A Regina woman who has been battling the effects of ALS for the last 15 years says a drug recently approved by Health Canada has made a difference in her life. “Fasciculations, also known as muscle twitching. It started in my legs and then it progressively spread throughout my whole body,” Paula Trefiak explained. Trefiak began seeing the signs of the disease in 2010, but it wasn’t until 2016 when she was officially diagnosed. By the time she was diagnosed, her quality of life had deteriorated. “I was an emergency medical responder. I couldn’t do that work anymore. I was going to school for dental hygiene. I couldn’t hold my instruments anymore. I had to go back to school,” she explained. In 2016, she qualified to participate in clinical trials for a new drug that offered her a glimmer of hope. “I started the clinical trials for QALSODY in November 2016. That trial lasted about six months,” she said. “Afterwards I was invited to participate in the open label extension. During the trial there was a placebo, so I could have been on the drug, I could have been on the placebo.” “Once you start the open label extension, everybody is guaranteed to get the highest, safest dose of the drug.” Trefiak is now on a 100 mg dose. “This drug is a drug that [is] specifically for patients with ALS that is caused by a genetic mutation in the SOD-1 gene. It’s about three per cent of the population of patients with ALS,” said Dr. Angela Genge, a neurologist and Director of the ALS Centre of Excellence at the Neuro in Montreal. The drug has shown significant improvement for the small portion of patients who carry the SOD-1 gene like Trefiak. “My fasciculations and cramping improved. I actually regained six per cent muscle mass that I had previously lost. I’m speaking better.” The drug has been approved by Health Canada but it’s not widely accessible yet. “There are significant negotiations that have to go across Canada. Federal, pan-Canadian and then into a provincial area to be able to make sure that Canadians can get access,”said Tammy Moore, the CEO of the ALS Society of Canada. “We also know that there are drugs that have been approved by Health Canada that never made it through those barriers. We would never want to see that in the case of ALS.”
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