The Moral Dilemma of Orphan Drug Prices

The Moral Dilemma of Orphan Drug Prices


Prescription drug prices are growing faster than ever, nowhere more so than in the market for orphan drugs, which are developed specifically to treat rare diseases. These medicines often cost more than $300,000 per patient per year, and a new generation of potentially curative gene therapies, like Glybera, will likely top more than $1 million for a course of treatment. With the number of approved orphan drugs and orphan drugs under development growing rapidly, the good news is that it’s never been a better time to be a patient suffering from one of the estimated 7,000 rare diseases. The chances of being able to benefit from a targeted therapy for your condition get better every year.

The bad news is that high orphan drug prices, and the growth in pharmaceutical prices in general, is putting severe strain on government healthcare budgets and even on insurance companies that offer prescription drug coverage. Public health plans often face a moral dilemma because they must decide whether saving the life of a patient suffering from a rare disease using an expensive orphan drug outweighs the likely potential health benefits that could be gained by using that same money to treat many more patients who suffer from a common disease with a cheaper drug.

The CIHR New Emerging Team for Rare Diseases, with which I am affiliated, is exploring a range of issues surrounding this health policy challenge, including the use of crowdfunding for non-profit orphan drug development and the policy preferences of Canadians for orphan drug coverage. The latest output of the team’s work is Million Dollar Meds, an interactive informational website created by Peter Klein and collaborators at UBC’s Graduate School of Journalism. It features interviews with medical and policy experts on orphan drugs as well as with patients suffering from rare diseases, and aims to present the complex debate that surrounds the issue. Check out the trailer for the Million Dollar Meds project:

Million Dollar Meds Trailer from The Global Reporting Centre on Vimeo.

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