Baseado no questionamento “o Mercado faz bem à Saúde?” de um trabalho inspirador (1), este artigo realiza um questionamento semelhante, centrado no associativismo e no campo das doenças raras. Partindo da pesquisa realizada no âmbito do Mestrado em Sociologia da Faculdade de Economia da Universidade de Coimbra, este texto coloca em perspectiva as formulações criadas para o campo das condições genéticas que, majoritariamente, partem de uma visão eurocentrista. Analisa-se o campo das doenças raras, identificando os papéis, as relações e as motivações dos diferentes atores, nomeadamente, associações civis, indústria farmacêutica, academia, governo, e famílias. Da análise sobressai a preponderância do mercado e da produção de medicamentos, identificando-se um modelo de governação – Modelo Utilitário de Cuidado – no qual a pessoa que sofre e as suas famílias são esvaziadas da sua subjetividade e transmutadas em medicação e agentes de mercado.
Based on the question of an inspiring work – \"Is the market good for Health?\" (1), this paper makes a similar question, centered on associativism and the field of rare diseases. Startingthe research carried out in the scope of the Master\'s Degree in Sociology of the School of Economics of the University of Coimbra, this text puts into perspective the formulations created for the field of genetic conditions that, mainly, departan Eurocentric vision. The field of rare diseases is analyzed, identifying the roles, relationships and motivations of the different actors, namely, civil associations, pharmaceutical industry, academy, government, and families. The analysis highlights the preponderance of the market and the production of medicines, identifying a governance model - Utility Model of Care - in which the person who suffers and his/her family are emptied of their subjectivity and transmuted into medication and market agents.
Does associativism is good for health? The rare disease’s case.
Resumo (abstract):
Based on the question of an inspiring work – \"Is the market good for Health?\" (1), this paper makes a similar question, centered on associativism and the field of rare diseases. Startingthe research carried out in the scope of the Master\'s Degree in Sociology of the School of Economics of the University of Coimbra, this text puts into perspective the formulations created for the field of genetic conditions that, mainly, departan Eurocentric vision. The field of rare diseases is analyzed, identifying the roles, relationships and motivations of the different actors, namely, civil associations, pharmaceutical industry, academy, government, and families. The analysis highlights the preponderance of the market and the production of medicines, identifying a governance model - Utility Model of Care - in which the person who suffers and his/her family are emptied of their subjectivity and transmuted into medication and market agents.
Barbosa, RL, Portugal, S. O associativismo faz bem à saúde? O caso das doenças raras.. Cien Saude Colet [periódico na internet] (2017/nov). [Citado em 23/12/2024].
Está disponível em: http://cienciaesaudecoletiva.com.br/artigos/o-associativismo-faz-bem-a-saude-o-caso-das-doencas-raras/16493?id=16493
