Precarious Lives, Uncertainty and and the Politics of Hope: Engaging with Novel Therapies for Blood Disorders in India

TY - CHAP

T1 - Precarious Lives, Uncertainty and and the Politics of Hope

T2 - Engaging with Novel Therapies for Blood Disorders in India

AU - Chattoo, Sangeeta

PY - 2024/6

Y1 - 2024/6

N2 - This chapter explores the local, experiential context within which those affected by or caring for a child with thalassaemia choose a particular, so called, novel therapy, involving the use of thalidomide and hydroxyurea, which remains controversial within clinical literature and practice. Thalassemia is an inherited blood disorder that causes serious chronic anaemia. The novelty of this treatment circulates within a wider political economy of hope (Good et al.1990; Novas 2006).A lack of consensus in clinical practice on the safety and efficacy of thalidomide in treating thalassaemia brings home the significance of the hierarchy of methods through which evidence is selected to legitimise innovation and change. However, the processes of (re)constitution and regulation of clinical trials is not the focus of discussion here. Instead, the aim is to analyse the motivations and therapeutic journeys of those seeking this novel treatment despite uncertainty of outcomes and significant financial costs. Theoretically, the analysis hinges on the concepts of potentiality and precarity with uncertainty/hope as the mediating term—drawing our attention to the “ordinary, chronic and cruddy” aspects of everyday milieu within which the materiality of the disease, illness and caring are negotiated (Das 2015; Povellini 2011: 13).

AB - This chapter explores the local, experiential context within which those affected by or caring for a child with thalassaemia choose a particular, so called, novel therapy, involving the use of thalidomide and hydroxyurea, which remains controversial within clinical literature and practice. Thalassemia is an inherited blood disorder that causes serious chronic anaemia. The novelty of this treatment circulates within a wider political economy of hope (Good et al.1990; Novas 2006).A lack of consensus in clinical practice on the safety and efficacy of thalidomide in treating thalassaemia brings home the significance of the hierarchy of methods through which evidence is selected to legitimise innovation and change. However, the processes of (re)constitution and regulation of clinical trials is not the focus of discussion here. Instead, the aim is to analyse the motivations and therapeutic journeys of those seeking this novel treatment despite uncertainty of outcomes and significant financial costs. Theoretically, the analysis hinges on the concepts of potentiality and precarity with uncertainty/hope as the mediating term—drawing our attention to the “ordinary, chronic and cruddy” aspects of everyday milieu within which the materiality of the disease, illness and caring are negotiated (Das 2015; Povellini 2011: 13).

KW - uncertainty, novelty, thalassaemia, India , innovation

U2 - 10.14361/9783839467626

DO - 10.14361/9783839467626

M3 - Chapter

SN - 978-3-8376-6762-2

VL - 5

SP - 79

EP - 96

BT - Hope and Uncertainty in Health and Medicine

A2 - Hadolt, Bernhard

A2 - Stockl, Andrea

PB - transcript verlag

CY - Bielefeld

ER -