The Saskatoon Government has decided to fund the costs for an unproven drug for three siblings who have a rare, and often fatal, blood disease.
After reviewing the case, Health Minister Dustin Duncan decided it was worth covering the cost of Vimizim for the Akhter children. The three children, aged eight, 10 and 12, have Morquio syndrome, which manifests as skeletal defects such as stunted growth, deformity of the spine and chest, short neck, and loose and enlarged joints.
The government will pay for the drug for one year to determine its effectiveness. The drug, which costs $500,000 per child per year, is not a cure. Initial tests show its effective in slowing down the disease in children under five.
Despite Saskatoon forgoing the funds, Duncan reiterated coverage for Vimizim would be made on a case-to-case basis.
“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 initial funding request to the government was turned down by ministry officials at the end of September.
There is only one other child in the province who is using Vimizim.