RESUMO
Tuberculosis (TB), the leading single infectious diseases killer globally, is driven by poverty. Conversely, having TB worsens impoverishment. During TB illness, lost income and out-of-pocket costs can become "catastrophic", leading patients to abandon treatment, develop drug-resistance, and die. WHO's 2015 End TB Strategy recommends eliminating catastrophic costs and providing socioeconomic support for TB-affected people. However, there is negligible evidence to guide the design and implementation of such socioeconomic support, especially in low-income, TB-endemic countries. A national, multi-sectoral workshop was held in Kathmandu, Nepal, on the 11th and 12th September 2019, to develop a shortlist of feasible, locally appropriate socioeconomic support interventions for TB-affected households in Nepal, a low-income country with significant TB burden. The workshop brought together key stakeholders in Nepal including from the Ministry of Health and Population, Department of Health Services, Provincial Health Directorate, Health Offices, National TB Program (NTP); and TB/Leprosy Officers, healthcare workers, community health volunteers, TB-affected people, and external development partners (EDP). During the workshop, participants reviewed current Nepal NTP data and strategy, discussed the preliminary results of a mixed-methods study of the socioeconomic determinants and consequences of TB in Nepal, described existing and potential socioeconomic interventions for TB-affected households in Nepal, and selected the most promising interventions for future randomized controlled trial evaluations in Nepal. This report describes the activities, outcomes, and recommendations from the workshop.
RESUMO
Este trabalho examina, em caráter exploratório, experiências de isolamento social vividas por indivíduos portadores de hanseníase, internados na ex-colônia Tavares de Macedo, em Itaboraí, onde foram mantidas da década de 1930 até os dias de hoje, para problematizar noções sobre segregação e discriminação social presentes nesse meio. Para tanto, examina sociabilidades e redes sociais de cuidados estabelecidas na vida em comum nessa "ex-colônia de leprosos", quase sempre como alternativas às condições oferecidas pelos sistemas públicos de proteção social. Faz isso com base em narrativas de alguns desses sujeitos, vistos em suas diferenças - nas interseções das relações por sexos, classes, raças/etnias, gerações, e também por religiões e graus de escolaridade. Recorre à história oral, modo de oferecer novas interpretações qualitativas de processos histórico-sociais evidenciados nessas sociabilidades e redes, nem sempre visíveis como formas singulares de proteção social da vida em comum.
This exploratory work examines the social isolation experienced by individuals with leprosy admitted to the former colony Tavares de Macedo, Itaboraí, where they were kept from the 1930s until the present day, to question notions of segregation and social discrimination present in this environment. So it analyzes sociabilities and social care networks established in the common life in this "ex-leper colony," usually as alternatives to the conditions offered by the public systems of social protection. The work is based on stories of some of the subjects, seen in their differences - at intersection of gender relations, classes, races/ethnicities, generations and also by religions and educational backgrouns. It adopts the oral history, so as to offer new qualitative interpretations of social and historical processes shown in these networks and sociability, not always visible as unique forms of social protection of life in groups.