LONG-TERM EFFECTS OF ZIKA ON CHILDREN, FAMILIES AND COMMUNITIES. Photo: Save the Children. Regional Brief for Latin America and the Caribbean

Transcription

1 LONG-TERM EFFECTS OF ZIKA ON CHILDREN, FAMILIES AND COMMUNITIES Photo: Save the Children Regional Brief for Latin America and the Caribbean

2 Photo: Save the Children en Colombia As the Zika epidemic continues to spread, it is increasingly clear that there will be a growing number of babies born with Zika-related microcephaly and other neurological disabilities. Urgent attention and action is needed in both the immediate and long-term to ensure that communities, health systems and schools are able to respond to the needs of children born with disabilities, especially in the poorest communities. Save the Children is calling on Governments and donors to increase allocation of financial and human resources for quality health, education and protection services to these children and their families.

3 Photo: Save the Children en Colombia BACKGROUND The Zika epidemic first caught global attention in 2015 when Brazil started reporting an increase in cases and a high incidence of children born with microcephaly potentially linked to the outbreak. In February 2016, the World Health Organisation (WHO) announced that the cluster of neurological disorders and neonatal mal-formations reported in the Americas region constitutes a Public Health Emergency of International Concern. By April 2016, the WHO and the Centers for Disease Control and Prevention (CDC) confirmed a causal link between the Zika virus and microcephaly and Guillan Barré Syndrome. 1 Zika is transmitted to humans by the Aedes aegypti species of mosquitos, which is the same mosquito that transmits Dengue, Chikungunya and Yellow Fever. It can also be transmitted sexually from a person who has Zika. A principal concern related to the Zika virus infection is its association with microcephaly and other neu-rological disorders. Microcephaly and/ or central nervous system malformations potentially associated with Zika virus infection or suggestive of congenital infection have been rising rapidly and reported in ten countries in the region as of 18 August Cases of miscarriage and fetal death (stillbirth) have also been reported. In Latin America and the Caribbean (LAC), Save the Children is responding to Zika in six countries intensively at the community level: working with governments to mobilise communities around vector control, personal risk prevention and counselling of pregnant women and women of reproductive age. In 2016, Save the Children launched a new campaign Every Last Child with a focus on the most deprived and marginalised children. We are calling on Governments and the international community to ensure all children enjoy their right to survive, learn and be protected regardless of who they are or where they live. This includes children with disabilities, who are particularly vulnerable in the face of the Zika epidemic. 3

4 We carry out training activities in the communities to raise public awareness about prevention measures against Zika. Photo: Save the Children Honduras 4

5 WHAT SETS ZIKA APART Transmission of disease via the Aedes aegypti mosquito is nothing new in Latin America and the Caribbean. Outbreaks of dengue, Chikungunya and Yellow Fever have been affecting the region for many years. Compared to these diseases, which can cause sudden high fever, severe joint and muscle pain and rashes, Zika is fairly harmless. Only about 20% (one in five) of infected people develop noticeable symptoms. This means that transmission frequently goes unnoticed and Zika patients are rarely hospitalised. The disease is hard to detect because it is asymptomatic in many cases, but also because proper laboratory diagnosis is unavailable in the low resource settings where Zika spreads most rapidly. It is now also confirmed that the virus can be transmitted sexually, even if the person does not have any symptoms. 3 While mortality in dengue is higher than in Zika, the long term consequences of Zika are much more significant. What sets Zika apart are its potential consequences in pregnancy, as children may be born with underdeveloped brains, also known as microcephaly. While it seems that pregnant women have the same risk of contracting Zika as the rest of the population, the potential complications during pregnancy make their children especially vulnerable. Evidence suggests that the risk is higher during the first trimester of pregnancy when many women may still be unaware they are pregnant. In Nicaragua, for example, 70 cases of Zika were reported in March of In August there were 1,336, out of which 625 are pregnant women. 4 In Colombia 6,058 pregnant women were laboratory confirmed with Zika as of August out of 18,020 suspected. 5 In Brazil, 4,390 cases are confirmed so far in pregnant women out of 11,557 suspected. 6 The high proportion of confirmed Zika cases in pregnant women is likely because they are monitored more than other population groups. While the high numbers of transmission to pregnant women does not necessarily indicate that they are more susceptible to contracting Zika; the rapidly growing numbers of transmission to Zika to pregnant women is alarming. Children born with microcephaly and other neurological disorders can have a range of problems depending on severity. They are often born with smaller heads and brains. The CDC identifies the following consequences of microcephaly 7 : seizures developmental delays (such as sitting, walking) intellectual disabilities problems with movement and balance feeding problems hearing loss vision problems The CDC also notes that microcephaly is a lifelong condition and can present itself in mild to severe forms. Babies with microcephaly need constant care and medical follow-up to monitor their condition, growth and development. Early intervention and developmental care for these babies is critical to maximise their potential. This can include a range of therapies as well as medications. Before the Zika outbreak, microcephaly was quite a rare condition in the Americas. For example, in the US about 2 to 12 babies out of every 10,000 live births were born with the condition. In Brazil, an average of 156 cases of microcephaly were reported per year before the outbreak between With the current outbreak, however, microcephaly cases are spiking, with 1,835 confirmed cases of microcephaly associated with Zika in Brazil alone as of 18 August The WHO predicts that this number will rise very soon to upwards of 2,500 in Brazil. 10 The number of Zika-related microcephaly cases is rising rapidly in the entire Latin America and the Caribbean region. In May 2016, only four countries in the region reported Zika-related microcephaly cases: Brazil (1326), Colombia (7), Martinique (2) 5

