Provincial pharmacare now covers drug to treat ALS

Manitobans diagnosed with ALS have new hope to spend more time with loved ones now that the provincial pharmacare program will cover a new drug that slows down progress of the fatal disease.

Albrioza was added as a benefit under the program on Aug. 24.

It means patients newly diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease, will have the drug fully paid by the province for the year once they reach their annual pharmacare deductible amount.

Tom Fogarty, 66, and his wife of 37 years, Vivianne, said they’re glad they won’t have to spend thousands of dollars on the drug each month.

“This new drug has given me, I find, hope and the gift of more time with my family and friends, to laugh out loud, and shed some tears, taking away some of the doom and gloom of this journey we are on together,” Fogarty said on Friday via the speech app on his iPad.

“We’ve been told this drug would cost us around $3,500 to $4,000 per month if we had to pay for it,” Vivianne said.

Fogarty, who worked making doors and windows at a company, began noticing ALS symptoms in 2019. He was diagnosed with the disease in April 2020.

Vivianne said her husband has been taking the drug since January 2022. She said he was one of six Manitobans approved to receive the drug for free from Amylyx Pharmaceuticals Canada, the company that produces it for the world market at a facility in Ontario, before it was listed by the pharmacare program.

She said by the time her husband began taking the drug he was using a cane, but, while the median survival rate from diagnosis is two years, just a few months short of two years later, Fogarty is still able to get around with a walker and cycle around the neighbourhood on a specialized bike.

Chris Aiello, Amylyx’s general manager for Canada, said he is pleased Manitoba has approved the drug for coverage. He said the company is working with other provincial, federal and territorial drug plans to add the drug.

“It is a devastating disease,” Aiello said. “The diagnosis is an extremely difficult one to work through when you hear it.

“We’re excited to be able to slow this disease now, but our goal is to stop it completely.”

A spokesperson for the Manitoba pharmacare program said the drug will be covered as long as a doctor prescribes it to patients and they meet, and continue to meet, the prescribing criteria.

To receive Albrioza, a patient must have a definite diagnosis of ALS, as well as had symptoms for 18 months or less, and not need permanent non-invasive or invasive ventilation.

The drug has to be approved annually and it will be discontinued if a patient becomes non-ambulatory and can’t cut food and feed themselves without assistance, even if they have a feeding tube, or if they need permanent non-invasive or invasive ventilation.

The drug comes in a sachet and is ingested after being mixed with water.

Diana Rasmussen, executive director of the ALS Society of Manitoba, said Albrioza, along with another drug approved for ALS back in 2006 is not a cure.

“It is used for treatment of ALS and the possibility of extending functional independence,” Rasmussen said. “We now need to get the word out and get people diagnosed with ALS sooner.

“We are delighted the government has approved it. When all of these new drugs come out, they are very expensive. We’re very happy.”

As for the drug itself, Rasmussen is glad it is here, but hopes it is one more step toward a cure.

“I’ve been with the ALS Society for well over 40 years now… there was only one drug in 2006 and here we are in 2023 and there is a second one. “I hope we can get a cure soon because this is a fatal disease and it progresses quickly.”

[email protected]