EDMONTON – Health Canada has approved the drug Naglazyme, the Enzyme Replacement Therapy for Maroteaux–Lamy Syndrome (MPS) VI, a rare enzyme deficiency.
The treatment has been approved for long-term use in enzyme therapy for patients with a confirmed diagnosis of MPS VI.
In mid-August, the Alberta government approved funding to treat three-year-old Aleena Sadwnyk from St. Albert, who has the deficiency.
Aleena was recently diagnosed with MPS, which means she lacks the enzyme needed to break down waste in her body, so it builds up on organs, bones, and muscles.
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“She’s a little girl,” says her father Dane Sadownyk. “She didn’t ask for this, she didn’t deserve it, she should be given every opportunity like any other child to have the best shot, the best chance at life.”
Without treatment, the disease would have cut her life short.
“Her heart valve is affected, her liver and spleen are enlarged, and of course the deposits on the bones,” says her mother Laura Sadownyk. “It will result eventually in death.”
Until now, Naglazyme wasn’t approved in Canada.
Aleena’s family appealed to the province to help cover the cost of the treatment, which is about $300,000 for a year for someone Aleena’s age.
The Isaac Foundation – an advocacy group for children with rare diseases like MPS – previously told Global News that “prior to Alberta’s approval, treatment was already being funded in BC, Saskatchewan, Ontario, and Quebec.”
More to come…
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