12-year-old Madi Vanstone needs the new drug Kalydeco to live a normal life. The Beeton, Ontario girl suffers from a rare form of cystic fibrosis and only Kalydeco, a drug made by Vertex Pharmaceuticals of South Boston, Mass. treats the underlying cause. The problem with Kalydeco is that Vertex demands a price for it which many physicians in the U.S, say is unconscionable. Shortly after the drug was approved for use by the U.S. drug agency early in 2012, a group of 24 doctors who had worked on the project wrote to Vertex to complain. “We have invested our lives and careers toward the success of these inspiring therapeutic agents. We also write with feelings of dismay and disappointment that the triumph and honour that should be yours is diminished by the unconscionable price assigned to Kalydeco.” In Canada, the Ontario government estimates that a year’s treatment would cost $340,000. In the U.S., Vertex has set the price at $307,000 for a year’s treatment. In Germany, the price is said to be $450,000 per person per year. Alberta and Ontario have been among the Canadian negotiators with Vertex in efforts to negotiate a reasonable price. The medication’s effectiveness is apparently profound, the result of what is known as “rational drug design.” The process relies less on trial and error and focuses instead on known genetic factors which, if attacked directly, might lead to the kind of improvement which Kalydeco provides for patients taking it. Those who may be helped by it are few — perhaps no more than four percent of cystic fibrosis sufferers can benefit. Madi is apparently one of these, a carrier of the G551D gene mutation. She knows it works because friends, relatives and ordinary people raised enough money to get her started on it. The medication transformed the girl’s life. Today, Madi and her mother Beth were told by Premier Wynne and Health Minister Matthews the drug is not yet covered by OHIP because the price is still under negotiation. Some provinces have banded together to use their collective buying power to cut drug costs. Alberta, which is leading the talks on Kalydeco, has made three proposals to the drug maker Vertex, but it has rejected each one, the Premier said. It’s not responsible for Ontario to undermine other provinces, she added. “Of course we don’t put a price on a human being’s life,” she told the Legislature. But a former health minister called her response “complete garbage.” The governing Liberals could fund the drug tomorrow if they wanted to, said Progressive Conservative Jim Wilson. The Opposition is recalling the long and depressing history of misspent money in response to the Kalydeco issue. Photos: Madi speaking after meeting Premier, Vertex location in South Boston, Madi with PC MPP Jim Wilson (Simcoe-Grey)Madi’s life-saving drug costs $340,000 a year
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12-year-old Madi Vanstone needs the new drug Kalydeco to live a normal life. The Beeton, Ontario girl suffers from a rare form of cystic fibrosis and only Kalydeco, a drug made by Vertex Pharmaceuticals of South Boston, Mass. treats the underlying cause. The problem with Kalydeco is that Vertex demands a price for it which many physicians in the U.S, say is unconscionable. Shortly after the drug was approved for use by the U.S. drug agency early in 2012, a group of 24 doctors who had worked on the project wrote to Vertex to complain. “We have invested our lives and careers toward the success of these inspiring therapeutic agents. We also write with feelings of dismay and disappointment that the triumph and honour that should be yours is diminished by the unconscionable price assigned to Kalydeco.” In Canada, the Ontario government estimates that a year’s treatment would cost $340,000. In the U.S., Vertex has set the price at $307,000 for a year’s treatment. In Germany, the price is said to be $450,000 per person per year. Alberta and Ontario have been among the Canadian negotiators with Vertex in efforts to negotiate a reasonable price. The medication’s effectiveness is apparently profound, the result of what is known as “rational drug design.” The process relies less on trial and error and focuses instead on known genetic factors which, if attacked directly, might lead to the kind of improvement which Kalydeco provides for patients taking it. Those who may be helped by it are few — perhaps no more than four percent of cystic fibrosis sufferers can benefit. Madi is apparently one of these, a carrier of the G551D gene mutation. She knows it works because friends, relatives and ordinary people raised enough money to get her started on it. The medication transformed the girl’s life. Today, Madi and her mother Beth were told by Premier Wynne and Health Minister Matthews the drug is not yet covered by OHIP because the price is still under negotiation. Some provinces have banded together to use their collective buying power to cut drug costs. Alberta, which is leading the talks on Kalydeco, has made three proposals to the drug maker Vertex, but it has rejected each one, the Premier said. It’s not responsible for Ontario to undermine other provinces, she added. “Of course we don’t put a price on a human being’s life,” she told the Legislature. But a former health minister called her response “complete garbage.” The governing Liberals could fund the drug tomorrow if they wanted to, said Progressive Conservative Jim Wilson. The Opposition is recalling the long and depressing history of misspent money in response to the Kalydeco issue. Photos: Madi speaking after meeting Premier, Vertex location in South Boston, Madi with PC MPP Jim Wilson (Simcoe-Grey)