Monday, July 19, 2010

New system urged to treat rare-disease patients: analysis

From the Globe and Mail:
Government decisions to fund expensive treatments for rare diseases shouldn’t be made on an ad hoc basis that leaves countless patients out in the cold, says a new analysis published Monday by the Canadian Medical Association Journal.

Canada needs a new system that would allow policy makers to measure the effectiveness of treatments while connecting rare-disease patients with much-needed drugs, wrote Chaim Bell, co-author of the analysis and associate professor of medicine and health policy management at the University of Toronto.

The issue of rare diseases and access to treatment has been brewing for years. Canada has long been criticized by rare-disease patients and health experts for not having a formal policy that allows access to “orphan drugs,” or those that are used to treat rare diseases. It’s one of the few developed countries that doesn’t have one.

Without a formal policy, there is too much red tape and not enough financial incentives for drug companies to obtain approval for these products in Canada because the market is relatively small. As a result, patients may have no way of getting certain drugs or have to pay exorbitant amounts for them. ...more

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