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Ontario to fund new drug for ALS — the disease that killed Borje Salming


Ontario is the first province to cover a new drug for ALS, slowing progression of the neurological disease that eventually leaves patients unable to swallow and breathe.

Also known as Lou Gehrig’s disease, amyotrophic lateral sclerosis is diagnosed in about 1,000 Canadians annually and it is important to get new therapies to patients quickly, chief executive officer Tammy Moore of the ALS Society of Canada said after Ontario gave the medication Albrioza the green light Wednesday.

“It’s a really tough disease,” Moore added. “Most people will pass away in two to five years.”

Former Toronto Maple Leaf great Borje Salming died of ALS in November, days after an emotional tribute to him at the Air Canada Centre.

Ontario’s placement of Albrioza, made by Massachusetts-based Amylyx Pharmaceuticals, on the province’s public drug plan follows its approval by Health Canada last June.

Moore said the medication becomes one of three drug therapies available to ALS patients and is “another tool for clinicians to offer.”

A statement from the office of Health Minister Sylvia Jones said “an early phase clinical study of Albrioza demonstrated slowed disease progression, with an additional clinical study underway to provide additional insight.”

It is available under the “exceptional access” category of the Ontario Drug Benefit Program to patients who meet the criteria. Some Ontarians may already have coverage under private drug plans.

The cost of the drug, placed on the Ontario formulary after a yearlong negotiating process, was not immediately available.

Moore said she hopes other provinces and territories quickly follow Ontario’s lead. About 3,000 people across the country have ALS and roughly one-third of them die every year.

“We don’t think it’s fair that people who have been given a terminal diagnosis have to wait.”

Speaking for Amylyx, head of Canadian operations Chris Aiello hailed Ontario’s move as a “milestone.”

The company, which is using its Whitby facility just east of Toronto as a manufacturing hub for its global supply of the drug, said Albrioza can slow the decline in ALS patients “potentially giving them more functional independence” for a longer period.

As the disease progresses, people increasingly lose motor function, making it more difficult to feed and dress themselves before they lose the ability to speak, swallow and breathe.

Moore said getting patients on medication as quickly as possible is also crucial because it can take many months to get a firm diagnosis given the wide variety of symptoms that ALS can show in its early stages.

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