From Rare to Neglected Diseases: A Sustainable and Inclusive Healthcare Perspective for Reframing the Orphan Drugs Issue

Abstract

This work is about how healthcare issues can be reframed from a sustainable and inclusive development perspective. Focusing on the case of orphan drugs and rare diseases, first, a country-based review of the main regulatory approaches to orphan drugs is conducted; then, the main contributions of the literature are reviewed to identify dominant views and the way the problem is more commonly framed. The main findings reveal that the dominant regulatory approaches and theoretical interpretations of the problem are mainly based on economic considerations. However, this does not seem to have led to very satisfactory results. Reflecting upon what the sustainability perspective can highlight with reference to healthcare, substantial connections between the orphan drugs issue and that of neglected diseases are highlighted. These connections suggest reframing the orphan drugs issue as a social equality and inclusiveness problem, hence the need to adopt a sustainable and inclusive development perspective. As a key sustainable development goal (SGD) to be shared by all nations, healthcare should always be approached by putting the principles of sustainable and inclusive development at the core of policy makers’ regulatory choices. Accordingly, we think that the orphan drugs issue, like that of neglected diseases, could be better faced by adopting a social equality and inclusiveness perspective.