Simon Thibault, 47, has lived with epilepsy since he was 13, yet the threat of an unexpected seizure still has a deep impact on his life.
"It's sometimes a lot of stress, sometimes it creates anxiety, especially for my daughter, and it's worrisome to wonder whether I'm having a seizure or not," he said.
While Thibault takes medication to try to control the condition, he hasn't been able to find the perfect balance. He suffers a couple of seizures a year, making it impossible to hold a driver's licence and forcing him to find jobs, sports and other activities that can accommodate him.
That's why he's hoping to be able to try out a drug recently approved for use in Canada, one that has been shown to be more effective than current medications in helping treat uncontrolled seizures.
"I often ask myself what my life would be like if I didn't have epilepsy," Thibault said.
"[If the new drug] can enable people to have happier or more normal lives, it would be great if it were accessible."
XCOPRI, also known as cenobamate tablets, is an adjunctive therapy in the management of partial-onset seizures in adults with epilepsy who are not satisfactorily controlled with conventional therapy. It's taken orally, once daily.
Available in Europe and the United States for several years, the drug, created by SK Biopharmaceuticals and SK Life Science, was only approved for sale in Canada in June 2023.
In Quebec, it's still not on the list of drugs covered by the province's health insurance board.
But Quebec's health research institute, the INESSS, is now recommending that change. The government-funded agency recommended to Health Minister Christian Dubé in September that XCOPRI be publicly funded.
'Significant number of patients would benefit'
Dr. Jean-François Clément, a neurologist specializing in epilepsy, says the sooner, the better.
"The main goal in epilepsy treatment is to try to obtain seizure freedom, and with this medication, that seems to be the case," he said, adding that between 20 to 30 per cent of people with epilepsy still suffer from uncontrolled seizures with their current medications.
The efficacy of XCOPRI as adjunctive therapy is supported by data derived from two randomized, double-blind, placebo-controlled studies, according to Health Canada.
In one study, patients experienced up to two times greater seizure reduction with XCOPRI compared with placebo during the 18-week study, while the other found as many as one in five patients experienced zero seizures during the maintenance phase.
"It's been two years that patients are asking me, 'When is this medication going to be available?'" said Clément. "A significant number of patients would benefit from that drug. It would change their life."
Several organizations supporting people with epilepsy, such as Épilepsie Montérégie and the Association Québécoise de l'Épilepsie, are also putting the pressure on the Quebec government to extend its insurance coverage to include the new drug.
"The community of people living with epilepsy is eagerly awaiting the removal of financial barriers to accessing effective new medications like XCOPRI," said Anie Roy, director and psychosocial worker at Épilepsie Montérégie.
"We encourage the minister of health and the Quebec government to show leadership by speeding up their evaluation of new epilepsy medications, following the recommendations of their own trusted agencies and more quickly approving their financial coverage through their drug plans."
In a statement, the Health Ministry said it's currently negotiating with the manufacturer of XCOPRI on the price.