Saskatchewan Government Will Pay for Morquio Syndrome Treatment for Three Children

The Saskatchewan government says it will pay for an unproven drug for three siblings who have a rare and often fatal blood disease.

Health Minister Dustin Duncan says the decision to cover the cost of Vimizim for the Akhter children came after additional review and consultation.

The three children, aged eight, 10 and 12, have Morquio syndrome, which is characterized by skeletal defects such as stunted growth, deformity of the spine and chest, short neck and loose and enlarged joints.

Duncan says the province will cover the cost of the drug for one year to assess its effectiveness.

The drug, 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.

Duncan says 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.

“After hearing the challenges faced by this family, I asked the Ministry of Health to revisit the initial decision and seek additional clinical expertise,” Duncan said in a news release.

“While uncertain of its effectiveness, the specialists we consulted indicated a trial period could establish if this drug may provide any benefit to these children.”

The family’s funding request was turned down by ministry officials at the end of September.

There is one other child in the province who is on the drug.

Source: The Canadian Press