A Discrete Choice Experiment Investigating Preferences for Funding Drugs Used to Treat Orphan Diseases

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Policy debate about funding criteria for drugs used to treat rare, orphan diseases is gaining prominence. This study presents evidence from a discrete choice experiment investigating the preferences of the public regarding public funding for drugs used to treat rare diseases and common diseases using a convenient sample of university students. We find that: other things equal, the respondents do not prefer to have the government spend more for drugs used to treat rare diseases; that respondents are not willing to pay more per life year gained for a rare disease than a common disease; and that the public weighs relevant attributes of the coverage decisions (e.g., costs, disease severity, treatment effectiveness) similarly for both rare and common diseases. The results confirm the importance of severity and treatment effectiveness in preferences for public funding. Though the first study of its kind, the results send a cautionary message regarding the special treatment of orphan drugs in coverage decision making.