Dr. Eva-Maria Knoll (Institute for Social Anthropology, Austrian Academy of Sciences)
The stratified and uneven character of biomedical landscapes has been well documented, criticized and theorized by medical anthropologists, sociologists and historians of health and by public health scientists. This talk will highlight such health inequalities and health inequities that concern, and are derived from, rare inherited blood disorders.
Ethnographic case studies from the Maldive islands (where haemoglobin disorders are endemic) as well as from Austria (where these chronic rare diseases are linked to migration), document different forms of finding oneself at the margins of quality care. I will bring a theoretical engagement with health inequity into dialogue with concepts of “the remote”. As a result, I propose the notion of “therapeutic remoteness” to address, to indicate, to reflect and to criticize health inequities and unmet needs in the globalizing field of haemoglobinopathies.