Health minister denies life-saving treatment for kids using wrong information

The Sask. Party government denied three children the only treatment that could stop the progression of their painful disease, and now it’s clear it used completely false information to justify that decision.

Sask. Party Health Minister Dustin Duncan denied the Akhter children, aged 8, 10 and 12, their only hope to stop the disease. In explaining his decision, Duncan claimed the drug Vimizim hasn’t been proven effective in treating children older than five. However, Duncan had it completely wrong – the drug is intended for patients over five years old. It’s only patients under five for which Vimizim has not yet been fully tested.

On Monday, Duncan spoke at length about saying no to the life-saving treatment because the kids are older than five. To reporters, he said: “the common drug review process had indicated that there just isn’t enough evidence to prove that the efficacy of this drug, and there doesn’t seem to be, especially when you get over the age of five in this case, that, the longer that it takes for this drug to be administered, the disease progresses to a point where it just becomes a question of whether or not there is efficacy to administering this drug.” He also said: “the outside expert out of our province that did recommend that because these children are over the age of five, it just, there isn’t the evidence that suggests that there would be efficacy involved in providing this drug.”

“The health minister's whole spiel was made up and dead wrong,” said Danielle Chartier, NDP Health critic. “It's bad enough to deny life-saving treatment to kids, but basing that decision on blatantly wrong information is being reckless with three children’s lives. This government needs to get its facts right, and allow these kids to start treatment immediately.”

Sara, 8, Khadjia, 10, and Muhammad, 12, suffer from Morquio A Syndrome, a degenerative enzyme disease that is damaging their bodies more every day. The disease started appearing in the children when each was about four. Now two are using wheelchairs and each are experiencing stunted growth, twisted joints and eyesight, hearing and breathing challenges as a result of the disease.

Vimizim can stop the disease’s progression.

One child in Saskatchewan has received government approval for Vimizim and is taking the drug, along with many patients in other provinces.

“Funding this drug could save three lifetimes of surgeries, therapies and less effective management of the disease,” said Chartier. “On a compassionate basis alone, approving treatment for these kids is absolutely the right thing to do; but if the government dismisses that, they should at least realize they’re costing our health care system a lot more in the long run if they continue to deny these children treatment.”