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Canadian Children's Rights Council - Conseil canadien des droits des enfants

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Parents plead for treatment to aid sick kids
Health ministers asked to provide drug coverage for rare disorders

The Toronto Star, DENNIS BUECKERT, Canadian Press, Oct. 23, 2005

Health ministers were confronted yesterday by desperate parents who say governments are condemning their children to death by refusing to cover drug treatments for rare disorders.

Ontario Health Minister George Smitherman had briefly left the closed-door meeting on a bathroom break when he found himself being introduced to Jasmine Sekhon, 7, who suffers from a rare condition called MPS, or mucopolysaccharide.

"I need my IV back," Jasmine told the minister, referring to intravenous infusions that have proven effective in treating the debilitating and eventually fatal condition.

"Well that's what we're working on here, today," said Smitherman, offering the first indication that coverage of rare conditions is on the ministers' agenda for their weekend meeting.

Jasmine received the drug as part of a clinical trial, but when the trial ended she was denied further treatment. Her brother Anmoldeep, who has the same condition, was also cut off.

"The government is not paying, the hospital is not paying, the company (that manufactures the drug) is not paying," said Joginder Sekhon, uncle and guardian of the two children. "We're left alone and it's a very devastating thing."

Jasmine is one of six Ontario children with MPS who will die unless the provincial government covers the treatment, said Kirsten Harkins, executive-director of the Canadian MPS Society.

She said the treatment, which costs $350,000 a year, is covered in British Columbia, Alberta, Saskatchewan, Quebec and Newfoundland and Labrador, but not in the other provinces.

Fabry's disease is another debilitating illness that can be treated, but only at a cost that provincial governments have been reluctant to cover. The variation in drug coverage is a major sore point for critics of Canada's balkanized health system, where each province tends to set its own policies.

Harkins says her son Nicholas has been on the therapy for two years and it has stopped the progression of his illness. She said Canada needs a national policy on so-called "orphan" drugs.

MPS victim Mackenzie Olsen, 10, is continually smiling although he wears two hearing aids and has an odd way of walking because of his disease. He was one of the first in Canada to receive the drug but was also cut off.

Working through an aboriginal association, Mackenzie's parents were able to get treatment in Calgary, but they worry they could get cut off again.

"It's a death sentence," said the boy's father Raymond Amato. "He will not last without the treatment. He'll start deteriorating. All these children will. Let's get all these kids on treatments."

Yukon Health Minister Peter Jenkins told Mackenzie's parents they should be lobbying federal Health Minister Ujjal Dosanjh on the issue.

Dosanjh in fact met with Mackenzie's parents privately, and there are hopes this weekend's meeting will produce an announcement on the drug issue.