Close X
Sunday, January 12, 2025
ADVT 
National

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.

MORE National ARTICLES

Advocate Says B.C.'s Children In Government Care Need More Social Workers Now

Mary Ellen Turpel-Lafond says the province has fewer social workers now compared to 13 years ago and that the government must hire more by boosting funding for the Children's Ministry.

Advocate Says B.C.'s Children In Government Care Need More Social Workers Now

Northern Gateway naysayers missed their chance to oppose pipeline: CAPP

Northern Gateway naysayers missed their chance to oppose pipeline: CAPP
Lewis Manning told a Federal Court of Appeal in Vancouver that it's a shame that some organizations chose not to take part in the process.

Northern Gateway naysayers missed their chance to oppose pipeline: CAPP

Police Seek Person Of Interest In Death Of Man Shot With Arrow In Kitchener, Ont.

Police Seek Person Of Interest In Death Of Man Shot With Arrow In Kitchener, Ont.
Investigators say a man described as six feet tall and 40 to 50 years old is believed to have been in the area where Michael Gibbon was found on Monday morning.

Police Seek Person Of Interest In Death Of Man Shot With Arrow In Kitchener, Ont.

Mom Seeks Justice For Teen Daughter Carly Fraser After B.C. Refuses To Review 19-Year-Old's Suicide

Mom Seeks Justice For Teen Daughter Carly Fraser After B.C. Refuses To Review 19-Year-Old's Suicide
Carly Fraser died 20 hours and 35 minutes after turning 19.

Mom Seeks Justice For Teen Daughter Carly Fraser After B.C. Refuses To Review 19-Year-Old's Suicide

Winnipeg Community Activist Michael Redhead Champagn Recognized As Future Leader By Time Magazine

Winnipeg Community Activist Michael Redhead Champagn Recognized As Future Leader By Time Magazine
Michael Redhead Champagne, the 28-year-old founder of Aboriginal Youth Opportunities, is featured in an online video and in Time's international print edition.

Winnipeg Community Activist Michael Redhead Champagn Recognized As Future Leader By Time Magazine

CJ Fowler: Video Shows Damien Taylor Exhibiting Normal Behaviour Despite His Testimony

Five minutes of video from the Greyhound depot in Kamloops, B.C., showed Taylor sitting at the door, doing little but looking in his backpack.

CJ Fowler: Video Shows Damien Taylor Exhibiting Normal Behaviour Despite His Testimony