Sick boy lacks full treatment, as governments debate who pays

An aboriginal boy whose rare genetic disordersparked a national debate two years ago over which government should pay for his drugs is still not receiving the full treatment for his illness.

Mackenzie Olsen, 12, who was originally from the Nacho Nyak Dun First Nation in Mayo, Yukon, but is currently based on the Siksika First Nation east of Calgary, visitedfamily inthe Yukonearlier this week.

The boy has Hurler-Scheie Syndrome, a disease that causes toxins to build up in his cells and cause progressive damage to his heart, bones, joints, and respiratory and central nervous systems. Most people with the disorder, caused by the lack of an enzyme called a-L-iduronidase, do not live into their 20s.

Mackenziereceives weekly injections of Aldurazym, a new enzyme drug that keeps his body from shutting down and could prolong his life. A full treatment costs $14,000 per week.

However, as a result of the dispute between the governments, Mackenzie receives only the amount of the drug that the province of Alberta feels it should pay for— or 40 per cent. His parents say the federal government is so far contributing nothing.

"He's hooked up to a machine for about six hours a day," his mother Mary Ann Olsen said Tuesday, adding that the drug is injected through a port in Mackenzie's chest. "Every Friday he's usually in."

But Olsen said because her son is not receiving the full amount of medication he still suffers as a result.

"If he sits down and gets up from the floor he has a hard time," she said. "I have to go help him or he'll get up on his knees, then he's a little bit stiff when he starts walking. And once he starts walking and gets mobile, he'sOK after that."

Mackenzie made headlines in 2005, when the free clinical trial for Aldurazym ended and the family said they could not afford the full cost of treatment. At the time, the Calgary Health Region agreed to cover 40 per cent of the treatments, but no one came forward to pick up the rest of the tab.

The company that developed Aldurazym said the Alberta government should pay because it is a hospital-based treatment. Hospital operation is a provincial responsibility.

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

In 2006, federal Health Minister Tony Clement vowed to help the family. But Olsen said there has been no word from Ottawa since on whether it will contribute to Mackenzie's treatment. She said it would be nice for governments to pay for his treatment now, then bicker over jurisdiction later.

"I think that would be nice, yeah," she said. "He's starting to get stiff in his legs, and you can see it when he's running and stuff. But still that doesn't stop him."

End intergovernmental dispute, medical journal says

In an editorial published Tuesday, the Canadian Medical Association Journal urged the federal, provincial and territorial governments to stop arguing, pay medical treatment bills for First Nations children like Mackenzie Olsen, then settle up after treatment is given.

In the editorial, titled "Jordan's Principle, governments' paralysis," the journal endorsed "Jordan's Principle," which was named after a Manitoba child who had suffered from a rare neuromuscular disorder.

Jordanwas moved off the Norway House Cree Nation reserve in 1999 for treatment, but died in a Winnipeg hospital at the age of four, while the federal and Manitoba governments argued over who would pay his medical bills.

"Jordan's interests fell a distant second; intergovernmental squabbling over the duty to pay came first," the editorial, written by Dr. Noni MacDonald and University of Ottawa law professor Amir Attaran, read in part.

"Many of the services Jordan needed would be paid for without question for a white Manitoban, or off-reserve aboriginal resident. It was Jordan's living on reserve that caused the bureaucracy to choke. That is discrimination pure and simple."

The editorial added that if governments ignore Jordan's Principle and continue to put financial and jurisdictional battles ahead of First Nations children, "then governments deserve to be sued, in the most winnable test case that First Nations' advocates can manage.

"Let the courts decide, if the bureaucrats and politicians continue to refuse to find a timely resolution."

While Mackenzie Olsen's family continue to wait for word from Ottawa, Mary Ann Olsen said she worries.

"We try not to," she said. "We had a little scare there when he was going through some testing, but … we don't say nothing. Just keep on doing things."