to use that momentum we have.”
mcclure and people like her will have to continue waiting or figure out a way to pay out-of-pocket for the new therapy that may just change their lives. until then, they’ll have to advocate for themselves, continue making sacrifices, rely on strong bonds with loved ones, and stay positive that a seizure-free future is on the way.
“it really hit hard the other day when i realized that eight years ago, i stepped foot in foothills, and nine years ago, i was diagnosed. i think about what has occurred in my life since then and where i am today. i grew up in south surrey, white rock. i could walk to the beach. i miss the ocean. i swore i would never leave, and here i am, living in downtown calgary, of all places, just to survive and feel safe.”
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“i couldn’t have been blessed with a better child. he’s constantly looking out for me. he’s my rock,” mcclure said. “if i had seizure control, where i didn’t have to worry so much, i could really go and do more.”
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