How people affected by Chagas disease have struggled with their negligence: history, associative movement and World Chagas Disease Day



Título del documento: How people affected by Chagas disease have struggled with their negligence: history, associative movement and World Chagas Disease Day
Revista: Memorias do Instituto Oswaldo Cruz
Base de datos: PERIÓDICA
Número de sistema: 000452434
ISSN: 0074-0276
Autors: 1
2
2
1
5
4
2
2
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3
1
1
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1
Institucions: 1Associacao Pernambucana de Portadores de Doenca de Chagas, Recife, Pernambuco. Brasil
2International Federation of Associations of People Affected by Chagas FINDECHAGAS, Advisory Board, Campinas, Sao Paulo. Brasil
3Instituto Catalán de la Salud Equipo de Salud Pública y Comunitaria, Unidad de Salud Internacional Vall d’Hebron-Drassanes, Barcelona. España
4World Health Organization, Department of Control of Neglected Tropical Diseases, Ginebra. Suiza
5Fundacao Oswaldo Cruz, Casa de Oswaldo Cruz, Rio de Janeiro. Brasil
Any:
Volum: 117
País: Brasil
Idioma: Inglés
Tipo de documento: Artículo
Enfoque: Analítico, descriptivo
Resumen en inglés It is well documented that Chagas disease (CD) can pose a public health problem to countries. As one of the World Health Organization Neglected Tropical Diseases undoubtedly calls for comprehensive healthcare, transcending a restricted biomedical approach. After more than a century since their discovery, in 1909, people affected by CD are still frequently marginalised and/or neglected. The aim of this article is to tell the story of their activism, highlighting key historical experiences and successful initiatives, from 1909 to 2019. The first association was created in 1987, in the city of Recife, Brazil. So far, thirty associations have been reported on five continents. They were created as independent non-profit civil society organisations and run democratically by affected people. Among the common associations’ objectives, we notably find: increase the visibility of the affected; make their voice heard; build bridges between patients, health system professionals, public health officials, policy makers and the academic and scientific communities. The International Federation of Associations of People Affected by CD - FINDECHAGAS, created in 2010 with the input of the Americas, Europe and the Western Pacific, counts as one of the main responses to the globalisation of CD. Despite all the obstacles and difficulties encountered, the Federation has thrived, grown, and matured. As a result of this mobilisation along with the support of many national and international partners, in May 2019 the 72nd World Health Assembly decided to establish World Chagas Disease Day, on 14 April. The associative movement has increased the understanding of the challenges related to the disease and breaks the silence around Chagas disease, improving surveillance, and sustaining engagement towards the United Nations 2030 agenda
Disciplines Medicina
Paraules clau: Salud pública,
Historia y filosofía de la medicina,
Enfermedades olvidadas,
Enfermedad de Chagas,
Atención a la salud
Keyword: Public health,
History and philosophy of medicine,
Neglected diseases,
Chagas disease,
Health care
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