Racism & Children-XPosted
Father of sick 10-year-old looking for provincial assistance
15/04/2005 6:53:00 PM
CALGARY (CP) - A gravely ill aboriginal boy is holding his own despite having to drop the treatment for his rare disease because its too expensive. "His doctor said it won't show anything significant for three months because he is still getting 40 per cent of the drug," said Raymond Amato, the father of 10-year-old Mackenzie Olsen.
Olsen 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 received subsidized treatments as part of an international drug trial of Aldurazyme for the past three years, but the test is now complete and enzyme replacement therapy costs $17,000 per week.
It's not being covered by the First Nations and Inuit Health Branch of Health Canada. The drug is being reviewed by the federal government to see whether it should be covered by health care.
Amato wants interim funding until the review is completed, but Ottawa said no. He is now asking for help from the Calgary Health Region and the Alberta government.
"There are children being treated now for the same disorder in Ontario and B.C. that are being treated right now and covered by the province and health region in their area," he said.
Last month federal Health Minister Ujjal Dosanjh told reporters he was sympathetic but wasn't able to get personally involved.
"My heart goes out to them. I understand the band, in the interim, is providing for the medication," he said on March 24.
"Unfortunately I'm not God, and I don't have solutions to these kinds of very, very difficult issues. If a politician stepped up every day there was a problem like this, I think we wouldn't have a system that had any credibility." (the disease is rare. it doesn't occur every day--is it racism? bet your ass it is)
There is only enough money left for another two weeks worth of treatments, said Amato. After that, Mackenzie, who has already lost half of his hearing and sight, will continue to go downhill.
"It's unimaginable that we've actually got something that finally works and now it's got to go through a review and it doesn't make sense that they keep throwing it back and forth," he said.
An official with the Calgary Health Region said Mackenzie's case does fall under federal jurisdiction.
"We appreciate the support the family has so far received from their aboriginal communities but it is the responsibility of the federal government to look at this issue in a timely fashion," said Leanne Niblock.
"We will make every effort to ensure the health of this child like we do with every patient," she said.
Alberta Health Minister Iris Evans has written her federal counterpart on behalf of Mackenzie, said a health department spokesman, adding there will be no money from the province.
"It's federal jurisdiction," said Howard May. "They should fulfil their responsibility."
Children suffering from rare disease Hurler-Schele Syndrome don't usually live past the age of 20. Amato is realistic about his son's chances but wants him to survive as long as possible.
"He's never going to grow like a normal adult and we have to use the opportunity to keep him as normal as we can with these treatments," Amato said.
"Just keeping him alive isn't necessarily the goal here. It's the quality of life while he is alive. Even if we get everything we want he's still only going to be a teenager," he said.
15/04/2005 6:53:00 PM
CALGARY (CP) - A gravely ill aboriginal boy is holding his own despite having to drop the treatment for his rare disease because its too expensive. "His doctor said it won't show anything significant for three months because he is still getting 40 per cent of the drug," said Raymond Amato, the father of 10-year-old Mackenzie Olsen.
Olsen 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 received subsidized treatments as part of an international drug trial of Aldurazyme for the past three years, but the test is now complete and enzyme replacement therapy costs $17,000 per week.
It's not being covered by the First Nations and Inuit Health Branch of Health Canada. The drug is being reviewed by the federal government to see whether it should be covered by health care.
Amato wants interim funding until the review is completed, but Ottawa said no. He is now asking for help from the Calgary Health Region and the Alberta government.
"There are children being treated now for the same disorder in Ontario and B.C. that are being treated right now and covered by the province and health region in their area," he said.
Last month federal Health Minister Ujjal Dosanjh told reporters he was sympathetic but wasn't able to get personally involved.
"My heart goes out to them. I understand the band, in the interim, is providing for the medication," he said on March 24.
"Unfortunately I'm not God, and I don't have solutions to these kinds of very, very difficult issues. If a politician stepped up every day there was a problem like this, I think we wouldn't have a system that had any credibility." (the disease is rare. it doesn't occur every day--is it racism? bet your ass it is)
There is only enough money left for another two weeks worth of treatments, said Amato. After that, Mackenzie, who has already lost half of his hearing and sight, will continue to go downhill.
"It's unimaginable that we've actually got something that finally works and now it's got to go through a review and it doesn't make sense that they keep throwing it back and forth," he said.
An official with the Calgary Health Region said Mackenzie's case does fall under federal jurisdiction.
"We appreciate the support the family has so far received from their aboriginal communities but it is the responsibility of the federal government to look at this issue in a timely fashion," said Leanne Niblock.
"We will make every effort to ensure the health of this child like we do with every patient," she said.
Alberta Health Minister Iris Evans has written her federal counterpart on behalf of Mackenzie, said a health department spokesman, adding there will be no money from the province.
"It's federal jurisdiction," said Howard May. "They should fulfil their responsibility."
Children suffering from rare disease Hurler-Schele Syndrome don't usually live past the age of 20. Amato is realistic about his son's chances but wants him to survive as long as possible.
"He's never going to grow like a normal adult and we have to use the opportunity to keep him as normal as we can with these treatments," Amato said.
"Just keeping him alive isn't necessarily the goal here. It's the quality of life while he is alive. Even if we get everything we want he's still only going to be a teenager," he said.