'Only thing that works': Push for anti-seizure medication reapproval dominates Sask. legislature

A family affected by epilepsy and a neurologist joined the Saskatchewan NDP on Wednesday to push for the province to resume talks for a publicly funded anti-seizure medication.

Xcopri, a medication that helps those experiencing seizures, was approved by Health Canada in 2023, with the Canadian Drug Agency recommending that it be publicly funded by all provincial government drug plans.

“Just last month, the Sask. Party abruptly halted negotiations for the drug Xcopri, ignoring the advice of frontline doctors and medical specialists, as well as the pleas of people living with epilepsy,” NDP MLA and shadow minister for health Vicki Mowat said at a news conference on Wednesday.

“This drug has been found to significantly reduce seizures, and for many people living with epilepsy, it's the only thing that works.”

Dr. Alexandra Carter, a neurologist, epileptologist, and the medical director for the Saskatchewan Epilepsy Program, said epilepsy is probably the fourth most common neurological disorder.

“We know that 300,000 Canadians are affected by epilepsy. That means, in Saskatchewan, there's 10,000 people who have epilepsy,” she said.

Carter explained that while some people’s seizures are well controlled after their first or second time taking anti-seizure medications, 30 per cent of those will not be well controlled, meaning that the person either needs to add in further medications or look at the possibility of surgery.

“Surgeries can be very helpful, but not everybody is a candidate for surgery. So a third of those patients who are drug resistant are not candidates for surgery,” she said.

Kim Ebert’s son, Cody Holgate is not a candidate for surgery, and Carter said getting Xcopri publicly funded would be a benefit to people like Cody.

“[It] really would be just a call to action to try and bring people back to the table and to get this medication available to our patients,” Carter said.

Ebert shared her son’s experience with epilepsy during the news conference in hopes that other families will find relief if the medication is approved.

“At five months old, Cody was diagnosed with an uncontrollable myoclonic seizure disorder. It was difficult to manage, but manageable. In February 2021 all that changed. Cody had a drop seizure. It was terrifying and very dangerous, and soon we realized that this would be our new norm,” she said.

She explained that the drop seizures increased, and after exhausting their resources in Saskatchewan, they travelled to New York in 2022. Cody started his first dose of Xcopri in September of that year, since it wasn’t available in Canada.

“That meant we had to travel every month to New York to pick up pills, pay for them on our own, and we had a three-day window to get to New York and bring the pills home to Cody, because it was a controlled substance that couldn't get more than 30 pills at a time,” she said.

Ebert said the trips were worth it because her son was having less seizures on Xcopri. She said in 2022, Cody recorded 53 drop seizures, and in 2024, he had four.

“When your loved one is living with epilepsy, nothing is certain. You are always waiting for the other shoe to drop. If there's a medication out there that can control the seizures and eliminate that fear … Xcopri took away that uncertainty, the walking on eggshells,” she said.

During question period on Wednesday, Premier Scott Moe said Saskatchewan is not halting negotiations. Rather, he said his understanding is that there was a breakdown in negotiations from all provinces and is working to re-engage with the Pan Canadian Pharmaceutical Alliance.

“What I have asked our provincial Minister of Health to do, and the Ministry of Health to do, Mr. Speaker, is to reach out to his colleagues across the nation to see if there's any way to restart, to reinvigorate those discussions immediately,” he said.

Minister of Health Jeremy Cockrill said if speaking with colleagues across Canada does not reopen negotiations, they will try to work directly with the drug provider again to make the drug available to people like Cody.

Mowat responded by saying that the government should have made the drug publicly available to people in the first place.

“We shouldn't have to have people coming to the legislature to make this happen here today,” she said. “People should be able to have access to health care when and where they need it. And for many epilepsy patients in Saskatchewan, Xcopri is the right drug to treat their condition.”

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Both Moe and Cockrill said there is a formula to follow when it comes to adding the medication to the Saskatchewan drug plan.

“The process that a drug will find its way through to approval and ultimately to our provincial formulary and drug plan, is to be approved by the Canada Drug Agency,” he said.

Health Minister Jeremy Cockrill echoed the premier’s statements, reiterating the process of how the medication is added to the Saskatchewan drug formulary.

“There's a process that we follow. This is because we work with people, with families that come forward, with members of the opposition, with people in this province, health care providers that bring forward opportunities to add new drugs to the formula,” he said.

Cockrill said he recognizes that many people know someone who lives with epilepsy and understands the sacrifices families make for their loved ones.

“I'd be happy to meet with Kim and Cody and Dr Carter,” he said. “I also have an official from the Ministry of Health here in the building, actually, who is our representative on the Pan Canadian pharmaceutical Alliance, and who can provide more of a comprehensive update on exactly where we're at with Xcopri.”