Federal health minister says he will meet with father of dying Alberta boy

“JUDY MONCHUK Sun May 1, 9:34 PM ET
CALGARY (CP) – Canada’s health minister says he is willing to meet with the father of a gravely ill aboriginal boy who wants Ottawa to cover the expensive drug therapy needed to keep his son alive.
“I’d be happy to speak with him,” Ujjal Dosanjh said Sunday after attending a Friends of Medicare conference where he stressed that all Canadians should have access to health care.
Mackenzie Olsen received his last treatment on Friday and now his family has no way to cover the costs.
Dosanjh and Alberta Premier Ralph Klein have both said the other level of government should foot the $17,000-a-week bill for 10-year-old Mackenzie’s enzyme replacement therapy.
But on Sunday, the federal health minister said the financial argument is missing the larger issue.
“Here we have a 10-year-old young man whose life is at stake and I want to make sure we do the right thing,” said Dosanjh, adding that he wants to discuss the issue with Alberta Health Minister Iris Evans in the next few days.
“I’d rather not make it a political football, I don’t think that’s wise.”
Lawyers for the boy will be in court Tuesday seeking an interim mandatory injunction requiring the Calgary Health Region to continue his treatment.
The boy, from the Siksika First Nation east of Calgary, suffers from a rare disease called Hurler-Schele Syndrome caused by the lack of an enzyme called a-L-iduronidase. He was part of an international drug trial for the past three years which allowed him access to Aldurazyme, but the trial has been completed.
The treatment, which costs $17,000 per week, is not covered by the First Nations and Inuit Health Branch of Health Canada. The federal government is reviewing whether the drug should be covered by health care.
Mackenzie has already lost half of his sight and hearing, but with the treatment, he could live a relatively normal life and attend school. The disease is ultimately fatal.
Conservative MP Diane Ablonczy said Mackenzie should get access to the medication immediately and there should not be a political squabble.
“You shouldn’t hold a kid hostage to some sort of bean-counting test,” Ablonczy said in Calgary.
“It’s not about ‘we would-they would’ – it’s common sense,” she said. “The kid needs medication, the kid’s been on medication, the medication is being ripped away. Why? Because some tests have to be done by bureaucrats? None of that makes sense to anybody.”