“Many of us are rare”: the right to health and the moral economy of rare diseases activism in Brazil (1990-2020)

This article discusses the different meanings attributed to the right to health in the mobilizations to guarantee care for rare disease patients in Brazil. Since the early 1990s, rare disease patient family associations have been putting agendas to the public authorities, with demands ranging from the recognition of diseases to the development of research and diagnostic tests. The trajectory of the mobilizations to guarantee care for rare disease patients is part of a broader process of social articulation around the possibilities and limits of the Brazilian National Health System. The right to health is at the center of this process, being the Subject of varied debates and interpretations in the political, health, and legal arenas, involving arguments guided by scientific evidence, legal principles, and moral values. We argue that these variations in the directions of the right to health have involved concomitant processes of strengthening networks of rare disease actors and institutions, and of maturing the healthcare system, both converging towards the establishment of a “moral economy of rare disease patients”. This moral economy is centered on the idea that the public health relevance of these diseases cannot be identified by epidemiological evidence, but rather by individual and family experience. We used a wide scope of documentation: texts from newspapers and magazines widely circulated in the country, legislative material, publications in specialized journals, and website materials from rare disease patient organizations in Brazil

"Many of us are rare" : the right to health and the moral economy of rare diseases activism in Brazil (1990-2020)

This article discusses the different meanings attributed to the right to health in the mobilizations to guarantee care for rare disease patients in Brazil. Since the early 1990s, rare disease patient family associations have been putting agendas to the public authorities, with demands ranging from the recognition of diseases to the development of research and diagnostic tests. The trajectory of the mobilizations to guarantee care for rare disease patients is part of a broader process of social articulation around the possibilities and limits of the Brazilian National Health System. The right to health is at the center of this process, being the Subject of varied debates and interpretations in the political, health, and legal arenas, involving arguments guided by scientific evidence, legal principles, and moral values. We argue that these variations in the directions of the right to health have involved concomitant processes of strengthening networks of rare disease actors and institutions, and of maturing the health care system, both converging towards the establishment of a "moral economy of rare disease patients". This moral economy is centered on the idea that the public health relevance of these diseases cannot be identified by epidemiological evidence, but rather by individual and family experience. We used a wide scope of documentation: texts from newspapers and magazines widely circulated in the country, legislative material, publications in specialized journals, and website materials from rare disease patient organizations in Brazil.This article discusses the different meanings attributed to the right to health in the mobilizations to guarantee care for rare disease patients in Brazil. Since the early 1990s, rare disease patient family associations have been putting agendas to the public authorities, with demands ranging from the recognition of diseases to the development of research and diagnostic tests. The trajectory of the mobilizations to guarantee care for rare disease patients is part of a broader process of social articulation around the possibilities and limits of the Brazilian National Health System. The right to health is at the center of this process, being the Subject of varied debates and interpretations in the political, health, and legal arenas, involving arguments guided by scientific evidence, legal principles, and moral values. We argue that these variations in the directions of the right to health have involved concomitant processes of strengthening networks of rare disease actors and institutions, and of maturing the healthcare system, both converging towards the establishment of a "moral economy of rare disease patients". This moral economy is centered on the idea that the public health relevance of these diseases cannot be identified by epidemiological evidence, but rather by individual and family experience. We used a wide scope of documentation: texts from newspapers and magazines widely circulated in the country, legislative material, publications in specialized journals, and website materials from rare disease patient organizations in Brazil

Female cancers. A perspective from the Latin South

Texto publicado na seção "Dossier".Submitted by Marcus Vinícius Silva ([email protected]) on 2017-04-25T13:04:26Z No. of bitstreams: 1 01_dossier_eraso.pdf: 74593 bytes, checksum: 1157cddb42202bb410c2b726c9974a6c (MD5)Approved for entry into archive by Marcus Vinícius Silva ([email protected]) on 2017-04-25T13:14:30Z (GMT) No. of bitstreams: 1 01_dossier_eraso.pdf: 74593 bytes, checksum: 1157cddb42202bb410c2b726c9974a6c (MD5)Made available in DSpace on 2017-04-25T13:14:30Z (GMT). No. of bitstreams: 1 01_dossier_eraso.pdf: 74593 bytes, checksum: 1157cddb42202bb410c2b726c9974a6c (MD5) Previous issue date: 2014Oxford Brookes University. Faculty of Health and Life Sciences. Oxford, Reino Unido

