Universidade de Pernambuco, Ambulatório de Referência Estadual em Doença de Chagas, Casa de Chagas, Recife, PE, Brasil.
Associação Pernambucana de Portadores de Doença de Chagas, Recife, PE, Brasil.
Mem Inst Oswaldo Cruz. 2022 Jul 13;117:e220066. doi: 10.1590/0074-02760220066. eCollection 2022.
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.
已有大量文献证明，恰加斯病（Chagas disease，CD）可能对各国的公共卫生构成威胁。恰加斯病无疑是世界卫生组织（World Health Organization，WHO）列出的被忽视热带病之一，需要采取全面的医疗保健措施，超越有限的生物医学方法。自 1909 年发现该病以来已经过去了一个多世纪，受该病影响的人仍然经常被边缘化和/或忽视。本文旨在讲述他们的抗争故事，重点介绍从 1909 年到 2019 年期间的关键历史经验和成功举措。1909 年，在巴西累西腓市成立了第一个协会。截至目前，已在五大洲报告了 30 个协会。这些协会都是独立的非营利性民间社会组织，由受影响的人民主管理。这些协会的共同目标包括：提高受影响人群的知名度；让他们的声音被听到；在患者、卫生系统专业人员、公共卫生官员、政策制定者以及学术和科学界之间建立桥梁。国际恰加斯病患者协会联合会（Federation Internationale des Associations de Personnes Affectées par la Chagasie，FINDECHAGAS）于 2010 年成立，汇集了来自美洲、欧洲和西太平洋的协会，是应对恰加斯病全球化的主要举措之一。尽管面临重重障碍和困难，该联合会还是蓬勃发展、不断壮大和成熟。由于这场动员以及许多国家和国际合作伙伴的支持，2019 年 5 月，第 72 届世界卫生大会决定将每年 4 月 14 日定为世界恰加斯病日。协会运动提高了人们对该病相关挑战的认识，打破了围绕恰加斯病的沉默，改善了监测，并维持了对联合国 2030 年议程的参与。
