Zika: lessons on how to deal with a pandemic
Brazil is the worst country in the world in managing the covid-19 pandemic (according to a survey by the Lowy Institute, based in Sydney, which analyzed the response to the crisis in 98 countries). There are no fatalities or randomness, our scenario is the result of the choices of public managers who adopted a project to stimulate the disease, who acted against science and the public health system.
Politics who chose more than 314 thousand dead (until the end of March 2021), despite our Unified Health System, and the National Immunization Program, which are references of public health policies. Who chose to ignore the knowledge, research, work, and experience of several scientific institutions and serious professionals in their fields.
Against this misgovernment, Fundação Oswaldo Cruz (Fiocruz) has just launched the virtual exhibition Zika: Affecting Lives, which brings lessons learned about facing the consequences of the Zika virus, an epidemic that is no longer in the news but it continues to affect the lives of thousands of people — especially children and women.
“The exhibition results from research and dialogue among researchers, health professionals, managers, and families. It stimulates involvement with the problems caused by the epidemic and encourages reflections regarding the lives of those affected by the Congenital Syndrome, which must not be made invisible or forgotten.
The exhibition discloses how the responses to the Zika virus and its implications were developed. It highlights the crucial role the Brazilian science, families, and the Unified Health System (SUS, for its acronym in Portuguese) had in knowledge production, healthcare, surveillance. The Brazilian experience resulted in international recognition of our ability to face new health emergencies and global challenges”.
In Zika: Affecting Lives, we navigate through four sessions:
- Zika’s suddenness in the world and Brazil
- Uncertainties and emergencies
- Mobilization and responses
- What still needs to be done?
We learn about the beginning of the Zika virus epidemic, the increase in cases of microcephaly and the mobilization of caregivers and researchers to investigate the possible relationships between both, discovering the Congenital Zika Virus Syndrome. Congenital Syndrome can occur in children with contact with the Zika virus during pregnancy, even if their mothers have not had symptoms, and can lead to multiple disabilities, not just microcephaly. The first responses were the result of national and global articulations, from the creation of the National Network of Experts on Zika and Related Diseases — RENEZIKA, to the Microcephaly Epidemic Research Group (Merg), and the WHO visit to Brazil.
In this context, while thousands of women were afraid of becoming pregnant, many others took care of their sick babies, facing an increasingly difficult daily life. Caring for children affected by Congenital Syndrome requires effort, dedication, expenses, and absence from work.
+ In situations of public health emergencies and increased care work, the burden falls on women. This has also been the case with the covid-19 pandemic, as a research by Gender and Number shows: 50% of Brazilian women started taking care of someone in the covid-19 pandemic.
Mothers, who closely followed and collaborated with scientific research, organized themselves into associations in the fight for the rights of people with Zika Virus Congenital Syndrome. Some examples are Associação Lótus (RJ), União de Mães de Anjos (PE) and Associação aBRAÇO a Microcefalia (BA), which continue to articulate themselves to conquer public policies and guarantee access to rights for all affected families.
The Law 13965, of April 7, 2020, institutes a special pension of 1 minimum monthly wage for children with Zika Virus Congenital Syndrome born between January 1, 2015, and December 31, 2019. In that period, more than 3400 children were confirmed cases in Brazil.
Between November 2015 and November 2020, 19,492 suspected cases of Congenital Zika Syndrome were reported to the Ministry of Health. All children in contact with the Zika virus during pregnancy need long-term monitoring and care, not just those born with microcephaly. Zika is not over: the demands for guaranteeing rights and access to services are growing — not only for children but also for mothers, who in addition to work overload can experience psychological and emotional suffering, as highlighted by experts at the Exhibition.
“It is necessary to listen to the people who live this reality. Because it’s us, relatives, mothers, who can point out the failures in the system”, says Germana Soares, of the União de Mães de Anjos, in the module What still needs to be done?
The exhibition Zika: Affecting lives is trilingual (Portuguese, English and Spanish) and has accessibility tools (high contrast, increased font, Sign Language translation, and audio description). All of this is the result of the collective work of dozens of professionals, curated by Lenir Nascimento da Silva, Mariana Vercesi de Albuquerque, and Marta Fabíola Mayrink. The production is by Folguedo, which developed the expography, design, videos and accessibility consultancy. I had the opportunity to collaborate with the texts revision.
The exhibition, which marks the 120th anniversary of Fiocruz, shows that the path to deal with a public health emergency has to be followed collectively: it depends on the articulation and constant dialogue between scientists and researchers, public managers, and representatives of civil society. “Zika and other diseases can be better responded to when sciences, social movements, health, education, and public policies go hand in hand”.
May we inspire ourselves by so many lessons learned. Access and share: expozika.fiocruz.br/en
