Canadians with ALS fear lengthy wait for new, potentially life saving drugs

ALS patient Norman MacIsaac wants to see the drug approved.

MONTREAL — Several clinical trials are underway for several different ALS treatments but some Canadians living with the disease say their access to new drugs could be stalled for years by Health Canada’s review process.

“It’s basically a situation where we are dying while waiting for a cure,” said Norman MacIssac, who lives with the disease.

The average life exectancy for someone diagnosed with ALS is two to five years. MacIssac has been living with it for six.

Awareness of ALS peaked six years ago with the viral success of the Ice Bucket Challenge. Participants raised $220 million for research and today there are more than 90 treatments undergoing clinical trials. Many of those treatments will be up for approval around the world in 2021.

Tammy Moore of the ALS Society of Canada said Health Canada’s process for reviewing and approving a drug could add another two or three years to the wait.

“For our community, if you’re given an ALS diagnosis and you’re givin three to five years to live, the sooner you can get access to those therapies is such a critical piece of it,” she said.

MacIssac said the federal government must streamline the approval process for ALS drugs.

“We’re saying to the minister of health, please make those treatments available in a matter of weeks and months, not years,” he said.