“I can sum it up in one word and that word is hope. This drug gives us hope — for a future, to plan a future and for our families.”
When Cody Holgate looks back at his life two years ago compared to today, it’s hardly the same.
He has lived with an uncontrollable seizure disorder his whole life and in 2022, he was having serious drop seizures weekly, sometimes twice a day.
Those seizures were disorienting, terrifying and sometimes meant spending weeks recovering from the concussions, cuts and bruises that came along with the unpredictable nature of epilepsy.
Then, he travelled to New York for a prescription for Xcopri, also known as cenobamate tablets. An oral medication to treat partial-onset seizure disorders, it’s proving more successful for drug-resistant and non-surgical patients like Holgate.
Within a month, his seizures were cut by half and now, the world is entirely different.
“The falls are now few and far between. That in itself is a godsend,” said Holgate, speaking as a guest at the legislature on Wednesday before session began for the day.
Holgate, who is from Regina, went from having 53 drop seizures over the course of 2022, to just four recorded drop attacks so far in 2024. He started Xcopri in late 2023, and now he and his mother are pleading with the province to add it to the provincial drug plan so other Saskatchewan families can have better access to the life-changing treatment.
“I can sum it up in one word and that word is hope. This drug gives us hope — for a future, to plan a future and for our families,” said Holgate’s mother, Kim Ebert.
Ebert said the introduction of Xcopri into their lives has “changed our world,” providing stability for not only Holgate but his family and friends.
“When your loved one is living with epilepsy, nothing is certain. You’re always waiting for the other shoe to drop. If there’s medication out there that can control the seizures and eliminate that fear, it seems cruel not to offer it,” said Ebert.
Their call is backed by the Canadian League Against Epilepsy, which represents more than 200 doctors across the country and head of Saskatchewan’s epilepsy program Dr. Alexandra Carter.
“I don’t usually get excited about anti-seizure medications. There’s a lot of them on the market,” said Carter, a Saskatoon neurologist, epileptologist and Holgate’s physician. “This medication, however, is very different.”
Xcopri offers a 30-per-cent chance of what Carter described as “seizure freedom” for patients, compared to other medications that have a much lower success rate.
Available in the U.S. since 2011, Xcopri was approved by Health Canada in 2023. In July of that years, Canada’s Drug and Health Technology Agency recommended Xcopri be covered by public drug plans but provinces have yet to do so.
Carter said Saskatchewan’s Ministry of Health was considering adding the drug to its formulary earlier this year but “abruptly halted” negotiations with pharmaceutical company Paladin Pharma in October. She said the stop means an end to a patient support program from Paladin that had allowed hundreds of Saskatchewan patients to enrol for access to Xcopri.
“We were shocked and outraged the province would step away from this,” said Carter. “We still don’t know why.”
She said the cost of Xcopri is relatively comparable to that of other medications that are covered, at about $3,200 per year, but many people will not be able to afford the drug without aid.
Opposition health critic Vicki Mowat challenged Minister of Health Jeremy Cockrill to answer for why the province would walk away from discussions to add a “critical part of health care that people in Saskatchewan deserve.”
“For many people living with epilepsy, it’s the only thing that works,” said Mowat, standing with Holgate and the other advocates. “I think this whole situation just speaks to another example of the Saskatchewan Party not consulting with front line health-care workers, to provide access to health care where people need it.”
During question period Wednesday, Premier Scott Moe said the province is not “halting negotiations in any way,” but that there was “some breakdown in negotiations” with the Pan-Canadian Pharmaceutical Alliance.
Cockrill said he has been asked to “work directly with other provincial leaders” to restart those talks, but neither elaborated on why negotiations had paused.
The Ministry of Health did not provide a request for further information before print deadline.
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