Who was it that was talking about how great socialized medicine in Canada was?
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CALGARY - The father of a nine-year-old boy suffering from a rare genetic illness says his son is caught up in government bureaucracy that could cost him his life, after the federal government refused to pay for his expensive experimental treatment.
"To let a small child suffer for politics? Funding? Does that make sense to anyone?" Raymond Amato said.
His son, Mackenzie Olsen, has Hurler-Scheie Syndrome, which is caused by the lack of an enzyme called a-L-iduronidase.
The enzyme helps the body recycle cells after they die. Without it, cells don't break down and cell deposits are stored in virtually every cell of the body. This causes progressive damage to the heart, bones, joints, and respiratory and central nervous systems.
The boy has been part of an international clinical trial for three years, receiving the drug - which costs $17,000 a week - for free. Amato says the drug eats up the buildup of toxins and keeps Olsen's body from swelling.
But the trial is over, and because Olsen is from the Siksika First Nation, the province won't cover the cost, saying it's a federal responsibility.
Health Canada says the drug is under review, so it won't pay for it.
The boy has about 50 per cent of his sight and hearing, but can live a relatively normal life and go to school as long as he is taking the drug.
Federal Health Minister Ujjal Dosanjh said despite the urgency of the case, it's up to the drug review panel to make the decision.
"I understand the angst and anxiety but I must tell you there's a process that's involved before that happens," Dosanjh said. "It is a common drug review that provinces and the federal government engage in to determine which drugs can be paid for, based on whether or not those drugs are beneficial."
The Assembly of First Nations doesn't buy that argument.
"We want somebody to take up the responsibility, otherwise the blood is going to be on somebody's hands," Alberta regional chief Jason Goodstriker said.
The assembly has written to federal and provincial health officials, as well as the pharmaceutical manufacturer, urging them to continue the treatment.
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