Accepted paper:

'Chronic diseases' and 'secret cures': collaboration, innovation and deviance in the face of incommensurable therapeutic models in Brazil


Márcio Vilar (Goethe University Frankfurt)

Paper short abstract:

I present some modes of collaboration among people with autoimmune disorders and medical doctors, in Brazil, who do not employ established pharmaceuticals based on immune-impairment, but rather conduct therapies based on the opposite principle of immune-stimulation.

Paper long abstract:

In this paper, I present some modes of collaborative work among people with autoimmune rheumatologic diseases (AIRDs) and medical doctors who do not employ recommended conventional therapies based on immune-impairment, in Brazil. Instead, many of these AIRD-patients and medical doctors prefer to use 'non-approved' therapies, which they see as innovative ones, like those based on the opposite principle of immune-stimulation. However, by acting like this, they become marginalized and legally unprotected before Brazilian regulatory instances and medical community. Consequently, these AIRD-patients and medical doctors have to conduct their therapies outside the established networks of healthcare. In this context, how do these 'not-disciplined patients' and 'not-recommended medical doctors' seek to overcome isolation, tabooisation and invisibility? While seeking to improve their health and professional statuses, how do they exchange non-authorized knowledge, personal experiences and innovative technologies in lack of institutional support? By focusing on key aspects of collaboration and exchange which some of these patients and medical doctors practice, I highlight two implications. Firstly, when switching from an established therapy to a tabooed one, people with AIRDs and medical doctors not only seem to dodge the established medical-legal regime in Brazil, but also change and partially assume the ways they understand and conceptualize their own diseases and possibilities of treatment, as well as the whole medical institutional environment and forms of engagement. Secondly, these conceptual and practical movements seem to occur in consonance with a "paradigmatic shift" actually ongoing within different medical fields related to the emergence of "regenerative medicine".

panel IP07
Radical collaborations: a relational approach to social transformation