Saskatchewan Families Seek Public Funding for Promising Epilepsy Drug
Families living with epilepsy in Saskatchewan are urging the provincial government to fund a new treatment that offers hope for seizure control. Xcopri (cenobamate), recently approved by Health Canada, has shown remarkable success in clinical trials, offering up to a 30% chance of seizure freedom in patients who have struggled with traditional medications.
“This drug offers our community a chance at a life without the constant threat of seizures,” stated Lori Newman, Executive Director of Epilepsy Saskatoon. “For many, this medication provides control when we’ve been told there are no other options.”
"This situation is heartbreaking," stated Kim Ebert, whose son Cody suffers from epilepsy. Before taking Xcopri, Cody experienced frequent, debilitating drop seizures, making everyday life a constant source of anxiety for him and his family.
“For us as a family, Xcopri took away that uncertainty,” Ebert explained. “Every morning, I used to wake up wondering if Cody would have a seizure that day, or how many. This drug gives us hope for our future.”
Cody Holgate, a 30-year-old Saskatchewan resident, spoke personally about the impact Xcopri has had on his life: "This drug gives us hope. Hope for our future, hope to plan our future, and hope for our families. I truly believe that this is a game-changer."
Sadly, Xcopri is currently not covered by Saskatchewan’s provincial drug plan. Along with several other provinces, Saskatchewan ended negotiations with the pan-Canadian Pharmaceutical Alliance in October 2024 without securing a deal for public reimbursement.
Dr. Alexandra Carter, Director of the Saskatchewan Epilepsy Program, emphasized the efficacy of Xcopri and stressed the urgent need for government intervention. "Cenobamate offers up to a 30 percent chance of seizure freedom on patients who are on it," Carter stated. “When we look at the studies, people maintain this seizure reduction over four years. Over 90 percent, or even 100 percent.” Carter, accompanied by the Ebert family, brought the issue to the provincial legislature, calling on the government to prioritize the well-being of epilepsy patients.
The Canadian Drug Agency recommends public coverage for Xcopri, suggesting the drug’s potential benefits outweigh its cost of $3,214 per patient per year without coverage. This recommendation reinforces the concerns of advocates and families, highlighting the burden placed on patients who are forced to choose between their health and financial stability.
Saskatchewan’s Minister of Health, Jeremy Cockrill, acknowledged the concerns raised by families and healthcare professionals. He expressed his intention to resume negotiations to secure funding but did not commit to a specific timeline or plan.
“I’ve directed the Ministry of Health to work directly with other provinces to try and re-open those negotiations," Cockrill stated. "If those don’t open, we’ll try and work directly with the drug provider."
As families continue to push for this life-changing medication to be more accessible, the story of Xcopri highlights a crucial issue: the struggle for equitable access to essential healthcare in Canada.
Cody Holgate, 30, is taking a new epilepsy drug called Xcopri, despite it not being approved for coverage in Saskatchewan. Before taking the drug, the Regina man had 53 serious epileptic seizures in a year. That’s been reduced to four in 2024.
