A Dolon Institute paper
On March 12th 2024, Richard Sear and Emilie Neez explored alternative pricing approaches for orphan medicines in a presentation at the World Evidence Pricing and Access Congress in Amsterdam.
The pricing of orphan medicines is the source of great controversy, and the question of how to determine a ‘fair and sustainable’ price for orphan medicines is one that remains hotly debated. High disparities in patient access to orphan innovation, long drawn out negotiations and growing distrust between parties on pricing would suggest that we don’t yet ‘have it right’. Accordingly, we chose to explore pricing frameworks that go beyond the typical ones that we see used in pricing and reimbursement (P&R) systems across Europe – looking for new ways to understand ‘fairness’ and for inspiration for the future.
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