'Step up and approve this medication': Albertans with epilepsy want access to Xcopri

There's a promising new epilepsy medication called Xcopri, but few patients can access or afford it yet, prompting people to push provinces to provide more support. 

"Unfortunately, there’s only so many surgeries you can do on your head, so my hope for me is new medications or other types of treatments to stop my seizures," said Calgarian Linda McClure. 

McClure was diagnosed with epilepsy at 46.

It's taken three surgeries several medications to get her to a place where she has fewer seizures, but she still can’t drive or live alone.

"The province needs to step up and approve this medication sooner versus later," McClure said. 

More than 300,000 Canadians have epilepsy and more than 100,000 of them suffer from seizures uncontrolled by medications, according to Canadian Epilepsy Alliance.

"New treatments that become available always provide new hope," president Laura Dickson said.

Xcopri is a cenobamate that epilepsy doctors say is very promising.

"This medication is showing that seizures are reduced in 90 per cent of people up to 30 per cent," said Dr. Alexandra Carter, director of the Saskatchewan Epilepsy Program. 

"Sometimes, we're even seeing seizure freedom that is even sustained for years."

Health Canada approved Xcopri in 2023 but that doesn't mean it's accessible.

"It's hard to get access right now," said Carter.

"There's a next step that needs to happen to get these drugs listed on the provincial drug formulary," Dickson explained.

Without provincial approval, access is limited and patients will pay out of pocket.

"Over $3,000 a year, and often people with uncontrolled epilepsy also struggle with underemployment," Dickson said.

Access to new treatments is always important, according Cassidy Megan, who created a worldwide epilepsy awareness campaign called Purple Shirt Day.

She says every seizure comes with a risk.

"Unfortunately, some seizures can end up taking someone's life."

Sudden Unexpected Death Epilepsy is a concern for some. 

"It is a serious thing we live with as a backburner thought, but we don't let it stop us because there is no preventative for it aside from trying to prevent seizures."

"More treatments available helps lessen that worry and that fear within all of us and our loved."

People with uncontrolled epilepsy have a higher risk of early death, injuries and psychological problems.

Provincial approval for this type of medication can take years, which is why people with epilepsy are speaking out about the urgency.

“Xcopri was approved by Health Canada and (Canadian Agency for Drugs and Technologies in Health), the next step was to negotiate a pricing agreement through the pan-Canadian Pharmaceutical Alliance,” read a statement from the office of Minister of Health Adriana LaGrange.

“Those negotiations began Dec. 22, 2023, and, like other provinces and territories, Alberta will decide to list the drug once a pricing agreement is reached.”