Alberta to cover expensive ALS drug shown to extend lives of patients

Albertans fighting ALS, also known as Lou Gehrig’s Disease, are getting some much-needed help from the province, after it announced it would be covering thousands of dollars a month for some recently approved treatments.

Amyotrophic Lateral Sclerosis (ALS) is a rapid, always fatal neurodegenerative disease, according to the ALS Society of Alberta.

It attacks the nerves of the body that would normally send messages from the brain to the muscle, resulting in weakness and wasting, the organization adds. Eventually, the individual with ALS is left completely immobilized, with loss of speech and an inability to swallow and breathe.

ALS has been nicknamed the bankruptcy disease, as drugs to fight it can cost hundreds of thousands of dollars a year.

But, as of Aug. 1, the province is changing that — covering Albrioza and Radicava, two separate treatments, for up to $18,000 a month.

Emily Penley-Christmas with the ALS Society, says this is a game-changer.

“It’s huge, it’s enormous, there’s not many that can afford it out of pocket without private coverage,” she said. “For everybody, it’s enormous because it means there’s more money for research.”

“Coverage from the province, that can mean the difference between somebody coming and staying off work and retiring so they can spend more time with their family member,” Penley-Christmas added. “It really is opening a lot of doors and how I like to look at it is — it’s removing obstacles.”
Calgarian Ralph Scott, 65, was diagnosed with the disease in 2021.

He explains the suffering it causes is much more than physical symptoms.

“They call ALS the bankruptcy disease, because nobody can afford $10,000 or $20,000 a month,” said Scott.

Doctors gave him 18 months to live.

Scott has been taking the drug Albrioza for the last 14 months, covered by the provider, helping to prolong his life expectancy beyond what physicians thought was possible.

“I know that I have more than 18 months, because I’m already past that,” he said.

He says he has been able to fight the disease thanks to the drug, surviving, and spending more time with his loved ones without the financial burden.

It’s even allowed his wife to retire, allowing them to spend more time together.

“Her future is brighter, even though I have ALS,” he said.

Penley-Christmas, says the benefit will not only be to those fighting to the disease, but to their loved ones; providing peace of mind.

“We can advocate for change, we can raise money, we can fund research — but until then all we can do is remove those barriers, and this is a huge barrier that’s been moved out of the way,” she said.

Scott says this new provincial coverage will remove the financial barrier a lot of patients are facing, allowing them to spend more time with their loved ones, and extend their lives.

“It’s scary at times, but you make the best of it,” he said.

There is believed to be over 400 people in Alberta fighting ALS.

The province joins Ontario, Quebec, B.C., and New Brunswick in providing public coverage.