The mutability of the ‘Rare’: the politics of common inherited disorders in India today
Sangeeta Chattoo (University of York, UK)
Panel: Rare diseases in health policies and public health
Abstract: A theoretical focus on mutability and multiplicity of how rare diseases are framed, as well as the politics of numbering or singularity within a particular health-care system are not new. Gibbons and Aureliano (2018), among others, have highlighted potential tensions between the rare as ‘common diseases’ on one hand and prevention of the rare and disability rights discourses on the other. The workshop theme highlights the adjective ‘new’ as underpinning the terrain of rare diseases (RD). It appears as a potential frontier of promissory science and translational medicine, at an intersection of democratisation and decentring of knowledge accompanied by new forms of sociality and activism that shape public health policy. Taking the example of the politics of inclusion and exclusion of sickle cell and thalassaemia, two common inherited blood disorders in India, this paper will look at how the old is reimagined within this domain of the rare, and the forms of health activism that seem to influence emerging public health policy related to RD there. The paper draws on fieldwork carried out between 2016-2019 for a larger ESRC grant (ES/156551), serendipitously placing these diagnostic categories at the borderland of common, neglected, tropical diseases and the Rare.