From the Calgary Herald:
Canadians who suffer from rare diseases are calling for a long-awaited national orphan drug strategy as provincial health ministers gather in Quebec City this week, but Alberta's minister is not optimistic they will reach a deal.
Groups like the Canadian Association of Pompe, which represents patients with an unusual neuromuscular condition, said Tuesday the ministers must come to an agreement because patients can't afford the pricey medications for their diseases.
"When you're looking at a rare disease, time is life . . . they go downhill without the treatment," said Linda Pare, the Innisfail-based secretary of the association, whose son suffers from the condition.
Orphan drugs are pharmaceuticals for unusual conditions that often come with enormous price tags, costing as much as $1 million a year.
Alberta Health Minister Ron Liepert agreed a national strategy for drugs to treat rare diseases is important, particularly as the province moves ahead with developing a new pharmaceutical policy. ...more
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