Arnaud Paquet Chiasson, 42, had to give up his job as a chef. Grieve the loss of his driving license. And return to live with his mother. A dozen years ago, he was struck by a disease that changed his life: epilepsy.
The Montrealer tried every medication possible, in very high doses, to reduce the seizures. Despite everything, he continued to have one a week. In 2021, he had brain surgery. Without much success. Then, the following year, he had a brain stimulator installed. “It didn’t help much,” says the man, whose voice becomes hoarse when his brain receives mild electrical impulses.
Four months ago, Arnaud Paquet Chiasson started taking Xcopri, a drug approved in June 2023 by Health Canada, but still not covered by Quebec’s public drug insurance plan. He has free access to this molecule thanks to a program from the manufacturer, Paladin Pharmaceuticals.
“Overnight, I stopped having seizures. The metronome stopped being every two weeks. We’re now at more than two months.”
Arnaud Paquet Chiasson
In Quebec, epilepsy associations and neurologists are urging the government to reimburse Xcopri (cenobamate tablets). They argue that about a third of the 88,000 people with epilepsy in Quebec are drug-resistant to conventional treatments and could potentially benefit from the drug.
Nearly a year ago, the National Institute of Excellence in Health and Social Services (INESSS) recommended to the government that Xcopri be included in the list of exceptional drugs for patients who are resistant to traditional drugs. It issued a new favorable opinion (for other dosages) in May 2024.
Despite everything, the Ministry of Health and Social Services (MSSS) has still not authorized the reimbursement of the drug. It indicates that Xcopri is the subject of negotiations with its manufacturer “under the aegis of the Pan-Canadian Pharmaceutical Alliance, in which Quebec participates.” “It is hoped to reach an agreement to promote the registration of the product,” writes the MSSS. The pharmaceutical company Paladin did not want to comment.
The Dr Jean-François Clément, a neurologist at Charles-Le Moyne Hospital, finds it “a bit absurd” that this drug is still not reimbursed by Quebec. Xcopri has been available in the United States since 2019.
We just wonder why it is failing, considering a condition that is quite severe and a potential solution that is already accepted. It is just a matter of getting to the negotiating table, finding the price and reasonable reimbursement criteria.
The Dr Jean-François Clément, neurologist at Charles-Le Moyne hospital
The doctor points out that patients whose epilepsy is not controlled can injure themselves during their seizures (for example: shoulder dislocation) and suffer from comorbidities associated with their disease (behavioral disorders, depression, anxiety, etc.). This is without taking into account the specter of “sudden death in epilepsy.” “Approximately one in 1,000 patients who are refractory to treatment die suddenly from epilepsy,” he says.
An “impressive effect”
At the University of Montreal Hospital Center (CHUM), approximately 110 patients have been treated with Xcopri since December, says Dr.r Mark Keezer, a neurologist at the hospital and an epilepsy specialist.
According to the literature, one in five people who have not responded to all other medications will suddenly become seizure-free with this treatment. For us, this is an impressive effect.
The Dr Mark Keezer, neurologist at CHUM
At the CHUM, 17.5% of patients who have been taking Xcopri for more than three months have stopped having attacks, says Dr.r Dang Khoa Nguyen, head of the neurology department and president of the Quebec Epilepsy Association. In these patients, the median frequency of seizures was previously 10 per month. “The patients had already tried 7.4 medications,” he says.
Since Xcopri is an adjunctive treatment, it must be combined with other molecules against epileptic seizures. According to Dr.r Keezer must be introduced gradually, because it “interacts a lot” with other medications.
Despite everything, Epilepsy – Quebec section believes that Xcopri can improve the quality of life of drug-resistant patients. These patients experience “enormous” distress, emphasizes its director, Nicole Bélanger. “You lose your autonomy, you lose your identity, your self-esteem, and you become dependent.”
Arnaud Paquet Chiasson has grieved several times since his diagnosis. After leaving the profession of chef, he returned to school to pursue a master’s degree. He worked as an information technology consultant and obtained teaching assignments at HEC Montréal. He was forced to stop everything because of his too many seizures – seized by convulsions, he once collapsed in class, in front of his students.
For the moment, a return to work is not in the cards. “In the consulting world, being a part-timer for a few hours a week doesn’t exist,” he says. “Now, I’m relearning how to live my life at a different pace.”