Urgent call for timely, affordable access to new life-changing epilepsy treatments in Canada

Physicians, patients and advocates urge governments to support Canadians living with epilepsy


Calgary, AB, Jan. 10, 2024 (GLOBE NEWSWIRE) -- The Canadian Epilepsy Alliance, along with physicians, patients and their families are calling on provincial Health Ministers to address an unmet need for patient supports and provide access to new anti-epilepsy medications in Canada. Although epilepsy is a highly treatable disease, more than 100,000 Canadians are unable to control their seizures with the treatment options currently funded by provincial governments in Canada.

Living with uncontrolled seizures has a direct impact on a person’s quality of life, including social isolation, educational prospects, career opportunities and mental health. While the disease affects nearly 300,000 Canadians, it is not widely understood by the general population leading to stigma and discrimination.

“People believe we can’t get a good job or have a family of our own one day. It means being shunned or having to hide our epilepsy,” said 24-year-old Cassidy Megan. She was diagnosed with epilepsy at age seven and recently received two international awards for founding Purple Day, an epilepsy awareness day that is recognized and celebrated globally every year on March 26.  

“Having access to a new medication makes it possible for us to live without fear of having a seizure, or the fear of someone not knowing what to do if they see me having a seizure and unintentionally hurting me by doing the wrong thing. Wouldn't that be amazing?”

In June 2023, Health Canada approved a promising new anti-seizure medication, giving patients like Megan new hope. Xcopri (Cenobamate) has been shown to provide higher rates of seizure freedom compared to other treatments.

“We are in need of medication which can better control seizures,” said Dr. Eduard Bercovici, neurologist/epileptologist and director of the Southern Ontario Epilepsy Clinic. “The recent Health Canada approval of Xcopri aims to provide us with hope for our patients given the higher seizure freedom rates and improved seizure control in studies and real-world data from other countries. It’s imperative that the government is able to provide medication coverage for new seizure medications that have the potential to improve patient quality of life.”

The government-funded agency responsible for reviewing new medications (the Canadian Agency for Drugs and Technologies in Health) has recommended Xcopri be publicly covered by provincial governments through their drug plans. So far, no announcements have been made.     

“The epilepsy community eagerly anticipates the elimination of cost barriers to accessing important new medications like Xcopri,” said Laura Dickson, president of the Canadian Epilepsy Alliance. “We urge the Ministers of Health across Canada to demonstrate leadership by accelerating their review of new anti-epilepsy medicines, following the recommendations of their own trusted agencies, and quickly approving coverage by their drug plans.”

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Interviews can be scheduled with physicians, patients and advocates in Ontario, Alberta, Saskatchewan and Nova Scotia including: 

  • Dr. Eduard Bercovici - Neurologist/epileptologist and Director, Southern Ontario Epilepsy Clinic 

  • Dr. Alexandra Carter - Director, Saskatchewan Epilepsy Program, University of Saskatchewan 

  • Cassidy Megan - Founder, Purple Day 

  • Laura Dickson - President, Canadian Epilepsy Alliance 

  • Paul Raymond - CEO, Epilepsy Ontario 

  • Lori Newman - President, Epilepsy Saskatoon 

About the Canadian Epilepsy Alliance 

The Canadian Epilepsy Alliance (CEA) is a Canada-wide network of 25 community-based agencies promoting independence and quality of life for people affected by epilepsy. Member Associations provide a range of support services, information, advocacy and public awareness from coast-to-coast. This includes counselling, education, advocacy, public awareness, employment assistance, children’s programs and support groups. CEA’s vision is to ensure every person living with epilepsy has the opportunity to achieve his/her fullest potential and participate in and contribute to all aspects of life.

 

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