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.
The Department of Science and Technology Studies (STS), Faculty of Science, is hosting a seminar to look at some of the questions that arise when creating policies for treating rare diseases.
STS Professor Conor Douglas will present the talk, “Can We Put a Financial Value of Life? Coverage Decision-Makers and Future Challenges and Uncertainties Related to Drugs for Rare Diseases.” It will talk place Tuesday, March 26, from 12:30 to 2pm in Room 203A, (Norman’s) Bethune College, Keele Campus. All are welcome. Refreshments will be provided.
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, in particular, the pharmaceutical reimbursement plans.
What is more, there is a relative dearth of evidence, and considerable uncertainty, regarding the benefits and harms of such treatments. How then should decisions be made about who gets access to these drugs?
Can we balance the high cost and uncertain evidence of these medicines against the dearth of other treatment options available to patients suffering from rare diseases? What STS tools and concepts can help us in these matters?
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. Those explorations are subsequently used to draft recommendations for sustainable, fair, transparent and future orientated policy for DRDs.