Germana Soares is the founder and leader of a movement to guarantee access to healthcare and education by pioneering a strong community-based advocacy for children with the Zika Virus Congenital Syndrome and their families at a national state level.
The New Idea
In 2015, Brazil experienced a major Zika outbreak that led to the revelation that the virus can cause severe birth defects in babies whose mothers were infected during pregnancy. Zika began spreading in Brazil in April 2015 and the country saw more than 260,000 probable cases in 2016, according to the Health Ministry. Cases of microcephaly, an abnormally small head in babies, and other developmental deficits linked to Zika began surging in 2015 in the state of Pernambuco when more than 960 were confirmed. The parents of these babies are caught off guard and do not know what to do in order to treat and ensure the development of their children. Since this is a recent outbreak, public policies do not support nor ensure the rights of families and children in this situation.
Germana Soares gave birth in 2015 to a child with microcephaly and created UMA, Union of Mothers of Angels, which gathers, mobilizes and supports hundreds of mothers in this situation. UMA was Brazil’s first Association to address the outbreak of microcephaly cases and its main goal is to ensure the acquisition of rights for the children with the Congenital Syndrome of the Zika Virus and their families, especially in terms of access to adequate health care. Germana empowers the families to fight for their rights, raising awareness about the responsibility of the State in this public health issue. She has built a network composed of many important institutions in the state of Pernambuco, such as the Brazilian Bar Association (OAB), the public prosecution, the State Department of Health and media outlets, who support her cause.
Through each mother’s personal situation, Germana identifies the gaps in public policies and advocates for its solution. For example, Germana found that 70% of the mothers are single mothers and that 92% of them had to stop working in order to take care of their babies. They relied uniquely on the BPC, a minimum wage given to people with disabilities, and spent half of it on rent. UMA managed to change the laws of Minha Casa Minha Vida, a Brazilian public housing program, guaranteeing that these women became its priority target-audience. Besides this, UMA had other relevant achievements, such as the approval of a law that provides anticonvulsive medications free for people with disabilities; and one that sees the people with microcephaly as a priority target-audience in the Social Security program. Germana is now focused on pressuring for a law that provides a pension for victims of the Zika virus.
In over 2 years, UMA has impacted over 500 families in the state of Pernambuco. Since the organization is Brazil’s main reference in fighting for the rights of people with the Congenital Syndrome of the Zika Virus, Germana has supported the creation of analogous organizations in other states in the country, such as AFAIAL, AMAPI, APABI, AAM. For the future, Germana intends to further increase her reach in the media and to offer professionalization courses for these women so they can have a job while their kids are adequately being treated by the public health system.
In 2015 Brazil experienced a major Zika outbreak that led to the revelation that the virus can cause severe birth defects in babies whose mothers were infected during pregnancy. Cases of microcephaly, an abnormally small head in babies, and other developmental deficits linked to Zika arose in 2015 in the state of Pernambuco, northeast of Brazil, the state most affected by the epidemic. Statistics show that the Zika Virus Congenital Syndrome (ZVCS) affects mostly children and families in vulnerable positions. The 57.3% of cases are children of families that earn up to R$ 85 ($22) per month and receive Bolsa Familia aid, the federal income transfer program. The registry also shows that 70% of the mothers of these children are young people between 14 and 29 years of age, 77% are black and 89% would be eligible to receive the Continuous Benefit Program (BPC), an assistance benefit granted by the Social Security Service to the elderly and people with disabilities that earn less than a quarter of the minimum wage per month, equivalent to R$ 250 ($65).
On the most severe end of the spectrum, children with ZVCS have significant neurobiological disabilities that affect vision, hearing and swallowing, they may also be unable to walk or speak. ZVCS does not necessarily reduce a person’s lifespan, but it can cause complications that do. For instance, many children have trouble swallowing, which leads them to aspirate, which can lead to pneumonia. These children then require specific medications and healthcare services, as well as care and attention twenty-four seven. UMA mapped that 70% of the mothers of the network are single mothers and that 92% of them had to stop working in order to take care of their children. And although they have the right to access a minimum wage given to people with disabilities (BPC), the bureaucratic procedure is complicated, and the amount is barely enough to pay for housing and medical expenses.
Besides that, a big challenge is posed when it comes to including these children in the educational system – from daycare to high school and beyond. There is still no preparation and structure of the public education system to include people with disabilities and especially with the specificities of children with microcephaly. This situation discourages mothers and families from putting these children into day-care centers and schools. This is at the same time detrimental to the cognitive and social development of the children and their inclusion in society, as they keep excluded and isolated from the contact of other people besides the families and the doctors. Also, this can impose a burden on the mother who is unable to work as she is dedicated full-time to childcare.
Germana first created a state-wide movement in Pernambuco composed by mothers and families of children, with ZVCS which serves as a support network and a way to exchange information, raise awareness about their rights and strengthen their voices. Germana identifies the challenges and gaps to access healthcare, medicines and government aid from other mother's experience and her own and creates solutions collectively by partnering with different actors – private and public. To build this, Germana convinced and teamed up a group of the police force of Pernambuco and traveled through the interior of the state making partnerships with the media, mainly the radio, to unite the mothers and families of the children with ZVCS.
