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Accessing targeted therapies for cancer: self and collective advocacy alongside and beyond mainstream cancer charities
New Genetics and Society ( IF 1.8 ) Pub Date : 2021-01-17 , DOI: 10.1080/14636778.2020.1868986
Anne Kerr 1 , Choon Key Chekar 2 , Julia Swallow 3 , Emily Ross 3 , Sarah Cunningham-Burley 3
Affiliation  

As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that take place outside of the larger cancer charities. In this paper, we explore the solidarities, networks, and emotional work of the UK-based access advocates, drawing on the stories of nine advocates, which included interviews and content analyses 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 toward 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.



中文翻译:

获得针对癌症的靶向治疗:与主流癌症慈善机构并驾齐驱的自我和集体倡导

随着精准肿瘤学的发展,患者及其家人通过在大型癌症慈善机构之外进行的筹款和活动,更多地参与到获得这些治疗的努力中。在本文中,我们探讨了英国访问倡导者的团结、网络和情感工作,借鉴了九位倡导者的故事,其中包括对他们社交媒体帖子的采访和内容分析,以及他们在新闻、评论中的案例报道和筹款网站。我们将构建跨越消费主义和激进主义议程、制定个人和集体目标以及面向公共、私营和第三方部门的方向的网络的情感和知识工作视为确保支持和访问的一部分。通过这些不同的做法,

更新日期:2021-02-16
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