Every moment a gift: epilepsy community fights for new drug

At issue is XCopri (Cenobamate), an anticonvulsant pill taken once a day that was just approved for use in Canada last year and may hold the key to seizure freedom for drug-resistant patients – if it can be covered by insurance to offset the $3,000-a-year price tag.

30 per cent

Nationally, 300,000 people live with the extremely common neurological condition, which has a morbidity and mortality rate of up to 10 per cent. In Saskatchewan, the number of people that live with the condition translates to 10,000 people and in 30 per cent of all epileptic cases or 3,000 people in Saskatchewan are drug resistant – one third of whom are not candidates for surgery.

“I think it’s very important that we have a medication that offers so much cost-effective efficacy where we can see seizure freedom on it and sustained seizure freedom on it and we’re not seeing that,” Dr. Carter said.

Last month, multiple provinces including Ontario and Saskatchewan stepped away from negotiations with pCPA. As a result, the Canadian Epilepsy Alliance has joined forces with national physicians’ groups and patients for what is becoming a national call out to provincial governments to get back to the negotiating table.

“All of us across the country – epileptologists – were pretty shocked and outraged that the provinces stepped away from this. This medication is reasonably priced, it’s about the same or less than many of our anti-seizure medications that we see, and it has so much benefit so, we were pretty disappointed in that.”

Russell Schell is one of the patiemts currently on XCopri. (Submitted Photo/Russell Schell)

Russell Schell’s journey with the disorder began three years ago, in the middle of the night when his wife woke him up.

“It was just not expected, and I was acting strange, and she called the paramedics,” he said.

The North Battleford resident explained the next day was much the same – he wasn’t acting like himself and that led to multiple tests being done.

He was diagnosed with severe drug resistant bilateral temporal epilepsy – the area of the brain that’s responsible for learning and memory.

“When I have a seizure, it happens and while I’m having the seizure, I’m unaware of what’s going on and what I’m doing,” he said.

Losing a license

“I don’t shake or convulse or anything, I just kind of either stare off into space or I’ll make a smacking sound with my lips.”

Schell, is also among the epilepsy patients who fall into the 30 per cent category. As a result of his uncontrolled condition, he has lost his driver’s license multiple times and with that, the ability to work. In the spring, he was put on the drug as part of a patient support program and he now has hope that with the therapy, he’ll be able to get his license and get back to life.

“I’m an equipment operator so without that, it’s pretty hard to operate equipment or drive,” he said.

For Lori Newman, president of Epilepsy Saskatoon, the need for this particular drug to be approved for coverage would be a life saver for her son who is not currently prescribed it.

Nearly a decade ago, her then 19-year-old son had his first seizure which led to the discovery that there were misaligned cells in his prefrontal cortex – the area of the brain that doesn’t fully develop until 25.

“There was kindling already there and then a match went to it and then it started and then no medication would stop it.”

The diagnosis led to brain surgery to remove the part of the brain where the seizures were starting from, but they continued post-surgery. Now her son lives on a cocktail of medications.

“He has the kind of epilepsy – focal – starting in one spot of the brain as opposed to generalized that a drug like XCopri provides hope for.”

A stalker

Newman said for those living with the seizure disorder, it is like having a stalker. She explained that there isn’t any rhyme or reason to it which leads to fear and uncertainty. For those living with drug-resistant epilepsy, the uncertainty is exacerbated as the cocktails can be complex.

“They very rarely take you off medication, they add medication,” said Newman.

“It’s a science obviously but it’s also a bit of an art form because the medication reacts differently for each person,” she said.

“For some people adding a third, adding a fourth will work, for others it doesn’t, it just compounds the number of side effects.”

According to Dr. Carter, rarely does she get excited by a drug, but this one worked differently as it offers up to a 30 per cent chance of seizure freedom, whereas others when combined in a cocktail of upwards of five or six different treatments, offer a three to five per cent chance.

Since it also allows for patients to be on fewer medications, there is less chance for contraindications.