She implemented branches (subsidiaries) throughout the State, and each of them is responsible for organizing the community and exchanging information about legislation and procedures to guarantee access to medicines, medical procedures and government benefits to which they are entitled. The knowledge acquired by Germana and other subsidiaries is shared between the members of the Association to address the systemic problem of lack of information to ensure access to their rights. The information is not only about legislation, but also which actors and organs should be triggered, and which strategies are most effective. The BPC benefit, for instance, was registered in the law, but many families did not know how to access it. Germana then pressed the social security office in Brasilia to co-create a method to facilitate the process and make it more efficient. Germana’s Association is Brazil’s main reference in fighting for the rights of people with the Congenital Syndrome of the Zika Virus and their families, thus she influenced and supported the creation of analogous organizations in other states of the country, such as AFAIAL, AMAPI, APABI, AAM.
At the same time, collectively these women have more strength to press for change and can provide solid data for the construction of efficient public policies. Germana is leading strong community-based advocacy to guarantee better living conditions for these families. For instance, most of the families relied uniquely on the BPC, a minimum wage given to people with disabilities, and spent half of it on rent. UMA managed to change the laws of Minha Casa Minha Vida, a federal public housing program, guaranteeing that this public became its priority target-audience. Besides this, UMA had other relevant achievements, such as the approval of a law that provides anticonvulsive medications free for people with disabilities; and law enforcement that puts children with ZVCS as a priority target-audience in the Social Security program.
Germana is now also focusing on inclusive education – when she first tried to enroll her child in the daycare center she faced a series of problems: the refusal to accept her child, unprepared professionals, lack of physical structure, the teachers fear of the responsibility of taking care of a child with ZVSC. Representing UMA, Germana participated in numerous public hearings and articulated with the Court of Justice, the Brazilian Bar Association and municipal councils and obtained an official document that obliged the schools to receive those children with the appropriate infrastructure. Soon Germana began to mobilize the State Department of Education to speak on the subject and to alert them of the importance of preparing the educational system to be more inclusive to these children, thinking about the future but also in other children with other types of disabilities. On the other hand, she is also working to shift the mindsets of the families that are still hesitant about letting their children attend daycare and has been successful in doing so, following the example of other mothers, they feel more comfortable in doing the same. This is especially important for the cognitive and social development of these children as well as for creating a culture of tolerance and inclusion among children of the same age and society.
Germana was born in a poor community in Jaboatão dos Guararapes, a small city in the State of Pernambuco, surrounded by domestic violence and drug trafficking. When she was 5 years old, she lost her 3 months baby sister due to the poor conditions of the hospital and the delay in emergency care. That’s a memory that stuck with her for a long time. From an early age, she understood that life would not be easy. In her early school years, Germana suffered from prejudice from other colleagues due to the color of her skin. During sports activities and plays she would often be left excluded. But as she was growing up, she started to understand the context of that prejudice and to step up for herself. As she had an impetus to protect her colleagues in situations of injustice, she began to occupy a place of leadership and respect among schoolmates. As a teenager, she became the leader of the class, and was responsible for creating bridges of dialogue between students and teachers.
Germana always studied hard at school because her mother taught her to value her studies in order to be an independent woman in the future. She especially liked Science and History, but what she loved most were the annual competitions to collect food and clothes for donation. In the three years of high school, she led her classroom and won the competition year after year. After graduation, she started to study History at a public university and to work as a receptionist at a hotel, but soon after she became a teacher at a public elementary school. The school was located in a very poor area and was in poor condition in terms of structure and management. She then started to create new practices with the students which involved external and practical activities, arts, culture and playing. By her example, the other teachers started to replicate her ideas. None of this was easy and as she was fighting for better conditions of learning for the students, she started to realize the bigger picture and the problems of the Brazilian public educational system.
Because of a personal issue she had to leave the city and went to live in Porto de Galinhas. It was around the same time she got married and started to study Marketing, a course that she fell in love with. She decided to start over and work in sales for a big company. Germana was mostly moved by the challenges they had and by her role of encouraging and leading a team. But then an economic crisis hit Brazil and the company cut off dozens of employees, Germana included. Then her husband also lost his job. It was at this time that Germana discovered she was pregnant, despite having three clinical problems that prevented her from having a child (in the fallopian tubes and uterus).
Despite all odds, in November 2015 she gave birth to her first child. During her pregnancy, she couldn’t afford prenatal care and none of the doctors working at SUS, the public health system, wanted to take her case. When she was 12 weeks pregnant, she contracted the Zika virus, but the doctors who attended her said that there was no risk to the baby and gave the standard treatment to it, similar to what is given to people with dengue. A few days before giving birth, her husband read an article on the internet about the relationship between the Zika virus and cases of babies with microcephaly that was beginning to emerge in Brazil. Coincidentally, Germana was sharing the hospital room with a mother who already had a clear diagnosis that her baby had microcephaly. She was the first mom she got to know in the same situation as her. Days later, her baby was born with microcephaly, one of the conditions of the Congenital Syndrome of Zika Virus, and that completely changed the life of Germana, inspiring her to create the national movement that impacts the life of thousands of families and children around Brazil today.