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After 6 years, how social sciences have responded to the Zika epidemic?


Hellowa Correa and Flávia Bueno (The Global Health Network)


After 6 years of the epidemic that put Northeast Brazil in its epicenter, the Zika virus and its consequences may be away from the spotlight, but it is still a burden that needs to be addressed. From March 15th to18th, researchers from the four corners of the world who participated in one of the greatest Zika research consortiums gathered virtually (due to the current pandemic) to discuss its results and ways forward. The event marked the closing of the project, which promoted studies in a variety of areas from clinical research, to entomology and social science research.

Researchers presented the outcome of over five years of work during the Zikalliance Consortium Annual Meeting


The opening ceremony was held by Fiocruz and gathered authorities such as the Ambassador of European Union in Brazil, Ygnacio Ibañez; the French Embassy Science and Technology Attaché, Nacer Boubenna; the founder of the Association aBRAÇO à Microcefalia, Joanna Passos, and the Fiocruz President Nísia Trindade. She praised the participation of Fiocruz in ZikAlliance as a great opportunity to improve, share and exchange experiences at a global level. Trindade reinforced the crucial role of the Brazilian Public Health System (SUS, for its acronym in Portuguese) to link the increased number of microcephaly cases to the Zika virus infection. She highlighted the importance of the interdisciplinary research to such a response: “I believe that health emergencies should be seen as a social issue, as they involve all institutions of society - sanitary, scientific, economic, political, religious and cultural. That is why it is essential to have an interdisciplinary approach to respond to these emergencies.”

Ygnacio Ibañez stood for continuous international cooperation for health emergencies. “Diseases like the Zika virus infection do not respect borders, so scientists across the globe have to work together to fight them.”, he highlighted. Nacer Boubenna reminded of the long-lasting and fruitful scientific cooperation between France and Brazil. “Financing preparedness, prevention through research is the answer to rapidly apply diagnostics, treatments that will help people”, he concluded.

One of the crucial moments of the ceremony was when the founder of the Association aBRAÇO a Microcefalia, Joanna Passos, one of the mothers of babies affected by Congenital Syndrome made her testimony. She thanked the audience on behalf of the families affected by the Zika virus and described the uncertainties regarding their pregnancies, pointing out the social determinants that brought Zika into their lives. Joana did not deny the response from the Brazilian health system but emphasized it is not enough. “We women, main and often exclusive caregivers, find ourselves alone, in need to renounce our jobs, our lives, our dreams, and often ourselves. We live an intense routine of taking care of our children. We are unable of having a pap smear or taking care of our physical health, much less emotional. We were forgotten, invisible…”, reminding the essential role women to have in such a dramatic situation. (See also Fiocruz opens a virtual exhibit: “Zika: affecting lives”

Social sciences is crucial to understand and respond to the zika virus emergency

One of the main axes of ZikAlliance was the study of the social impacts the Zika epidemic imposed. Gustavo Matta, leader of Working package 7 – the group dedicated to studying the social repercussions of the Zika virus disease – explained the research main goal: to identify uncertainties of the Zika outbreak at the scientific, political and social levels in Brazil, the dynamic of arboviruses and the role of international agencies regarding the health response to the epidemic. Through interviews and document analyses, the group could verify that children got some response from the Brazilian health system, but also that they were invisible and unseen regarding social, political, and scientific aspects. He noted that when the World Health Organization (WHO) declared the end of the Zika international emergency, in November 2016, financial resources vanished. Now, the situation is even more difficult due to the Covid-19 pandemic, which made access to proper treatment even harder. “We still do not have a good serological Zika virus disease test. We dive into a lot of uncertainties”, emphasized Matta, who is also the Coordinator of the Zika Social Sciences Network.

How did social media “behaved” during the outbreak?

WP7 had different tasks to be achieved. One of them was coordinated by the researcher Elaine Rabello, who analyzed the circulation of knowledge in social media about Zika infection, practices of care, and social imaginaries from 2015 to 2017. Their aim was to understand how different communities as the media, government, population, and pregnant women apprehended information about the Zika virus.

They found that media used the “war metaphor” to allude to the crisis: putting the mosquito as the main villain of the epidemic, leaving structural issues that involve the disease aside.  The government adopted scientific institutions as the main source of information and were absent from social media platforms as Instagram and Facebook. However, families dominated social media to share images of microcephaly, scientific and political content about the disease. In this context, fake news also emerged, based on political criticism, corruption, faith, and negative views of the health system.

