Woman with epilepsy, neurologist call on N.S. government to cover cost of anti-seizure medication

Cassidy Megan remembers when she was diagnosed with complex partial epilepsy. 

She was only seven years old.

“I didn’t know anything about epilepsy, nor anyone who had it, so I felt very alone,” Megan, now 24, said in an interview Friday. 

For the first year and a half, Megan hid her condition as she was afraid she would lose her friends or they would make fun of her. 

But after a local epilepsy association visited her class and gave a presentation on the brain condition that causes recurring seizures, Megan felt courageous enough to share her condition with her friends and peers. 

“The following year . . . I wanted to find other people who had epilepsy,” she said.

So in 2008, Megan founded Purple Day, an epilepsy awareness day recognized globally on March 26. 

Despite raising awareness and being open about her condition, Megan said she was still excluded from certain activities. 

“Some of (my friends’) parents wouldn’t allow me to go to birthday parties or camping because they were afraid they would do the wrong thing or afraid if I had a seizure,” she said. 

As Megan got older, she started having grand mal seizures, which cause a loss of consciousness and violent muscle contractions. 

“Before I got a new diagnosis, it propelled my journey with mental health,” she said. 

“I fell into a depression and everything was piling on.”

Megan said “it’s more than just a seizure.” 

It affected her memory and learning in school. 

Now, the Halifax resident is on medication that has helped her seizure activity but she still has seizures once every two weeks unless she’s around triggers.

“To me, it’s an improvement but my doctors say they would love to see me seizure-free,” Megan said. 

But many anti-seizure medications can be expensive. 

“Personally, my mom would skip some of her medications so we could afford mine,” Megan said. 

Dr. Eduard Bercovici, a neurologist/epileptologist and director of the Southern Ontario Epilepsy Clinic, said he often hears financial concerns from his patients. 

“Personally, my mom would skip some of her medications so we could afford mine.”

– Cassidy Megan

“Often patients will say, ‘This is very expensive,’ so I will try to find some alternative for them, but I know it’s going to be expensive because all medication is expensive,” Bercovici said. 

And Bercovici said the expense is keeping a new anti-seizure medication — Xcopri (cenobamate tablets) — out of patients’ hands.

Currently, Xcopri is not included in Nova Scotia’s Family Pharmacare Program. The Health Department did not respond to questions Friday. 

Bercovici said studies on Xcopri, which was approved by Health Canada in June 2023, show the medication has been able to reduce seizures in people who have tried other medications and failed. 

“We know that if you fail two or three medications, being seizure-free is a very rare occurrence,” he said.

“So if I’m able to reduce seizures by 60, 70, 80 per cent, 100 per cent, that means the patient can have a better quality of life. They can try to get back to work. They can try to get their licence back.” 

Bercovici called on provincial governments to cover some of the costs associated with the medication “to reduce the wait time from when the medication is improved and when we can get it into our patients’ hands.”

In the meantime, it’s on the patients to front the cost of the medication. 

Megan said trying to balance the cost of medication and the effects of having epilepsy can be difficult. She explained that people with epilepsy sometimes need to take more time off work, which affects their pay. 

“The amount that some of us can work is unfortunately not enough to always make those ends meet and impedes how we pay for medications,” she said.

Megan said there are programs and organizations to help people afford medications, such as the Metropolitan Dispensary and the Compassionate Program, but she would like to see more medications, such as Xcopri, financially covered.

“Funding is so essential because of how costly everything is,” she said.

Megan said she also hopes the province continues to raise awareness about epilepsy and encourages people to have conversations to learn about the neurological condition.