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.
ABSTRACT
Resumo A discussão a respeito dos avanços dos cuidados em saúde passa pela questão da participação dos pacientes/usuários nas decisões a respeito de seu tratamento, dos seus direitos e de sua influência nas políticas públicas de saúde. O objetivo do presente artigo é fazer um breve histórico sobre a participação dos pacientes/usuários no sistema de saúde francês e apontar as principais conquistas e dificuldades presentes na atualidade. O artigo utiliza dados de arquivos oficiais, documentos produzidos por associações de pacientes e artigos de revistas especializadas. Na França, a participação dos pacientes faz parte de um cenário complexo que pode ser reconhecido no termo "Democracia Sanitária", que surge a partir da aproximação do campo da saúde e da política, propondo o questionamento das relações de poder estruturadas entre os atores e da possibilidade de um debate entre ciência e democracia. A epidemia da aids na década de 80 acompanhada de vários escândalos sanitários propiciou uma ruptura no modelo tradicional de estruturação das relações no campo da saúde produzindo uma mudança do status do paciente, de seu papel e de sua própria identidade através do fortalecimento do movimento associativo.
Abstract The discussion about advancements in healthcare involves the question of patient/user participation in decisions about their treatment, rights and influence on public health policies. This article thus outlines a brief history about the participation of patients/users of the French health system and to point out the main achievements and difficulties today. Three main sources were used: official archives, documents produced by patient associations, and journal articles. In France, patient participation is part of a complex scenario that can be seen in the term "Sanitary Democracy", which brought together health and politics, so that the structured power relations between patients and health professionals could be questioned and a debate between science and democracy could take place. The AIDS epidemic in the 1980s, followed by various health scandals, led to a break with the traditional model of structuring relationships in the health field, leading to change in the patient's status, role and identity through the strengthening of the associative movement.