Journal of inherited metabolic diseaseHumansRare DiseasesDecision MakingOrphan Drug ProductionDelivery of Health Care
From Justification to Legitimacy: A Deliberative Framework for Decisions Around Expensive Drugs for Rare Diseases.
Bashir Jiwani
Published: 202610.1002/jimd.70126
Abstract
Decisions about expensive drugs for rare diseases (EDRDs) raise complex ethical challenges beyond the allocation of limited healthcare resources. This paper examines the ethical dimensions of EDRD decision-making, arguing that the framing of such dec…
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