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Saskatoon Children With Rare Disease To Have $500,000 Drug Covered By Province

Darpan News Desk The Canadian Press, 05 Nov, 2015 10:59 AM
  • Saskatoon Children With Rare Disease To Have $500,000 Drug Covered By Province
REGINA — A Saskatoon father says it is "awesome" the provincial government has agreed to pay for an proven and costly drug treatment for his three children, who have a rare and often fatal blood disease.
 
Muhammed Akhter says when he got the phone call from the health minister he had to ask the woman on the line three times to repeat what she was saying.
 
He calls it "life-changing news."
 
Akhter's three children, ages 8, 10 and 12, suffer from Morquio Syndrome, a rare disease that causes problems with bone development and produces other complications.
 
The disease has already put two of Akhter's children into wheelchairs.
 
A drug called Vimizim, which costs $500,000 per child per year, is not a cure, although studies indicate it is effective in slowing down the disease in children under five.
 
Originally, the province denied coverage for the drug, citing consultations with an outside doctor that found the medication might not prove effective for the children who are older than five.
 
The decision was reversed this week 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 he's hopeful the treatments will help his children have a more normal quality of life.
 
"Although they're smiling all the time, having this news, they're (even) happier now," he said.
 
Health Minister Dustin Duncan has said any further decision to provide coverage for Vimizim will be made on a case-by-case basis, and will rely on out-of-province specialist recommendations.

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