REGINA - The issue of epilepsy medication was front and centre at the Legislature on Wednesday as advocates called for coverage for a new breakthrough drug.
The drug is Xcopri, billed as a life-changing and life-saving anti-seizure medication by its supporters.
The opposition New Democrats have called for the Saskatchewan government to cover the costs for Xcopri. The drug is approved by Health Canada and available by prescription, but negotiations to provide public coverage for the drug fell through last month.
“Just last month, the SaskParty abruptly halted negotiations for the drug Xcopri, ignoring the advice of frontline doctors and medical specialists, as well as the pleas of people living with epilepsy,” said NDP Health Critic Vicki Mowat. “The cost of treatment with Xcopri is reasonable, less than $10 a day, a cost that's in line with or even less than other epilepsy medications. But more importantly, this drug has been found to significantly reduce seizures, and for many people living with epilepsy, it's the only thing that works… The Sask Party needs to stop ignoring our healthcare workers, ignoring our family, ignoring our friends, and get back to the bargaining table.”
Mowat was joined at the news conference at the Legislature by Dr. Alexandra Carter, a neurologist epileptologist and a leading specialist in epilepsy treatment in the province.
Dr. Carter noted that while many people will respond positively to their first one or two anti-seizure medications, “unfortunately 30 per cent of those people, which is 100,000 Canadians, will not be well-controlled. Their seizures will not be well-controlled on the first medications that we try or even the second medication that we try. For those patients, we have to think about either adding in medications, which comes with side effects, and also diminishing returns.”
Surgeries are another possibility but as Dr. Carter mentioned, “not everybody is a candidate for surgery.”
“So this medication, I don't usually get excited about anti-seizure medications. There is a lot of them on the market. They all have their place, and I am very happy to try them. This medication, however, is very different.”
She said that Xcopri offers up to to 30 per cent chance of “seizure freedom” on patients who are on it.
“That's a dose-dependent response that we see. This is backed up in the literature, and it's also a sustained response. When we look at the studies, this response we see for over four years that people maintain the seizure reduction of over 90 per cent or even 100 per cent, which means that then not only are we seeing that people are having seizure control, but that means that quality of life is improving.”
Also at the news conference were Regina residents Kim Ebert and her son, Cody Holgate, who lives with epilepsy. Kim spoke about Cody, who was diagnosed at five months old with what was described as an uncontrollable myoclonic seizure disorder.
In Feb. 2021, Cody had a drop seizure, and those continued to increase to the point in May 2022 where they were experiencing four drops per week and sometimes two a day.
In August 2022, the two travelled to New York to meet a specialist and it was there that they were introduced to the drug Xcopri.
In September of that year, Cody had his first dose. But obtaining the medication on a ongoing basis required multiple trips back and forth to New York.
“You may ask me, did Xcopri work? Was the travel and the expenses back and forth to New York worth it? You bet it was,” said Ebert.
She noted Cody went from having 18 drop seizures in August 2022, down to seven at the end of his first month, and down to two by October. By Feb. 2023, the drop seizures were under control.
Ebert also spoke of the difference the drug made, pointing to the unpredictability and worries associated with epilepsy.
“There's no rhyme or reason why or when it happens. Could be in the shower, walking to the mailbox, or travelling through an airport. One minute everything's fine and mid-sentence the next, they're down. Xcopri eliminated those worries and experiences. We are so blessed to have been given the opportunity to get Cody on this medication. It has changed everything for us.”
As for the reasons for why negotiations broke down to cover Xcopri, Mowat did not have an answer.
“To this point, we have no knowledge of why the government walked away from the negotiating table. I think that's an important question, but also how soon they're going to get back to be able to advocate for these patients. I think this whole situation just speaks to another example of the SaskParty not consulting with patients, not consulting with frontline healthcare workers in healthcare to provide access to healthcare when and where people need it.”
Explanation from the government
During Question Period at the Legislature, the NDP demanded answers from the Sask Party government on why there wasn’t provincial coverage for Xcopri. Mowat demanded “why did Saskatchewan halt negotiations” on the drug.
“Saskatchewan's not halting negotiations in any way, Mr. Speaker,” Premier Scott Moe responded.
“In this province, we have a formula and a Saskatchewan drug plan which has some of the most comprehensive, if not the most comprehensive coverage in the nation of Canada. The process that a drug will find its way through to approval and ultimately to our provincial formulary and drug plan is to be approved by the Canada Drug Agency. Mr. Speaker, my understanding is that has happened.
“The provinces will come together at the stage of the Pan-Canadian Pharmaceutical Alliance. It is at this stage. I understand that there are some breakdowns in the negotiations. What I have asked our Provincial Minister of Health to do and the Ministry of Health to do, Mr. Speaker, is to reach out to his colleagues across the nation to see if there's any way to restart, to reinvigorate those discussions immediately, Mr. Speaker, and if not, is there a way for Saskatchewan to re-engage, Mr. Speaker, to make this all-so-important drug available to Saskatchewan families and Saskatchewan people who require it.”
Minister of Health Jeremy Cockrill reiterated wham Moe had to say.
“As the Premier mentioned in his first answer, unfortunately negotiations did break down between all provinces and the Pan-Canadian Pharmaceutical Alliance last month. As the Premier said in his last answer, he's directed me and I've directed the Ministry of Health to work directly with other provinces to try and re-open those negotiations with the Pan-Canadian Pharmaceutical Alliance. If those don't open, we'll try and work directly with the drug provider again to make this drug available to people like Cody and many others who need it here in Saskatchewan.”
Cockrill also met Cody and the delegation after Question Period.
Chad Ryan, Assistant Deputy Minister of the Drug Plan for the Government of Saskatchewan with the Ministry of Health, sits on the Pan-Canadian Pharmaceutical Alliance for the Drug Plan. When he spoke to reporters following Question Period he indicated where things currently sit.
“There's a bit of a process in place with the Pan-Canadian Pharmaceutical Alliance and it's a consensus across all provinces. And we negotiate listing prices with pharmaceutical companies and it's done directly through that organization,” Ryan said.
He said they were “continuing to negotiate with them. We're working with our counterparts across the provinces to see if we can get back into negotiations with the company.”
