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A Saskatoon family is still basking in the good news after learning the province will pay for a costly drug treatment for three children.
Muhammed Akhter`s three kids, ages eight, 10 and 12, suffer from Morquio Syndrome. The rare disease affects about 100 people in all of Canada. It causes problems with bone development, along with other complications and can often prove fatal.
The disease has already caused two of Akhter’s children to be confined to wheelchairs.
While there is no cure, treatment with a drug called Vimizim has been shown to slow or halt the progression of the disease.
Costing $500,000 for a year of treatment, Vimizim is among the most-expensive prescription drugs in the world.
Originally, the province denied coverage for the drug, citing consultations with an outside doctor that found the medication might not prove effective in children over five years old. That decision was reversed on Tuesday after the province got more input from other doctors. The ministry agreed to cover Vimizim treatments on a trial basis for one year.
Akhter said it took him a while to believe the good news when he got a phone call from the health ministry informing him of the decision.
“It was awesome — I had to ask (that lady) three times what the decision was … it was life-changing news, actually. So we were very happy about that” he said.
Now, he said he’s hopeful the treatments will help his children have a more normal quality of life. He said it’s been tough as they’ve grown up and noticed that they’re significantly smaller than other kids in their school, and haven’t been able to do simple things, like go into a Tim Horton’s on their own for a snack.
Akhter said he’s told his children those days may be coming to an end.
“Although they’re smiling all the time, having this news, they’re (even) happier now,” he said.
Akhter said he wanted to thank the province for its decision, along with all the people who helped his family navigate the process of getting coverage.
