Alberta will cover pricey drug believed to extend and enhance lives of ALS patients

Albertans living with ALS, commonly referred to as Lou Gehrig's Disease, have a new treatment option that can improve their quality of life and help them live longer — one the Alberta government will cover for the estimated $18,500 a month per patient. 

On Aug. 1, the province added the trademark drug, Albrioza, to the Alberta Drug Benefit List, which allows eligible patients to be reimbursed for the cost of the treatment. 

Alberta joins Ontario, Quebec, British Columbia and New Brunswick to provide public coverage for the drug. 

It's more than a year after Health Canada conditionally approved the drug in June 2022.

Leslie Ring-Adams, executive director of the ALS Society of Alberta, said the timeline has been too long for people with the disease, for which there is no known cure. 

"Our families don't have the luxury of time," Ring-Adams said in an interview. "Things need to be quicker on the regulatory process." 

People with ALS — amyotrophic lateral sclerosis, a gradual wasting away of nerve cells in the brain and spinal cord — live about two to five years after the onset of symptoms. 

The first signs of ALS include weakness in a leg, hand or the face, or having a hard time talking or swallowing, Alberta Health says on its website. 

As motor neurons slowly die, ALS causes muscle twitching, trouble using hands and fingers, problems with speaking, swallowing, eating, walking, and breathing.

Dr. Theodore Mobach, a neurologist and director of the ALS clinic in Calgary, said trials are showing that Albrioza helps slow the death of the motor neuron cells. 

It's difficult to gauge how well the medication is working for an individual, he said, but they're getting a sense of the drug's efficacy based on the group of patients.

The American-based Amylyx Pharmaceuticals, which manufactures Albrioza, conducted a clinical trial in 2020.

"Based on that trial, the patients who got the medication Albriosa progressed at a slower rate than the patients who are on placebo," Mobach said.

"It's a modest, but statistically and likely clinically significant benefit."