During Question Period, Mowat addressed the issue and took her questions to newly appointed Health Minister Jeremy Cockrill.

“XCopri is said to fill those gaps and provide relief for thousands in Saskatchewan alone. Why did Saskatchewan halt negotiations on this life changing and life-saving medication?”

Premier Scott Moe was first to reply and said they weren’t halting negotiations in any way.

“In this province, we have a formula and a Saskatchewan drug plan,” he said, describing it as one of the most comprehensive plans in the country.

“A process that a drug will find its way through to approval and ultimately to our provincial formulary and drug plan Mr. Speaker is to be approved by the Canada Drug Agency, Mr. Speaker, my understanding is that has happened.”

Communication breakdown

Acknowledging that there has been some breakdown of communication with pCPA with other provinces, the premier said he directed Cockrill and the Ministry of Health to reach out to national counterparts and restart or “reinvigorate” the discissions.

“If not, is there a way for Saskatchewan to reengage, Mr. Speaker, to make this all so important drug available to Saskatchewan families?”

Mowat countered and said the government withdrew and added that Health Canada approved the drug in 2023 and the CDA recommended it be publicly funded.

“Patients that live with uncontrolled seizures live with the unknown every single day,” she added, noting the impacts to daily living including employment, education, interpersonal relationships and mental health.

Addressing Cockrill, she asked if he would work with other leaders and get back the table to which the minister reiterated what the premier said.

“If those (negotiations) don’t open, we’ll try working directly with the drug provider,” he said.

When Mowat again addressed the breakdown of negotiations and spoke to patients having to go without treatment, she asked what the minister says to the families still waiting.

Minister of Health Jeremy Cockrill takes questions about XCopri during Question Period. (Screenshot)

“The wording of the question from member opposite shows I’m not sure she has an understanding of how the process of a drug is added to the Saskatchewan formulary,” Cockrill said, which drew scoffs of disbelief across the aisle.

The minister shot back and asked Mowat, the member from Saskatoon Fairview, to let him finish answering.

“We invest close to $400 million a year into our Saskatchewan drug plan, this is because there’s a process that we follow,” he said.

“We’re going to work to make sure XCopri can be available to Saskatchewan residents who need it.”

According to Newman, epilepsy doesn’t just create fear in those who live with it. While her son “is living a wonderful life,” she also carries the fear.

“I, as a mother, am always afraid that a single seizure could really hurt him or kill him.”

Meanwhile, Schell began taking the therapy this spring after joining the program that hundreds of patients are on and within a month, he noticed a difference.

Uncertain future

The patients’ future is uncertain, however, as the program has since closed due to the breakdown in negotiations. and it’s unclear if the company who manufactures it will continue to pay for it.

“I can’t enroll new people on it,” said Dr. Carter.

“I have patients in the same boat who are having uncontrolled seizures, who now cannot have this medication unless they’re able to pay $300 a month, which when we say they are not driving, not able to work is very unaffordable for them.”

Holgate began taking the drug before it was approved in Canada as his family had to travel to New York for a time in 2022 before getting special dispensation to receive it in province by Health Canada in April 2023. Since been on the medication, he went from having over 50 seizures in a year down to having less than five. When taking questions by media following the announcement, the 30-year-old said having the condition was scary, but he was pragmatic.

Game changer

“I have to know that it’s my life and my mom knows it’s my life but XCopri has minimalized that fear,” he said, adding that they need to take action for others.

“I truly believe that this is a game changer, I do.”

Schell agreed and called it a miracle drug. To this day, they do not know why he has epilepsy but since he started it, he’s now down to just two medications and he’s looking ahead.

“This medication should be covered by the government,” he said noting it’s not aspirin.

“This medication is needed for quality of life – to live – and have a proper life.”

For Holgate’s family, they embrace each day and spend as much time together as they can.

“You enjoy every single moment you have with Cody, we laugh, we play, we have deep conversations, but every moment we have is a gift.”

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julia.lovettsquires@pattisonmedia.com

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by Julia Lovett-Squires

Every moment a gift: epilepsy community fights for new drug

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