advocates call for better access to new life-changing epilepsy treatments
of around 300,000 canadians suffer from epilepsy, more than 100,000 are unable to control their seizures with currently funded treatment options
4 minute read
linda mcclure is worried about funding for epilepsy patients in calgary on wednesday, january 10, 2024.
darren makowichuk/postmedia
the canadian epilepsy alliance (cea) is urging provincial health ministers to approve more support and access for new anti-epilepsy medications. “about one-third of the people living with epilepsy in canada do not receive sufficient seizure control with existing treatments,” said laura dickson, cea president and executive director of the epilepsy association of calgary.
dickson says that each new treatment that is approved brings new hope to people who are suffering from uncontrolled seizures.
the canadian agency for drugs and technologies in health (cadth) decides if drugs are eligible for public reimbursement after health canada approval. in september 2023, cadth recommended that cenobamate (xcopri) be covered by public drug plans if certain conditions are met. according to cadth, treatment with xcopri is expected to cost $3,214 per patient per year.
to date, no announcement has been made about provincial government coverage, but dickson spoke about being open to dialogue with alberta health about accelerating the approval timeline.
in a written statement to postmedia, the cea said that over the past five years, governments have taken a long time to reach funding deals for two of the newest generation anti-seizure medicines, resulting in patients having to wait 17 months for one and 35 months for another.
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alberta health wrote to postmedia that after xcopri was approved by health canada and cadth, the next step was to negotiate a pricing agreement through the pan-canadian pharmaceutical alliance. 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.
different types of seizures can be caused by epilepsy
cassidy megan, the 24-year-old founder of purple day, an organization that promotes epilepsy awareness and education, was diagnosed with epilepsy at 7 years old.
“a lot of people don’t realize, that people who have epilepsy, the seizures can change through time, or they can go so long without a seizure then have another one, and that can bring on a mental health toll,” said megan.
“when you have a seizure, it drains you, it’s not just a seizure. you feel tired, you feel sore, you have brain fog,” she said.
epilepsy can cause many different types of seizures, beyond what is depicted in movies or television, which is often a tonic-clonic seizure (convulsions and loss of consciousness), according to dickson. the cea also has a guide on its website on how to help someone who’s experiencing a seizure.
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other types of epilepsy can also cause loss of awareness in the moment or repetitive movements. “those are things we want to bring awareness to, because if people understand those are just symptoms of a seizure, we’re all able to accommodate people that have epilepsy.”
despite her epilepsy, megan loves to swim, and will wear a life jacket and have someone with her in the water. “if i have a seizure they can make me float on my back with my life jacket, and pull the life jacket to bring me to shore.”
“life with epilepsy is not limitations, but it’s adaptations. new medication always creates opportunity, possibility, to better our chances at seizure freedom, or at least seizure control,” said megan.
‘it’s not just about the seizures’: epilepsy affects families, jobs
about 300,000 canadians suffer from epilepsy, of whom the cea says more than 100,000 are unable to control their seizures with currently funded treatment options.
calgary’s linda mcclure — who suffers from epilepsy — was diagnosed at the age of 49 while she was living in british columbia. she came to calgary to get treatment she needed at foothills medical centre.
“i’m basically one of the 30 per cent of people with epilepsy where medications will not stop the seizures,” said mcclure.
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her seizures can go on for as much as 30 or 45 minutes, and despite many surgeries she has seizures a few times each month.
“i still experience a lot of cognitive issues, i get overwhelmed very easily,” mcclure said. “i haven’t been to a movie, a concert, a hockey game, football game, since this started because i can’t handle the noise and all that’s going on around me.”
“fortunately i have an adult son — he was 21 when this started — and he has been phenomenal, he’s my major support.”
mcclure says she’s lost friendships due to epilepsy, having to refuse invitations to go out. “i had arguments sometimes with my family, my mom was a huge support, but she would get frustrated.”
“it’s not just about the seizures, it’s not just about the person who had epilepsy — it affects their families, their relationships, some of them can’t get jobs,” she said.
dickson says that epilepsy is treatable, it’s just a matter of finding the correct treatment or combination of therapies.
“for the, i guess, 100,000 canadians would be the number that are still searching for control, xcopri is something that offers promise to those people, and hope,” said dickson.
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