Accessing targeted therapies for cancer: self and collective advocacy alongside and beyond mainstream cancer charities

Anne Kerr, Choon Key Chekar, Julia Swallow, Emily Ross, Sarah Cunningham-burley

Research output: Contribution to journalArticlepeer-review

Abstract

As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that takes place outside of the larger cancer charities. In this paper we explore the solidarities, networks and emotional labour of UK-based access advocates, drawing on the stories of 9 advocates, which included interviews and content analysis of their social media posts and coverage of their case in news, commentary and fundraising websites. We consider the emotional and knowledge work of building networks that spanned consumerist and activist agendas, forged individual and collective goals and orientations towards the public, private and third sectors as part of securing support and access. Through these various practices, the actors we have studied cultivated personal advantage and solidarities with other patients and advocates, and in so doing engaged in self and collective advocacy alongside and beyond mainstream cancer charities.
Original languageEnglish
Pages (from-to)112-131
JournalNew Genetics and Society
Volume40
Issue number1
DOIs
Publication statusPublished - 17 Jan 2021

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