[When is a medicine too expensive? Citizen consultation on the societal acceptability of expensive medicines].

Abstract

Objective: To gain insight into the considerations that citizens find important for the societal acceptability of prices and expenditures on expensive medicines.

Design: Citizens' forum and representative survey.

Method: A forum of 24 citizens formulated key reimbursement considerations following case discussions. Subsequently, an online survey (n=884) assessed how broadly these considerations were supported.

Results: Citizens are more willing to accept higher prices for severe conditions, complete recovery from illness, or when medicines contribute to improved quality of life, or societal participation. At the same time, they draw clear boundaries: uncertainty about effectiveness, limited innovation, or excessively high prices undermine acceptability. Policymakers should explicitly consider these preferences in managing reimbursement decisions. Citizens believe the government must have the courage to say 'no' to excessively expensive medicines and urge manufacturers to be transparent and socially accountable regarding their pricing practices.

Conclusion: Citizens consider a wide range of factors, accepting higher prices only when benefits are evident. Their preferences align with existing criteria used by public agencies, yet highlight the need for refinement, particularly regarding transparency, pricing, and market behaviour. Structural citizen participation can further strengthen public support for difficult choices in health care.