'This drug gives us hope': Advocates call for Sask. to cover new epilepsy medication
Chris Edwards | CBC News | Posted: November 27, 2024 10:47 PM | Last Updated: November 27
'I truly believe that this is a game-changer': Sask. man with epilepsy
Epilepsy patients and advocates are calling on the Saskatchewan government to provide public coverage for a new anti-seizure drug.
Xcopri, the brand name for cenobamate tablets, is a medication heralded by The Canadian Epilepsy Alliance and the Canadian League Against Epilepsy as a promising treatment for partial onset seizures in adults.
Dr. Alexandra Carter, who directs the Saskatchewan Epilepsy Program, a multi-disciplinary team of clinical epilepsy professionals, was joined at the provincial legislature on Wednesday by a Saskatchewan family living with epilepsy.
"Cenobamate offers up to 30 per cent chance of seizure freedom on patients who are on it," Carter said. "When we look at the studies, this response we see for over four years. That people maintain a seizure reduction of over 90 per cent, or even 100 per cent."
The drug was approved by Health Canada in June 2023. The Canadian Drug Agency, which provides provinces and health authorities with advice on new treatments, also recommended the drug be reimbursed by public drug plans in August 2023. According to the Canadian Drug Agency, the drug is expected to cost $3,214 per patient per year without coverage.
Saskatchewan doesn't cover Xcopri under its provincial drug plan. Along with several other provincial governments, it ended negotiations with the pan-Canadian Pharmaceutical Alliance in October 2024 without securing a deal.
NDP health critic Vicki Mowat also spoke at the news conference, calling for the Sask. Party government to resume negotiations for public coverage of Xcopri.
"The Sask. Party needs to stop ignoring our health-care workers, ignoring our families, ignoring our friends, and get back to the bargaining table," Mowat said.
During question period on Wednesday, Saskatchewan Minister of Health Jeremy Cockrill clarified the government's position.
"I've directed the Ministry of Health to work directly with other provinces to try and re-open those negotiations," he said. "If those don't open, we'll try and work directly with the drug provider."
The province said in a statement that other therapies, including brivaracetam, eslicarbazepine and perampanel, continue to be available for Saskatchewan patients.
Over 300,000 Canadians live with epilepsy and approximately one-third of them experience uncontrolled seizures.
"This is a medication that actually shows real promise in offering control," said Lori Newman, executive director of Epilepsy Saskatoon, which provides support and programming for people with epilepsy. Her son was diagnosed with epilepsy when he was 19 years old.
"It's offering control to people who have basically been told that there's no pharmaceutical option for them."
Due to the debilitating effects of uncontrolled seizures, many people living with epilepsy have difficulty maintaining a job or holding a driver's licence.
WATCH | Regina man says epilepsy drug that's given him hope should be covered:
Kim Ebert was at the news conference with her son Cody Holgate, who suffers from epilepsy. Holgate uses Xcopri and said it has helped stabilize his seizures.
Holgate said that before Xcopri, he would frequently experience drop-fall seizures — a sudden loss of muscle strength. They could happen at any time, creating a sense of uncertainty.
"For us as a family, Xcopri took away that uncertainty," Ebert said. "The walking on eggshells, and most of all for me as Cody's mom, waking up and wondering every morning and wondering, 'will Cody have a drop seizure today, or multiple? Or will today be the day he doesn't recover from his fall?'"
"This drug gives us hope. Hope for our future, hope to plan our future, and hope for our families," Holgate said. "I truly believe that this is a game-changer."