Abstract

In this issue, Sirrs and colleagues (2023) provide a very informative picture of the value and cost of policies to promote orphan drug development. They examine the influence of these policies on pharmaceutical research and development, the proliferation of rare diseases, the prohibitive costs and the loopholes of these policies. One section of the paper identifies the ethical issues and proposes a response to the challenge of integrating the utility perspectives of pharmacoeconomic analyses with those of treatment access claims formulated from a deontological perspective. Their proposal is essentially that of procedural ethics. I enter the ethical debate obliquely by looking at the rule of rescue phenomenon observed by Albert R. Jonsen (Jonsen 1986). I explore the twists and turns of the discussion on this subject and assume the perspective of authors who give significant weight to the symbolic value of respecting it. In conclusion, I take up the symbolic question by arguing that the challenge of preserving the aura of legitimacy that must surround political decisions sometimes requires distancing oneself from sound recommendations, which, even if they are the result of an ideal procedure, will nevertheless be perceived as unjust and insensitive.