Tecnologia e campos disciplinares : os citotécnicos e a implementação do teste de Papanicolaou no Brasil

A apropriação e utilização do teste de Papanicolaou como tecnologia fundamental para o controle do câncer de colo do útero no Brasil foi fruto de escolhas, acordos e embates entre determinados grupos profissionais (médicos de diferentes especialidades, farmacêuticos, biólogos, biomédicos e citotécnicos). Na primeira parte do trabalho apresentamos o processo de formulação das primeiras campanhas de rastreamento populacional com uso do teste Papanicolaou no país e, consequentemente, o surgimento da profissão de citotécnicos (profissionais dedicados a leitura das lâminas de Papanicolaou). Num segundo momento, partimos de algumas questões levantadas pela historiografia internacional no campo da história das ciências e das técnicas para discutimos as peculiaridades do processo de apropriação do teste Papanicolaou no contexto brasileiro. Priorizamos as questões relativas aos debates entre diferentes grupos profissionais envolvidos com a lógica desse exame e às relações entre os setores públicos e privados de saúde. Demonstramos que as visões distintas sobre essa tecnologia no campo de diferentes disciplinas e a relação destas com a dinâmica do mercado de trabalho moldam a trajetória da profissão de citotécnico e a forma como o teste de Papanicolaou foi (e está sendo) apropriado como tecnologia central para o rastreio do câncer de colo do útero no Brasil

Ciência e Saúde na Terra dos Bandeirantes: a trajetória do Instituto Pasteur de São Paulo no período de 1903-1916

Fundamental contribuição para a história da ciência e das instituições biomédicas no Brasil - apresenta ao leitor cientistas que marcaram época como, por exemplo, o pesquisador Antonio Carini, a quem se deve a descoberta de um parasita causador da pneumonia, denominado Pneumocystis carinii, bastante citado como um microorganismo 'oportunista' em portadores de HIV. O autor constrói seu objeto a partir de fontes praticamente inexploradas: os arquivos do Instituto Pasteur paulista. Além disso, partindo do objeto empírico, talentosamente formula uma interpretação sedutora e convincente, ao discutir questões de sua pesquisa com base em competentes coleta de dados e manipulação de conceitos

Em prol da ciência, em benefício da saúde

This paper presents the history of the Sociedade de Medicina e Cirurgia de São Paulo, SP, from 1895 to 1920 analyzing its objects of study, its institutional organization and its main actions. It tries to contribute for the understanding of the institutionalization process of medical sciences as well as widen the knowledge about the SMCSP, presenting its contributions to the public health and the development of medicine in São Paulo.Este trabalho discute a trajetória da Sociedade de Medicina e Cirurgia de São Paulo no período que se estende entre 1895 e 1920, voltando-se para a análise de seus objetos de estudos, organização institucional e principais iniciativas. Objetiva contribuir para a compreensão do processo de institucionalização das ciências biomédicas em São Paulo assim como ampliar o conhecimento sobre a SMCSP, ressaltando suas contribuições para a saúde pública e para o desenvolvimento do campo médico paulista

Avaliação de sistemas de tratamento de águas em recirculação no processamento dos frutos do cafeeiro