6 and Panama (4). 11 As of 18 August 2016, confirmed cases are being reported in 10 countries: Brazil (1,835), Colombia (24), El Salvador (4), French Guiana (2), Honduras (1), Martinique (8), Panama (5), Paraguay (2), Puerto Rico (1) and Suriname (1). 12 One study predicts that in Puerto Rico a median of pregnant women might be infected during the Zika outbreak. Out of these, 180 infants are predicted to be born with microcephaly within a year (from mid-2016 mid-2017), compared to 12 in the absence of the Zika outbreak. 13 An additional cause for alarm is the higher incidence of other congenital abnormalities beyond microcephaly which have begun to emerge and are likely associated with intrauterine Zika virus infection. WHO reports that the range of abnormalities reported might suggest the presence of a new congenital syndrome. The full extent of the impacts of Zika are still unknown and they may show up later in a child s life. With the rapid spread of Zika, it is possible that many thousands of infants will experience a form of neurological disability. 14 Photo: Save the Children en El Salvador 6

7 Photo: Save the Children en El Salvador THE POOR ARE DISPROPORTIONATELY AFFECTED In Latin America and the Caribbean, the burden of Zika falls disproportionately on poorer populations with poor infrastructure and inadequate or inexistent basic sanitation services, including running water and garbage collection. As such, many poor urban communities create the right conditions in which the Aedes aegypti mosquito thrives. The mosquito favours tropical and sub-tropical climates and breeds in areas of stagnant water. Poor urban communities tend to be made up of informal building structures that are often half-finished, resulting in a build-up of rain water, coupled with raw sewage and garbage accumulation on streets, providing an abundant breeding ground for mosquitos. While it is true that a mosquito carrying the Zika virus can bite anyone, it is evident that due to these factors, it is more prone in poor communities. These communities also face the toughest consequences of Zika. According to World Bank estimates, about 60 percent of the poor and half of the extreme poor in the region live in urban areas. 15 There is also substantial concentration of poverty in specific urban neighbourhoods. While there is generally higher availability of services in urban areas, the poor quality of overwhelmed services can result in poor health and other outcomes. This is cause for concern given that the long-term consequences of Zika will require strong functioning health, education and protection systems. Even long before the Zika outbreak, the rate of dengue in Rio de Janeiro (which is transmitted by the same mosquito that transmits Zika), for example, was five times higher in the neighbourhood of Vila Isabel than the more affluent neighbourhood of Urca in the same city. 16 In El Salvador, the largest transmission areas of Zika are those that have little or no running water and people are forced to store water. 17 There is also evidence that poverty is linked to higher levels of Zika in general. In Brazil, for example, the majority of Zika cases have been detected in the poorer states of the northeast. 18 Out of 1,700 confirmed cases of Zika-related microcephaly in early August 2016, more than 1,400 are in the northeast region. 19 The epidemic is likely to exacerbate existing inequalities in the region since the poor are amongst the least well-prepared to confront the disease. Poorer populations are also least likely to be reached by information campaigns on Zika prevention. The future consequences of Zika could be to perpetuate the gap between the rich and the poor in Latin America and the Caribbean, a region which is one the most unequal in the world. As reported in a recent article by the World Economic Forum, in 2014 the richest 10% of people in Latin America had amassed 71% of the region s wealth. If this trend continues, according to Oxfam s calculations, in just six years time the richest 1% in the region will have accumulated more wealth than the remaining 99%. 20 7

