Mother and son concerned anti-seizure medication may no longer be covered

A mother and son are questioning what happened to negotiations between the provincial government and an anti-seizure drug manufacturer for a medication they said, “changed our world.”

Cody Holgate and his mom, Kim Ebert, said the medication, Xcopri, that gave Holgate relief from drop seizures, may no longer be covered in the provincial drug plan.

Holgate described living with epilepsy as scary and wants to see the medication covered for anyone who needs it.

“Xcopri has minimized that fear,” he said. “We need to take action to minimize this fear for everybody that has epilepsy.

“I truly believe that this is a game changer.”

Read more:

• NDP blasts government for lack of 24/7 service at Regina’s Urgent Care Centre
• Sask. is addressing health-care issues, Premier Scott Moe says
• ‘It’s terrifying’: Health-care workers sound alarm at Legislative Building

In a news conference on Wednesday, the NDP and the Saskatchewan Epilepsy Program expressed frustration that Sask. Party talks with seizure drug manufacturer, Paladin, had been in limbo since October.

“I think this whole situation just speaks to another example of the Sask. Party not consulting with patients,” said NDP Health Critic Vicki Mowat.

Holgate was diagnosed with myoclonic seizure disorder when he was young. In February 2021, Holgate’s seizures began to dramatically increase to four uncontrollable drop seizures a week.

“For me as Cody’s mom, waking up every morning and wondering, ‘Will Cody have a drop seizure today, or multiple?’” Ebert said. “Or will today be the day he doesn’t recover from this, and I will lose him.”

When Holgate has a drop seizure he said, “It’s never a pretty sight,” leaving behind black eyes and concussions.

“An injury is an injury, it’s never pretty,” he said. “You’re going to feel it.”

Holgate is not eligible for surgery, and Xcopri is a medication that can give relief to people coping with a myoclonic seizure disorder.

Holgate first began taking Xcopri in September, 2022, but it wasn’t available in Canada. Ebert began travelling to New York every month to pay for the pills for her son, on her own dime.

For Ebert, getting her son medication that helped way worth it.

“Prior to this, his quality of life was… there was none,” she said. “It was just watching him die a slow death, because he all he could do is lay on the couch.

“You just never knew when he was going to drop.”

In 2022, Holgate had 53 drop seizures during the year. After consistently taking Xcopri since September 2022, Holgate has only had 4 drop seizures so far this year.

In April, 2023, Holgate was granted an exception by Health Canada to begin receiving pills in Saskatchewan.

Without the medication being covered by Saskatchewan’s drug plan, Ebert said it would cost $300 a month to pay for the medication.

“This drug gives us hope,” Holgate said. “Hope for a future, hope to plan a future, and hope for our families.”

In Question Period on Wednesday, Premier Scott Moe said there was a “breakdown in negotiations” between Paladin and the Pan-Am Pharmaceutical Alliance, that represents all provinces.

Moe said he asked Health Minister Jeremy Cockrill to “restart and re-invigorate those discussions, immediately” with provincial leaders.