This study was carried out in order to evaluate treatment systems for removal of solids and organic material of the water (ARC) in way to make possible its recirculation in the coffee fruits processing. The recirculation of ARC was operated in four circuits: short circuit, without screen (CC-SP), when the ARC was recirculated without any treatment; short circuit, with screen (CC-CP), when the ARC went by a pressurized mesh screen; long circuit, without screen (CL-SP), when the ARC went by a decantation tank; and long circuit, with screen (CL-CP), when the ARC went by pressurized mesh screen and later for the decantation tank. The screen, included to ARC treatment system, showed low efficiency in removing CE, ST, SS, DBO and DQO, not resulting in significant effects in the quality of the water in recirculation. However, the decantation tank was more efficient in the removal of the analyzed variables. The circuit CL-CP presented small increment in the removal efficiencies, compared to CL-SP, not justifying the inclusion of the screen in the process. Thus the obtained data evidence the application only the decantation tank is sufficient in the ARC treatment for recirculation in the coffee fruits (Coffea arabica L.) processing.Objetivou-se, com a realização deste trabalho, avaliar a eficiência de sistemas de tratamento na remoção de sólidos e material orgânico da água utilizada no processamento de frutos do cafeeiro (ARC), de modo a possibilitar sua recirculação. O sistema de recirculação da ARC foi operado em quatro circuitos: circuito curto, sem peneira (CC-SP), no qual a ARC era recirculada sem nenhum tratamento; circuito curto, com peneira (CC-CP), no qual a ARC passava por uma peneira pressurizada de malha; circuito longo, sem peneira (CL-SP), no qual a ARC passava por um tanque de decantação; e circuito longo, com peneira (CL-CP), no qual a ARC passava pela peneira de malha e depois pelo tanque de decantação. A peneira, incluída ao sistema de tratamento da ARC, apresentou baixa eficiência na remoção de CE, ST, SS, DBO e DQO, não resultando em efeitos significativos na qualidade da água em recirculação. Entretanto, o tanque de decantação foi eficiente na remoção das variáveis analisadas. O circuito CL-CP apresentou pequeno acréscimo nas eficiências de remoção, quando comparado ao CL-SP, não justificando a inclusão da peneira de malha no processo. Com base nos resultados obtidos, verificou-se que apenas o tanque de decantação é suficiente no tratamento da ARC, para fins de sua recirculação no processamento dos frutos do cafeeiro (Coffea arabica L.)

Nuevos problemas de un nuevo sistema de salud: la creación de una política pública nacional de atención de enfermedades raras en Brasil (1990-2014)

This study discusses actors and institution movements leading to the disclosure in 2014 of Resolution 199 by the Brazilian Ministry of Health, which establishes the National Policy for the Comprehensive Care of Persons with Rare Diseases. Taking as sources the mainstream newspapers, drafts law, and secondary literature on the subject, we begin our analysis in the early 1990s when the first patient associations were created in Brazil – mainly for claiming more funds for research on genetic diseases – and arrive at the late 2010s when negotiations for a national policy are taking place in the National Congress. Resolution 199 is part of an ongoing process and the path towards its disclosure and the complications that followed have given us elements to discuss contemporary aspects of the Brazilian public health. Based on the references of the history of the present time and the social studies of science, we argue that two aspects have been fundamental to creating a national policy: framing different illnesses within the terminology “rare diseases” and the construction of a public perception about the right of health which is guaranteed by the 1988 Brazilian Constitution.En este trabajo se analizan los movimientos de actores e instituciones que llevaron a la promulgación, en 2014, de la Resolución 199 del Ministerio de Salud de Brasil, que establece la Política Nacional de Atención Integral a las Personas con Enfermedades Raras. Tomando como fuentes los principales periódicos, proyectos de ley y bibliografía secundaria sobre el tema, comenzamos nuestro análisis a principios de la década de 1990 con la creación de las primeras asociaciones de pacientes en Brasil, para reclamar fundamentalmente más fondos para la investigación de enfermedades genéticas, y llegamos a fines de la década de 2010 con las negociaciones para una política nacional. La Resolución 199 es parte de un proceso en curso, en el que el camino hacia la promulgación y las complicaciones posteriores nos dan elementos para discutir aspectos actuales de la salud pública brasileña. Sobre la base de la historia del tiempo presente y los estudios sociales de la ciencia, argumentamos que hay dos aspectos que han sido fundamentales para crear una política nacional: enmarcar diferentes enfermedades en la terminología “enfermedades raras” y la construcción de una percepción pública sobre el derecho a la salud, que se garantiza en la Constitución brasileña de 1988

Autoimmunity in Chagas' disease: immunomodulation of autoimmune and T. cruzi-specific immune responses

Faculdade de Medicina (FMD