Health promotion in different Brazilian areas

Paulo Peiter, another task leader, talked about the results of the investigation on health promotion in the States of Bahia, Pará, Rio Grande do Norte, and Rio de Janeiro, areas highly affected by the epidemic. The study evaluated, from 2015 to 2016, some aspects such as the social consequences of the Brazilian epidemic, difficulties of diagnosis, access to healthcare for children with the Zika virus syndrome, the demand for benefits of the families, social and gender inequalities. Their goal was to understand how all these issues imposed a challenge to the Brazilian health response to the crisis.

Data provided by the Ministry of Health, interviews, and exploratory analysis were combined and their analysis exposed two main challenges:  the uncertainties of the diagnosis and the provision of proper care by the health unit. Few health units were identified to be prepared to give the necessary treatment for the children, and families were forced to take long trips to have access to it. These outcomes raised great concerns about their future and the need to have intersectoral policies to tackle the health response to the congenital syndrome.

Families and the heavy burden of the economic costs

Vera Pepe and Claudia Pereira´s task concerned the economic impacts of affected families from different perspectives. Pepe analyzed how families from the States of Ceará, Mato Grosso do Sul and Rio de Janeiro, from 2015 to 2018, dedicated their budget to health response. The prioritized focused on diagnosis, therapy, and vector control and found that the permanent political crisis prevented the continuity of innovation in terms of health response. 

They interviewed 90 families from Fortaleza and Rio de Janeiro who were beneficiaries of the Bolsa Família (Family Grant) Programme. The intention was to evaluate the out-of-pocket expenditure to support their children. According to the study, most of the families were of Afro Brazilian descent and compromised more than half of their income with costs such as transportation, food, and caregiving services due to their children´s condition. This leads them to live in a state of perennial debt up to the point where they were forced to reduce food consumption to cope with this.

Pharmaceuticals were not prepared to inform the population

Claudia Osorio conducted the analysis of pharmaceutical services regarding preparedness on the epidemic in Campo Grande, the capital city of the State of Mato Grosso do Sul, and the risk perception of two vulnerable women communities located in Sidrolândia, a smaller city in the State, and the city of Rio de Janeiro.

The survey conducted with pharmacists at the city of Campo Grande, a slightly affected region by the Zika virus epidemic, showed that these workers kept a lot of knowledge gaps and misconceptions of the Zika virus disease. Public health preparedness of pharmacists was nearly absent, as they restricted their activities to counseling and prevention.

On the risk perception study, both communities were aware of various aspects of it: causes, association with microcephaly, recognition of the mosquito as a source of infection. The surprising outcome was that they saw the disease as an external threat. These women could not see themselves experiencing it in their own lives. They learned about Zika virus disease from the media, as health workers did not represent to them a source of information. 

The investigation recommends that primary health care units should have scientific communication training. Osorio remarked that lately, it has been impossible to get current data on Zika virus disease. The last information taken was from May 2020 and around 500 people were notified to have had the disease. “After COVID-19, Zika virus disease became a silent epidemic.”, she concluded.

Disease, science, and society: Zika roadmap

During the discussion on the results of all working packages, the leader of the WP7, Gustavo Matta, pictured a panorama of the trajectory concerning the entanglements of science, health policy, and society. He stated that the Zika Social Sciences Network, created within the WP, has been building the history of the Zika outbreak in Brazil and other Latin American countries.

He highlighted the partnership with Jocelyn Raud (Inserm and University of Sorbonne), which expanded the investigation about the behavior of Zika infection in other countries of Latin America such as French Guiana, Mexico, Peru, and Suriname. The group observed that international cooperation with international agencies aligned with the Brazilian Public Health System had a significant impact on the emergency response actions, highlighting the value of such partnerships.

From 2016 to the present,  the Network has produced book chapters, 20 papers and more 5 are to be published soon, and a document of lessons learned and recommendations from the dialogue among scientists, health authorities, and social movements. Furthermore, Matta reminded the workshops in English and Portuguese and other initiatives like the Zika Affecting Lives Exhibition, launched during the event. Other scientific products can be found here.

The conclusions the WP7 reached reaffirms the fact that the impacts of the Zika virus have left long-lasting consequences. It needs continuous research funding to improve the health response, health surveillance, dignifying assistance to the families, and develop effective scientific communication.

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