8 Photo: Andrea Núñez Flores/Save the Children La historia de Katherine y su familia Take Katherine for example, who is pregnant with her second child and has contracted the Zika virus. Her family moved from Venezuela to Cúcuta, Colombia, after the Venezuelan border was closed. They had to leave everything behind and her and her husband now struggle to provide for themselves and their 8-year old daughter whom they suspect has Guillain-Barré syndrome. Her husband had to go far away to Bogota to try to make some money for the family. Because of wa-ter shortages, they are forced to keep water in tanks; a breeding source for mosquitos. She is scared about the potential consequences for her second child and hopes it will be born normal. 21 Cúcuta is one of the municipalities with the greatest numbers of Zika cases in Colombia, accounting for approximately 11% of all cases nationwide. 8

9 Photo: Save the Children en El Salvador ADOLESCENT GIRLS ARE ESPECIALLY VULNERABLE According to UNFPA, there are about 106 million young people between 15 and 24 years of age living in Latin America and the Caribbean; that s 20% of the total regional population, the largest ever in the region s history. The LAC region also has the second highest rate of adolescent pregnancies in the world. UNICEF reports that 26% of all births are by the age of 18, and 38% before reaching the age of Nearly 20 percent of live births in the region are by adolescent mothers. UNFPA also finds that while the total fertility rate in the region has decreased, this is not the case for adolescents. Women aged have the highest fertility rates, and adolescents aged have increased their participation in the relative distribution of fertility rates. 23 It is thus important to target this group specifically in wake of the Zika outbreak. Adolescent girls are especially vulnerable because they often have difficulty and may face discrimination in accessing contraceptive and family planning services. The absence of quality universal health coverage and in particular good maternal and newborn health services makes it especially difficult for adolescent mothers to stay healthy during pregnancy and provide the best care for their newborn. Many adolescents are not using contraceptives because of lack of education and lack of availability. This situation is exacerbated amongst lowincome groups, where access to family planning is particularly low and unwanted adolescent pregnancies are high. Given that Zika can be spread via sexual transmission, it is clear that Governments need to place an increased focus on providing adolescents with sexual and reproductive health (SRH) education. Family planning services and SRH education need to target not only pregnant women, but adolescents specifically. One of the major benefits of these services is to lower the number of unintended pregnancies, especially amongst adolescents. UNFPA estimates that if the unmet need for contraceptives were met, unintended pregnancies would drop by 65%, from 10 million to 3.5 million per year. 24 In Bolivia, for example, 40% of the population is between ages of 14-24, making it one of the youngest countries in the region. Adolescent pregnancies are increasing, particularly in the eastern departments of the country on the border with Brazil. These are also the areas with the highest levels of transmission of Zika, dengue and Chikungunya. Because of this, there is a specific Zika transmission risk factor for this group. 25 According to UNFPA, 33% of women of reproductive age in Latin America and the Caribbean who would like modern contraceptives do not have access to them. 26 Given the onset of the Zika crisis, more and more women will be seeking contraceptives to avoid unintended pregnancies and possible complications during pregnancy. This is why having contraceptives widely available is critical for women and couples to be able to access their right to family planning. Though in many instances there are national laws requiring schools to provide sexual and reproductive health education as part of the curriculum, in practice this is not being widely implemented. Often teachers lack the expertise and training necessary. Zika prevention messages need to be integrated into the school curriculum, including the risk of sexual transmission. 9

10 Photo: Save the Children en El Salvador MISINFORMATION AND LACK OF CAPACITY At a national level, Governments need to work to provide a far more systematic approach to tackling Zika. While many governments have launched country-wide communications campaigns on Zika, these efforts have often been focused exclusively on vector control, at times providing inaccurate or outdated information. Because of the rapidly changing epidemic and new findings in research, this has resulted in lots of misinformation, which again exacerbates risk. Many people do not know that Zika can be transmitted sexually, for example, and given that symptoms of Zika are only present in 1 out of 5 people, this is a major concern. Save the Children recently interviewed a pregnant adolescent girl in El Salvador, who had been reached with information on Zika prevention measures provided by community health workers. But when asked about her pregnancy, she said she hadn t heard about the specific consequences of contracting Zika during pregnancy. She is still not quite sure what the potential consequences may be and hopes that her baby will be healthy. In El Salvador, while there have been largescale information campaigns on prevention, sometimes the messages are not clear. Focus is on vector control, and not much mention of sexual transmission and/or consequences such as microcephaly. There are lots of rumours on Zika because people are not well-informed. 27 Given the potential setback for tourism for example, many countries have not wanted to highlight the Zika epidemic too much in the media, let alone microcephaly and other potential disorders. Also, since information on the link between Zika and microcephaly came out after the initial announcement of the outbreak, many Governments have not necessarily included it in their emergency response strategies. Another gap is capacity and training of health care workers. At the moment, health care workers are unable to provide differentiated or priority treatment for Zika patients because they aren t able to do a proper diagnosis. All patients with fever-like symptoms may get the same treatment, without knowing the actual diagnosis. Up until now, there are no reported cases of Zikarelated microcephaly in Bolivia for example. However, given that there are very few clinical labs nationally that can do a proper diagnosis and establish a link, it is probable that cases go unreported. 28 Also, most of the data being collected nationally gives an overview of the number of cases of Zika and microcephaly. But most countries in the region are not tracking the locality and income level of Zika patients. Having this information available would allow for more targeted analysis and approaches to be developed for the re-sponse to the outbreak to ensure that interventions are informed and effective. 10

