After almost a decade of the Declaration of Public Health Emergency of National Concern in Brazil, due to changes in the pattern of occurrence of microcephaly (Brazil, 2015), many questions remain open: what are the lessons learned? What is known about the zika virus and its repercussions? How are affected children and their families being supported? What are the social, economic and political implications of the zika epidemic?
The epidemic of congenital zika virus syndrome (SCZV) occurred in a context of profound political, economic and social crisis that hit the country, resulting in offensives against social protection systems, worsening living conditions and increased inequalities. Furthermore, Brazil has become a great laboratory for researchers from around the world, bringing immense challenges to international cooperation, the sharing of data and pathogens, and also the ethical limits of scientific research during a health emergency. The lack of knowledge about the syndrome and doubts about the causal factors led to a real race against time and competition between different actors – it was urgent to produce answers, solutions and clarifications.
The affected families were intensively demanded by science, mobilizing in a political and supportive way, through meetings in research and care waiting rooms, through social networks, and fighting for rights. The children were exhaustively observed and investigated. Those who survived had access to some of the necessary care and resources. With the Declarations of Health Emergency, especially the international one, financial incentives for studies arrived quickly and met, even if insufficiently, the acute increase in health care demands of those who were being researched. Despite all efforts, the history of the zika epidemic remains marked by enormous uncertainties in the scientific, political, clinical and social fields (Kelly et al., 2020KELLY, A. H. et al. Uncertainty in times of medical emergency: Knowledge gaps and structural ignorance during the Brazilian Zika crisis. Social Science & Medicine, 2020. Doi: https://doi.org/10.1016/ j.socscimed.2020.112787.).
The Unified Health System (SUS) was fundamental in facing the epidemic. In that context of crisis, the action of federal, state and municipal governments was crucial to articulate responses, despite important differences between them. Even after thirty years of underfunding, with many issues still to be resolved and improved, it is necessary to recognize the advances and lessons learned by the SUS in the face of health emergencies. From the discovery of SCZV to the organization of response on several fronts: research and innovation; education, information and communication; reprogramming for necessary care for children and families; reorientation of political and investment priorities; intergovernmental coordination and intersectoral coordination; popular participation; strengthening health surveillance.
Much knowledge has been produced about zika and its implications since the beginning of the SCVZ epidemic, but the answers have not been sufficient. Affected children and families still struggle to access the necessary health care at the right time and place. The zika vaccine remains promising. Uncertainties remain regarding SCZV and its consequences for child development. The need and importance of dialogue, exchanges and partnerships between different actors, sectors, institutions, knowledge and practices to face such a complex situation are evident. Families and people with disabilities, organized or not in social movements, continue to fight for rights, access to policies, mobility, information, care and social protection.
The end of the International and National Emergency Declarations in 2016 and 2017, respectively, was followed by the invisibility of the impacts of ZIKV on people's lives, systems and public policies in Brazil. There was a slowdown in funding for research, even in the face of uncertainty about the possibility of a new zika epidemic globally (WHO, 2022).
Faced with all these challenges, in 2016, the Zika Social Sciences and Humanities Network was created, from the desire to produce integration between different fields of knowledge and establish relationships between researchers from different areas, managers, professionals and representatives of civil society – collaborative and engaged research! Linked to the Presidency of Fiocruz, the Zika Network was guided by two main objectives: (a) produce research on the zika virus epidemic, focusing on the contributions of human and social sciences, considering the scientific, social and political implications of the epidemics; and (b) articulate education and research practices with the knowledge and strategies produced by actors affected by the emergency. 11For more information about the Zika Social Sciences Network, visit <https://fiocruz.tghn.org/zikanetwork/>
In the Zika Network, the SCVZ was performed by different actors, through different practices, in different versions. These productions highlight the multiple nature of the syndrome, without reducing it to a single object or reality (Mol, 2008MOL, A. Política ontológica. Algumas ideias e várias perguntas. In: NUNES, J. A.; ROQUE, R. Objectos impuros: experiências em estudos sobre a ciência. Santa Maria da Feira: Edições Afrontamento, 2008.). This can be seen in the writings of this Dossier – research results that are now presented. The articles published here bring different views and perspectives on the syndrome and its realities, highlighting the care provided to children and their families, the institutionalization of this same care, the research exercises themselves, political activism, among others.
Issues that need to remain on the political and scientific agenda, especially when we consider the production of policies, institutionalizations and adequate actions to the multiplicity of the SCVZ and its realities. The challenge of facing inequalities through adequate financing of the SUS to guarantee the provision of services and organization coordinated regionally, nationally and internationally. Also, forms of organization of public systems and services that respect collectives, singularities and social needs, guided by collective territorial experiences.
For science and the SUS, a major challenge is to promote research, the development of solutions and the redistribution of resources necessary for the diagnosis, treatment and prevention of zika and SCVZ, with a view to confronting inequalities, intersectoral coordination, social participation and government coordination. It is necessary to build shared knowledge, so that the responsibility for producing and using data and evidence is the path to mutual learning for different actors – governments, researchers, professionals, public institutions and families. Performing the interdependence of knowledge in favor of health and equity is the way.
Enjoy your reading!22This thematic issue was funded by the European Union’s Horizon 2020 Research and Innovation Program under ZIKAlliance Grant Agreement no. 734548 and the Wellcome Trust Grant ref number: 218750/Z/19/Z.
- 1For more information about the Zika Social Sciences Network, visit <https://fiocruz.tghn.org/zikanetwork/>
- 2This thematic issue was funded by the European Union’s Horizon 2020 Research and Innovation Program under ZIKAlliance Grant Agreement no. 734548 and the Wellcome Trust Grant ref number: 218750/Z/19/Z.
References
- BRASIL. Portaria nº 1.813, de 11 de novembro de 2015. Declara Emergência em Saúde Pública de Importância Nacional (ESPIN) por alteração do padrão de ocorrência de microcefalias no Brasil. Brasília, 2015.
- KELLY, A. H. et al. Uncertainty in times of medical emergency: Knowledge gaps and structural ignorance during the Brazilian Zika crisis. Social Science & Medicine, 2020. Doi: https://doi.org/10.1016/ j.socscimed.2020.112787.
- MOL, A. Política ontológica. Algumas ideias e várias perguntas. In: NUNES, J. A.; ROQUE, R. Objectos impuros: experiências em estudos sobre a ciência. Santa Maria da Feira: Edições Afrontamento, 2008.
- WORLD HEALTH ORGANIZATION. Zika Epidemiology Update. fev. 2022. Disponível em: <https://www.who.int/publications/m/item/zika-epidemiology-update---february-2022>. Acesso em: 8 dez. 2023.
» https://www.who.int/publications/m/item/zika-epidemiology-update---february-2022
Publication Dates
- Publication in this collection
24 May 2024 - Date of issue
2024
History
- Corrected
24 May 2024