| Journal: | Memorias do Instituto Oswaldo Cruz |
| Database: | PERIÓDICA |
| System number: | 000452434 |
| ISSN: | 0074-0276 |
| Authors: | Oliveira-Junir, Wilson Alves de1 Gómez i Prat, Jordi2 Albajar Viñas, Pedro2 Carrazzone, Cristina1 Kropf, Simone Petraglia5 Dehousse, Aurore4 Camargo, Ana Maria de Arruda2 Anselmi, Mariella2 Barba, Maria Cristina Parada2 Guiu, Isabel Claveria3 Barros, Maria das Neves Dantas Silveira1 Cavalvanti, Maria da Glória Melo1 Correia, Cassandra Barros1 Martins, Silvia Marinho1 |
| Institutions: | 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 |
| Year: | 2022 |
| Volumen: | 117 |
| Country: | Brasil |
| Language: | Inglés |
| Document type: | Artículo |
| Approach: | Analítico, descriptivo |
| English abstract | 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 |
| Keyword: | 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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