11 Photo: Save the Children en El Salvador SOCIAL STIGMA AND LACK OF SERVICES FOR CHILDREN WITH DISABILITIES In most countries in the region, persons with disabilities are an excluded group, surrounded by an array of social stigmas. Many children with disabilities are denied equal treatments and are unable to access basic education and health care services. Many are also further discriminated against and marginalised from their families and wider communities. While there may be laws in place to protect them, these are generally not implemented and are largely underfunded. For example, in Bolivia, there is a law which provides that medical centres need to provide differentiated services for people with disabilities. However, this is not being applied. 29 While children with disabilities from wealthier households may be able to access specialised private services, this does not hold true for the poorest and most vulnerable. They also lack access to education. UNICEF estimates that only 10% of all children with disabilities globally are in school. And out of this, only about half actually complete primary school. 30 Early childhood development is crucial for all children, but especially for children with disabilities. The first three years are a critical period due to the rapid development of the brain. Because of this, early identification of developmental delays and/or disabilities is also crucial, to ensure timely access to the support and services needed. 31 Families with a child with disabilities often face a big financial strain and it can contribute to increased poverty at the household level. This is because children with disabilities such as microcephaly need full-time care, often making it impossible for mothers and/or both parents to work. These families are also forced to meet the additional costs of health care for their child. People with disabilities face social stigmas and prejudice. In the case of Zika, women have reported hiding the heads of their babies with microcephaly to avoid scrutiny and questions by the community. Because disabilities are largely a social taboo in the region, children with disabilities are more vulnerable to discrimination and social exclusion, impacting negatively on their health and education outcomes. This is why it is so important to raise awareness amongst communities and families about microcephaly, to ensure social inclusion and acceptance. Psychosocial support to mothers, families and their children is also key. Pregnant women, especially, are likely to experience lots of stress associated with not knowing whether their child will be born with a disability. Those who are told that their child has microcephaly are even more likely to develop symptoms of distress. The World Health Organisation recently issued an interim guidance for health-care providers: Psychosocial Support for pregnant women and for families with microcephaly and other neurological complications in the context of Zika virus. This guide needs to be implemented widely. In many countries, psychosocial support simply does not exist and health care workers are not trained to provide these services. 11

12 Photo: Save the Children en Colombia FUNDING REQUIREMENTS LARGELY UNMET Along with underlying inequalities, underfunded public services are a major concern for the Zika outbreak. Globally, the emergency response so far has been hugely underfunded both for WHO and its partners. According to the latest Strategic Response Framework set out by WHO/PAHO and partners, USD million are required to implement the response plan between July 2016 and December Up until July 2016, they have received USD 14.2 million in direct contributions from 11 donors. 32 That amounts to just 12% of the amount required. Out of USD 6.3 million requested, Save the Children has received just USD 694,651 as of August At national level, funding requirements are also unmet. In Bolivia for example, even if a national decree was passed making it obligatory for departments and municipalities to allocate resources to the Zika response, funding is not reaching all areas. A national economic slowdown is affecting the availability of public finances making it difficult for municipalities to meet their obligations. 33 Similarly, in Honduras, the Ministry of Health is decentralising and there aren t enough resources being dedicated to the Zika response. 34 A robust Government-led approach is essential to tackling Zika. The response must be resourced and monitored, and should include clear accountability mechanisms for different ministries including the Ministry of Health, Ministry of Education and Ministry of Finance. Funding for the Zika response must go beyond emergency funding to include a longer-term development approach and impact. The now confirmed link between Zika and microcephaly and other neurological disorders should preempt Governments and donors to consider that life-time investments for children and families affected by Zika will be essential. Steps must also be taken by relevant actors to mitigate the potentially negative socioeconomic consequences of the outbreak. A concerted focus must be placed on ensuring that children affected by Zika-related disabilities are able to enjoy their rights to survive, learn and be protected. Ongoing grassroots and community level sensitisation should also be a priority. Continued funding for communications campaigns around Zika prevention and its potential consequences, will help dispel Zika-related rumours and ensure social inclusion of children with disabilities. 12

