‘We can’t search forever:’ Drug shortage leaves Ontario family scrambling to find epilepsy medication

For months, Rebecca Roland and her family have been scouring the province for pharmacies that carry her father’s epilepsy medication.

The drug, Teva-Clobazam, has been in short supply in Canada since the summer and as a result, Roland, who lives in Kitchener, Ont., is constantly contacting pharmacies around the province in the hope that they might be able to fill even just a few days-worth of the medication.

“We’ve been scrambling between pharmacies trying to find bits and pieces,” she told CP24.com earlier this week.

She said her family recently found some medication in Huntsville and Bracebridge but due to a massive storm in the region earlier this month, they couldn’t get to it.

“Right now, dad has enough to get him to the weekend,” she said during an interview on Tuesday.

“We’re constantly phoning and adding to a list of what pharmacies might have a few. But it’s worrisome for him,” Roland said.

She said her dad, who is 90, has been on anti-seizure medication since he suffered a head injury in the workplace back in the 1980s.

Roland said epilepsy medication is often “hit and miss” until you find the right drug and since he started Teva-Clobazam, it has worked perfectly to keep his seizures at bay.

She said with the exception of needing this medication, her father is otherwise very healthy.

“He’s in such amazing shape for 90,” Roland said.

After speaking with her father’s neurologist about the drug shortage, she said they were told that their only option is to try another brand and hope it works.

“They don’t want to try another type of medication because it may not work at all,” Roland said, noting that there is a significant risk of a break-through seizure.

“I’m not sure he’ll survive a seizure right now.”

She said that another aggravating factor is that the drug is listed as a controlled substance, which makes it even more difficult to access.

“That in itself has been a nightmare,” she said, adding that her father takes four tablets a day.

“There’s all sorts of rules about being able to fill it. So even if we can go and find like 20 tablets somewhere, we can’t get a little stockpile for him because then the next (pharmacist) won’t fill it until he’s almost out again,” she said.

Shortage was supposed to end in the fall

Initially, she said, the shortage was only supposed to last until October.

“When October came around, we thought we’ve made it. We’ve got enough pills. We’ve kept him going. And then the drug shortage went to November,” Roland said.

“We thought, OK, so we’re going to keep doing this for a little bit longer.”

The shortage was subsequently extended to April of 2025.

“The concern is that even if we were to find enough to make it to April, what if the drug’s not back then,” she said.

Another complication, she noted, is that pharmacies are now starting to tell her that the supply they do have will soon expire.

She said the family has even looked into whether than can access the medication across the border.

“There’s a whole lot of rules about going out of country for a controlled substance,” she said.

In order to access medication from the U.S., she said her family would need to find a U.S. doctor to prescribe the medication and they would need to fill it at a pharmacy there.

“He would only be allowed to bring 30 tablets across the border each time,” she said.

She added that going back and forth across the border that frequently would be taxing for a man of his age.

“We need someone to help us find a different solution because we can’t search forever,” she said.

In a statement to CP24.com, Health Canada said it does “everything it can” to prevent shortages and help resolve them when they do occur.

“Clobazam tablets are available in a 10mg strength and are marketed by two manufacturers: Apotex and Teva. Teva has reported a shortage due to a manufacturing disruption, with an anticipated end date of April 20, 2025. However, Apotex has not,” the agency said in the statement.

“Health Canada has been and continues to actively engage with these manufacturers to assess product availability and options to mitigate any impacts of the shortage.”

Roland said her father tried the Apo version of the medication about a decade ago but had to discontinuing using it after he experienced seizure-like symptoms.

She said that ultimately, if they run out of his medication, they will have to make the switch.

“We’re very concerned about what the outcome will be,” she said.

“He said if he has to switch, he said to me… ‘you have to phone me every morning to see if I wake up,’” Roland said.

Laura Dickson, president of the Canadian Epilepsy Alliance, said more people will be impacted the longer the shortage persists.

“This kind of a disruption to supply, it’s potentially dangerous for people for whom this treatment is really the only source of seizure relief,” she said.

“And with the shortage that was expected to clear up by October and is now forecasted to go on until April, there will obviously be more people impacted.”

‘Severe consequences’

Dr. Danielle Andrade, a neurologist and medical director of the Epilepsy Program at the University Health Network, said Teva-Clobazam is a commonly prescribed medication and the shortage is likely impacting thousands of patients.

“For patients that had their seizures controlled on this medication, now there’s a chance that they’re going to have seizures again and that can cause all kinds of problems, from a head injury because of a seizure or a bone fracture to losing their ability to drive,” she said.

Andrade noted that in elderly patients, these injuries can be “life-threatening.”

“It can have severe consequences,” she said.

Andrade added that the Canadian League Against Epilepsy is expected to be meeting with Health Canada next week so get an update on the shortage.

“Drug shortages for this particular drug are relatively common, and we don’t have a clear explanation of why they happen,” she said.

“As far as I know, we don’t have a clear plan of how to avoid them in the future.”