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Double bad luck: Should rare diseases get special treatment?

Adam Hutchings
January 2022

A thought-provoking and well-written article by Monica Magalhaes (Should rare diseases get special treatment?) proposes that prevalence should be irrelevant to policy for rare disease treatments, and any incentives for development of these medicines should be based instead on severity. This commentary reflects on Magalhaes’ arguments and suggests why they may not fully reflect reality, based on current practice and evidence. It then brings forward the counter perspective that it is essential to consider prevalence, as focusing on severity alone creates the exact situation of neglect for effective rare disease treatment development that we are seeking to avoid. Journal of Medical Ethics 48(2) 99–100 (2022).