'Cautious optimism' about ALS drug approved by Health Canada
Published Wednesday, October 10, 2018 3:10PM ADT
Last Updated Wednesday, October 10, 2018 4:08PM ADT
For the first time in nearly 20 years, a new ALS drug has been approved by Health Canada.
Edaravone, a drug that has shown promising results in slowing the progression of the disease, was approved for market in Canada last week.
Some are cautiously optimistic, but there are still several questions that surround this treatment.
Like who can get it, where it will be administered, at the hospital or at home, and most importantly, who will pay for it?
That question has crossed Paul Smith's mind because, Edaravone, the drug that he imports from Japan to treat his ALS, costs nearly $4,000 for a three-month supply. The high cost sometimes forces him to make an excruciatingly difficult choice.
“Do you eat or do you take medication?” Smith said.
Instead of making it more accessible, Smith worries this decision will make it more difficult for patients to get Edaravone.
“If it's relative to what the U.S. charged for this, it will be out of reach for the majority of patients,” Smith said.
When the United States approved Edaravone in 2017, the price shot up to more than $100,000 a year.
“We're not quite sure whether public and private insurers will cover the cost of the drug yet,” said Kimberly Carter, the president and CEO of the ALS Society of New Brunswick and Nova Scotia.“That remains to be seen.”
The ALS Society says it's too early to know much about how the drug will be distributed.
Not even doctors or patients know what will happen.
“It could become more widely available,” Carter said. “That's not what's been happening in the U.S., and so we are cautiously optimistic that Canadian insurers and Canadian provinces might react a little differently.”
Smith takes Edaravone through a PICC line in his arm -- every day for an hour and a half.
It's slowed his symptoms and given him more energy.
Sometimes, Smith can get around in his power chair -- like we saw when CTV Atlantic spoke to him back in June.
But on Tuesday, he was in too much pain, so he had to stay on his bed.
“I compare it to the outside world constantly shrinking and the body's sort of become a prison to itself,” Smith said.
Smith says he knows Edaravone won't cure his disease, but if it helps slow it down, he's all in.
One of the patients CTV Atlantic spoke to in the spring, Andrea Lasaga, passed away this summer.
It shows how quickly this disease can progress, and how devastating it can be, which is why for many people, treatments like Edaravone offer hope.
With files from CTV Atlantic’s Emily Baron Cadloff.