'You cannot just stop these medications': no end in sight for Parkinson's drug shortage

1 / 2

'You cannot just stop these medications': no end in sight for Parkinson's drug shortage

'You cannot just stop these medications': no end in sight for Parkinson's drug shortage

Bob Campbell went to the pharmacy in early January to fill his amantadine prescription and was told it couldn't be filled because of a shortage of capsules.

For nearly 20 years, Campbell has lived with Parkinson's disease and assumed he'd be able to pick up his prescription, as he'd done so many times before. The drug helps improve muscle control for people living with the disease.

"This time they said they're having trouble getting it," said the Moncton resident, who has a slight tremor in one hand but is typically able to manage his symptoms quite well. 

Weeks later, Campbell was still waiting and knew he was going to run out fast. 

So Campbell turned to his neurologist for advice.

"He suggested rather than taking two a day, I cut back to one a day, and that way I would spread out the drugs that I had," he said.

Often, the smaller dose would wear off more quickly.

"I noticed the difference from going from two meds a day to the one."

"I know what I would do without my meds," said Campbell with a laugh. "I'd be incapable of functioning because I'd be sort of dancing around everywhere I went."

While it's not as convenient, Campbell has since discovered Amantadine in a syrup form and has gone back to his regular dose.

"I actually still have 10 [pills] left but I've been saving them since I got the syrup because if I go away for the day I'd like to be able to have that to take with me, and not have to carry a mug."

Not for everyone

But not all Parkinson's patients are able to take a liquid form of the drug.

Jacquie Micallef, senior manager of public affairs and partnership with Parkinson's Canada, said, "taking a capsule is much easier than trying to dose and administer yourself a syrup."

Parkinson's Canada was alerted about the drug shortage back in January.

Micallef said the pill's manufacturer was not producing enough medication to be able to provide capsules to those who need it.

Since the capsules were not available, Micallef said, "there was a run on the syrup and then the syrup of course dried up because people who were on the capsules … went and took the syrup."

Earlier in the year, Micallef said some patients had to go without the drug entirely in places like Ontario and Saskatchewan.

The drug's manufacturer, Pendopharm, told CBC News it ramped up production of the syrup, until everyone who needed the drug had access to it. 

No end in sight

The company won't go into detail as to why the pill form is not available. In an email, the manufacturer said the capsules aren't available on the Canadian market, "as a result of manufacturing process issues."

The company also won't say when people can expect the drug to be available again.

Micallef finds the situation extremely concerning.

"Because there is no cure, because there is no way to delay onset, the only things people can do is manage their symptoms and that helps them stay in the community, it helps them in some cases continue working and staying engaged," she said.

"So when you have drugs especially that are impacting people neurologically, you cannot just stop those medications because there could be really serious consequences to stopping abruptly."

For patients like Bob Campbell, this has been nothing short of a learning experience.

"You don't think that that could happen," he said.

"You don't expect you're going to get any kind of illness or disease but at the same time, when you find there's any sort of treatment that's effective, you expect it to continue to be available."