8 October, 2015 mcfadyena

Provincial opposition says drugs for sick kids denied over false information

Expert says drug would work well for Akhter children

CBC News Posted: Oct 08, 2015 11:15 AM CT Last Updated: Oct 08, 2015 11:15 AM CT

Sara Amir, 8, Khadija Amir, 10, and Muhammad Abdullah, 12, all suffer from a crippling enzyme deficiency that threatens their lives. (Kathy Fitzpatrick/CBC)

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The provincial New Democratic Party says Health Minister Dustin Duncan shouldn’t have refused drug coverage for three children.

Sara, Khadji and Muhammad Akhter all suffer from a degenerative enzyme disease called Morquio A Syndrome.

The province has denied drug coverage to the children, stating that the drug is not effective in children over five.

However, the NDP disagrees, saying that the drug’s manufacturer states that it is safe for children five years and older.

The disease can be life-threatening. Without the missing enzyme, cellular waste builds up in the bones, tissues, organs and muscles.

The condition is stunting the children’s growth, twisting their joints, affecting their eyesight and hearing, and making it tough for them to breathe. Two of them use wheelchairs at school.

Health Minister Dustin Duncan said he is looking for a second opinion on whether the province should pay for the drug. He said the original decision to deny funding the drug was based on medical opinion from the Common National Drug Review and on the recommendation of an out-of-province specialist.

Still, Duncan said he understands that timeliness is a factor, and said the decision will be communicated directly to the Akhter family.

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