13 RECOMMENDATIONS Given the latest evidence on the link between Zika and microcephaly and other neurological disorders, Save the Children urgently calls on international donors and Governments to: Increase allocation of financial and human resources for quality health, education and protection services to Zika-affected children and their families. Support the elaboration of operational research, for example on the gaps in the availability of inclusive services for children with disabilities. Prioritise and target adolescents and pregnant women as a particularly vulnerable group, with emphasis on access to antenatal care. Re-launch integrated information campaigns with focused messaging on the potential for sexual transmission of Zika, as well as mother to child transmission and the potential impact on the foetus. Provide integrated sexual and reproductive health services and education at primary and secondary school level, especially access to contraceptive methods. Ensure psychosocial support for families affected by the Zika virus. Adapt, strengthen and implement existing legislation on disabilities. Empower municipalities to disperse funds linked to the Zika response. Train health care workers on Zika identification and risks, sexual and reproductive health and psychosocial support. Ensure disaggregated data collection, including income level of Zika patients. 13

14 BIBLIOGRAPHIC REFERENCES 1 Zika Virus and Birth Defects Reviewing the Evidence for Causality, New England Journal of Medicine, May WHO Situation Report 18 August Zika and Sexual Transmission - CDC zika/transmission/sexual-transmission.html 4 Interview with Save the Children in Nicaragua, 19 August Zika-Epidemiological Report Colombia - PAHO, 4 August Zika-Epidemiological Report Brazil - PAHO, 4 August Facts about Microcephaly - CDC ncbddd/birthdefects/microcephaly.html 8 Microcefalia: Ministério divulga boletim epidemiológico principal/agencia-saude/20925-ministerio-divulga-boletimepidemiologico 9 WHO Situation Report Zika Virus - 18 August Zika - Washington Post - com/news/to-your-health/wp/2016/03/22/zika-in-brazilmore-than-2500-births-with-microcephaly-who-predicts/ 11 WHO Situation Report Zika Virus - 12 May WHO Situation Report Zika Virus - 18 August Estimating the Number of Pregnant Women Infected with Zika Virus and Expected Infants with Microcephaly - JAMA Pediat-rics aspx?articleid= Defining the syndrome associated with congenital Zika virus infection - WHO volumes/94/6/ /en/ 15 The Urban Poor in Latin America, Marianne Fay - The World Bank org/intlacregtopurbdev/home/ / UrbanPoorinLA.pdf 16 Zika s spread in Brazil is a crisis of inequality as much as health - The Guardian commentisfree/2016/feb/03/zika-virus-brazil-inequalitymicrocephaly-access-water-contraception 17 Interview Save the Children in El Salvador, 23 August In Brazil, are the poor more likely to contract Zika? - Al Jazeera indepth/features/2016/02/brazil-poor-contractzika html 19 Fighting Zika s Microcephaly in Brazil - CNN edition.cnn.com/2016/08/03/health/zika-brazilmicrocephaly-babies-brains-gupta/ 20 Latin America is the world s most unequal region - World Economic Forum agenda/2016/01/inequality-is-getting-worse-in-latinamerica-here-s-how-to-fix-it/ 21 This case study is provided by Save the Children, March UNICEF Fast Facts on Adolescents and Youth in Latin America and the Caribbean 23 UNFPA Proposed Response to the Zika Virus Outbreak in Latin America and the Caribbean shared/publications/2016/unfpa%20proposed%20 Response%20to%20the%20Zika%20Virus%20 Outbreak%20in%20Latin%20America%20and%20 the%20caribbean.pdf 24 UNFPA - Investing in SRH in Latin America and the Caribbean resource-pdf/383%20aiu3%20regional%20la%26c_ ENG%20FINAL% _1.pdf 25 Interview Save the Children in Bolivia, 23 August Zika outbreak: Ensuring that sexual and reproductive health services are part of the response - UNFPA 27 Interview Save the Children in El Salvador, 23 August Interview Save the Children in Bolivia, 23 August Idem. 30 UNICEF Children and Young People with Disabilities Fact Sheet, May WHO and UNICEF Early Childhood Development and Disability, Zika: Response Funding - WHO emergencies/zika-virus/response/contribution/en/ 33 Interview Save the Children in Bolivia, 23 August Interview Save the Children Honduras, 24 August

15 Children and adolescents are the main agents of change for Zika prevention and control. Photo: Save the Children en Colombia 15

16 Regional Office for Latin America and the Caribbean City of Knowledge, Building #123 Panama City, Panama