Close X
Tuesday, January 28, 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

Alberta's Outgoing U.S. Representative Rob Merrifield Blasts NDP On Last Day Of His Contract

Alberta's Outgoing U.S. Representative Rob Merrifield Blasts NDP On Last Day Of His Contract
Rob Merrifield said Wednesday that Premier Rachel Notley's decision to dismiss him comes as Washington grapples with key economic and trade issues that are critical to the province.

Alberta's Outgoing U.S. Representative Rob Merrifield Blasts NDP On Last Day Of His Contract

TV Porn For Prisoners A No-No, Says Quebec Public Security Minister

TV Porn For Prisoners A No-No, Says Quebec Public Security Minister
Lise Theriault said she was "horrified" when she learned that prisoners at a detention centre in Amos, about 600 kilometres northwest of Montreal, had been watching porn on TV with cable access.

TV Porn For Prisoners A No-No, Says Quebec Public Security Minister

Ex-Lieutenant-Governor Lise Thibault To Remain In Jail Until At Least Tuesday

Her lawyer, Marc Labelle, wanted to seek leave to appeal today, a day after Thibault was sentenced to 18 months in jail on fraud and breach of trust charges. 

Ex-Lieutenant-Governor Lise Thibault To Remain In Jail Until At Least Tuesday

Washouts, Damage To Homes Reported In New Brunswick After Major Downpour

Washouts, Damage To Homes Reported In New Brunswick After Major Downpour
The province's Emergency Measures Organization says the downpour Wednesday and early today damaged infrastructure and closed roads.

Washouts, Damage To Homes Reported In New Brunswick After Major Downpour

Marcel Aubut Steps Down As COC President As Sexual Harassment Investigation Begins

Marcel Aubut Steps Down As COC President As Sexual Harassment Investigation Begins
The COC received a complaint last Friday about Aubut and has retained Francois Rolland, former Chief Justice of the Quebec Superior Court, to head an independent investigation.

Marcel Aubut Steps Down As COC President As Sexual Harassment Investigation Begins

John Horgan, Christy Clark Spar Over Death Of Teen In Government Care

Alex Gervais fell from a fourth-floor window of an Abbotsford hotel on Sept. 18, and children's representative Mary Ellen Turpel-Lafond has said she believes he killed himself.

John Horgan, Christy Clark Spar Over Death Of Teen In Government Care