Moran, Gillian and Mountford, Nicola (2021) Please don’t put a price on our lives”: Social media and the contestation of value in Ireland’s pricing of orphan drugs. In: Healthcare Activism: Markets, Morals, and the Collective Good,. Oxford University Press, U.K.. ISBN 9780191897603

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Abstract

This chapter combines two streams of scholarship—social media marketing and influence, and market organization—to examine two case studies of patient activism in the context of Irish drug pricing. The first is the provision of Orkambi, a drug for cystic fibrosis, which was approved in Ireland after eleven months of state/pharma negotiations held in a context of public debate and social media campaigning by people living with cystic fibrosis, their loved ones, and their advocates. The second case concerns the provision of Spinraza, a drug for patients with spinal muscular atrophy. In each case the chapter identifies key actors and tracks their social media activity with a view to identifying key turning points in the debate, relational links, and shifts. Ultimately the goal is to understand how activist organizations and individuals organize and reorganize the pharmaceutical market and the collective good through their actions and interactions on social media.

Item Type:	Book Section
Keywords:	pharmaceutical pricing; pricing; patient organizations; social media activism; healthcare activism; orphan drugs; Orkambi; Spinraza; Ireland;
Academic Unit:	Faculty of Social Sciences > School of Business
Item ID:	18066
Depositing User:	Nicola Mountford
Date Deposited:	25 Jan 2024 10:44
Journal or Publication Title:	Healthcare Activism: Markets, Morals, and the Collective Good,
Publisher:	Oxford University Press
Refereed:	Yes
URI:	Publisher
Use Licence:	This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here

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