Deal struck to help ill aboriginal boy

A temporary deal has been reached to provide a gravely ill 10-year-old aboriginal boy from Alberta with the $17,000-a-week experimental drug he needs to survive.

The Calgary Health Region has agreed to deliver the treatment to Mackenzie Olsen, from the Siksika First Nation east of Calgary, while the federal and provincial governments are figuring out who should ultimately pay the cost.

A spokesperson said Monday that Mackenzie will get the experimental drug Aldurazym at the health region's expense until a more permanent solution is found.

The boy has a rare genetic disease that causes toxins to build up in his cells. Most people with Hurler-Scheie Syndrome, which is caused by the lack of an enzyme called a-L-iduronidase, don't live into their 20s.

Mackenzie had been receiving Aldurazyme for three years in a medical trial that ended two months ago.

His family couldn't afford to pay to continue the treatment, so it announced it was taking legal action against the federal and provincial governments to prod them to come to a solution in their jurisdictional dispute.

Question about who should pay for drug

The company that developed the drug says because it is a hospital-based treatment, the province should pay. Hospital operation is a provincial responsibility.

The province says because Mackenzie is a First Nations member, the federal government should pay. Aboriginal health care falls under federal jurisdiction.

However, Ottawa says the Common Drug Review committee will have to finish evaluating the cost-effectiveness of the drug before deciding whether to cover it.

On the weekend, Federal Health Minister Ujjal Dosanjh said he would work with his Alberta counterpart to make sure Mackenzie gets the care he needs.

"Here you 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, in Calgary for a Friends of Medicare conference on the weekend.

"I would rather not make it a political football," he added. "I don't think that's a wise thing to do."