Newly-approved ALS treatments will now be partially covered by the Alberta government, offering some financial relief to those battling the uncurable disease.
On Aug. 1, the provincial government approved two ALS treatments, both of which help to slow the progression of the disease.
The oral solutions for Albrioza and Radicava are now part of the Alberta Drug Benefit List.
“It is so hopeful to have two therapies approved in such a short period of time, to have drugs that actually slow the course of the disease — and have been shown to slow the course of the disease,” said Wendy Johnston, a neurologist and director of the ALS Clinic.
It’s also been clearly shown with these two drugs “that the disability that ALS poses has developed less quickly when you’re on (these) drugs,” she said.
Johnston said the approval of the therapies gives direct support to ALS patients and reinforces the importance of investing in treatments for the degenerative disease.
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Since ALS is considered a rare disease, the cost for treatment development is much higher, the professor explained. This leads to the cost of the drugs being quite high once they are approved.
The cost for ALS drugs out of pocket “is more than most families can afford,” Johnston said. The government will cover $18,500 a month for the medication, which can cost over $225,000 for a patient’s first year.
“Anybody that is going through that journey is going to be strapped for financial support, so anything that could be offered to assist would be incredible,” said Chris Clark.
Clarks’ dad, Aussie, was diagnosed with ALS in the summer of 2021 and died just over a year later. He was working as a psychiatric nurse up until his diagnosis and within just a few weeks it became clear he wouldn’t be able to do things like drive anymore.
“Over the coming weeks and months, he lost the ability to walk independently, had to use mobility aids. Over the course of the year, as well, he started to lose his ability to feed himself independently, eat, swallow, and subsequently breathe,” Clark said. “And that seems to be a really common trajectory for patients with ALS.
“Because it is such a quickly progressing disease, really anything that can provide patients either with comfort or help to delay the onset of their symptoms would just be incredible, to be honest,” he said.
While these newly-approved treatments will offer a “glimmer of hope” to patients, Clark said he doesn’t think this is the end of the line for ALS treatments and development.
As for the cost, he applauded the provincial government stepping up to help cover the cost of treatments. He said the equipment alone that patients need, including hospital beds and wheelchairs, can cost between $150,000 to $250,000 over the course of a patient’s illness.
This is one of the reasons why he is so passionate about raising money for families still experiencing the disease.
In February, Clark, along with three friends, climbed Mount Kilimanjaro, the largest peak in Africa, to raise funds for ALS research. They surpassed their fundraising goal, raising over $24,000.
— With files from Morgan Black, Global News
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