Can We Put a Financial Value on Life? Coverage Decision-Makers and Future Challenges and Uncertainties Related to Drugs for Rare Diseases

As our understanding of diseases and how to treat them evolves, so too must our decision-making procedures for providing treatments for those living with illness. Today, one area of policy that lags behind is that for treatments of rare diseases. Often the cost of drugs for rare disease (DRDs) are very high, resulting in a significant challenge for the health-care system and in particular the pharmaceutical reimbursement plans. This paper presentation reports on a scenario study geared towards helping drug coverage decision-makers in various Canadian provinces explore uncertain futures in this area.