Zika Research Positions Colombia INS as a Scientific Leader in Latin America

INS Congenital Zika Syndrome Program participants (courtesy of INS Colombia)

In late 2015, the Instituto Nacional de Salud (INS) identified the first case of Zika Virus Disease (ZVD) in Colombia, which prompted it to deploy a multi-faceted national response, including increased surveillance activities. Early data revealed that ZVD was complex and presented a wide range of shorter-term symptoms.  A comprehensive follow-up program was necessary to fully understand the long-term effects of ZVD on pregnant women and their children.

INS experts considered the program extremely successful because it allowed for unprecedented information to be gathered about the frequency of birth defects resulting from ZVD during pregnancy and the long-term effects of infections on children after birth. The work also allowed for policies and protocols to be developed, which enabled doctors in Colombia and around the world to quicky identify and better support children afflicted the Congenital Zika Syndrome (CZS). These findings led to four high-impact publications in four distinct peer-reviewed journals, including a synopsis of outcomes in the the New England Journal of Medicine*.

INS’s work with this program created an opportunity for INS personnel to acquire new capabilities and to gain experience in transferring their knowledge to local institutions and communities. A policy brief was created to explain the clinical findings and follow-up recommendations to key actors such as government officials and nursing and medical students.

The experience also showed INS the importance of maintaining close partnerships with other institutions, organizations, and academic groups that can provide expertise, resources, and novel perspectives when facing emerging health crises. Further, because of ZVD unusual disease progression from acute infection to chronic illness, the study gave INS scientists the opportunity to better understand of how to best respond to diseases with diseases with similarly unusual patterns.

Giving Families Hope and a Support System

While this project started as public health research, it evolved into something more powerful for the families affected by CZS by providing them with hope for improved treatments and connecting them with others who are going through similar experiences. 

Mothers who experience a Zika virus infection during pregnancy are more likely to experience pre-term births, miscarriages, or have children who are born with microcephaly or other congenital malformation. Children whose mother experienced a Zika infection during their pregnancy are now also known to have developmental delays and neurologic complications which prevent the child from being able to participate in typical childhood activities or complete developmental milestones on the standard timeline. 

Children who bear the marks of Zika and their families are often isolated within their communities. Through the INS Congenital Zika Syndrome Five-Year Program, these families were given the opportunity for the first time to connect with others who had similar lived experiences and, subsequently, formed a rich community. They established foundations to support affected families. They celebrate progressive milestones on social media groups.

The lives of the INS program coordinators were also deeply impacted. Due to the long duration and longitudinal design of the program, there was initially concern about retaining study participants throughout the five years. To minimize this, the program coordinators conducted frequent check-ins via telephone with study families to ensure continued engagement with the children’s health process between physical visits. This meant that relationships developed and, subsequently, study personnel became personally invested in the stories of these children and even more motivated to put their best efforts into their work.  

When asked about the field visits associated with the program, Dr. Mercado Reyes said that there were many very impactful moments with the children and their families. In particular, she recalled one moment in which, “during our third visit, when children were turning two years old, one of the girls we were evaluating arrived at the brigade walking.” She went on to say that “[t]his gave immense joy to our team and hope and a sense of perseverance to many of the mothers.”

Since the conclusion of the program in early 2020, its leaders have been advocating for the inclusion of disabilities associated with congenital ZVD in the state disability act provisions with the Colombian Congress. Additionally, they have partnered with the National Institute of Family Wellbeing to design a plan to connect and provide support to families with children with ZVD-related birth defects and developmental disabilities.

The recommendations on the care and follow-up of children with congenital ZVD produced as a result of the information obtained from this project also awarded recognition by the Social Innovation in Health Initiative, the Pan-American Health Organization, and the IANPHI General Assembly as part of the 2020 IANPHI Recognition of Success.

When reflecting on the impact of the program and work as a whole, Dr. Marcela Daza, a research pediatrician of the INS Maternal and Perinatal Research group, said that “[b]eing able to contribute with high impact publications to the understanding of a novel disease like Zika has positioned INS as a scientific leader in the region, and has uplifted many of its collaborators in seeing the extent of the impact that quality research can have on people’s lives.” 

If you are interested in learning more about this project, please reach out to Dr. Marcela Mercado Reyes, director of the INS Public Health Research Division (mmercado@ins.gov.co), and Dr. Marcela Daza Calero, research pediatrician of the INS Maternal and Perinatal Research group (mdaza@ins.gov.co).   

* Publications referenced above

1. Galang RR, Avila GA, Valencia D, Daza M, Tong VT, Bermúdez AJ, et al. Etiology of Microcephaly and Central Nervous System Defects during the Zika Epidemic in Colombia. J Pediatr. 2020 Jul;222:112-119.e3. 
2. Mercado M, Ailes EC, Daza M, Tong VT, Osorio J, Valencia D, et al. Zika virus detection in amniotic fluid and Zika-associated birth defects. Am J Obstet Gynecol. 2020 Jun;222(6):610.e1-610.e13.
3. Ospina ML, Tong VT, Gonzalez M, Valencia D, Mercado M, Gilboa SM, et al. Zika Virus Disease and Pregnancy Outcomes in Colombia. N Engl J Med. 2020 Aug 6;383(6):537–45.
4. Pacheco O, Newton SM, Daza M, Cates JE, Reales JAM, Burkel VK, et al. Neurodevelopmental findings in children 20-30 months of age with postnatal Zika infection at 1-12 months of age, Colombia, September-November 2017. Paediatr Perinat Epidemiol. 2021 Jan.