Debora Diniz, Luciana Brito, Giselle Carino, Alessandra Hora dos Santos
{"title":"Oropouche fever in Brazil: When the time is now","authors":"Debora Diniz, Luciana Brito, Giselle Carino, Alessandra Hora dos Santos","doi":"10.1111/dewb.12463","DOIUrl":null,"url":null,"abstract":"<p>“We have the right to be informed of the latest scientific learnings in real time. Ultimately, it falls upon us to inform and care for these families, women, and children”, states Alessandra Hora dos Santos, who cosigns this editorial. Ms. Hora dos Santos oversees one of the several community-level non-governmental organizations created to safeguard the needs and rights of women and their children affected by the Zika virus in Brazil, “Família de Anjos”.</p><p>Brazil has a public health system, but the needs of children with Zika congenital syndrome are diverse and demand a strong connection between providers and facilities: from adapted transportation for mobility to daily physiotherapy, from access to home care for more dependent children to access to high-cost medicines. Família de Anjos leads political advocacy to prioritize Zika-affected children's treatment and offers some public-private partnership services. They connect around 400 women and their families in Alagoas, a small state in the poor Northeast, where Zika has hit communities dramatically since 2015.1 When Ms. Hora dos Santos emphasizes the organization's role in providing care, she highlights how the experience of health emergencies has different timings for communities and policies, for the lived experience of people and the abstraction of numbers. While an epidemic may be over in terms of health policies and surveillance guidelines, it can be a long-lasting experience for those most affected by it.2</p><p>Brazil has been the epicenter of two significant public health emergencies that have had a profound impact on women of reproductive age. The initial outbreak of the Zika virus occurred in 2015, with a subsequent decline in new cases over the past six years. However, the risk to women residing in endemic mosquito zones persists. Ms. Hora's organization has received approximately eight cases of Zika-affected children each year since the epidemic was declared to be over by the Brazilian Ministry of Health. The second health emergency was the global pandemic of the Covid-19 virus, which has resulted in elevated maternal mortality rates in the same zones as those most affected by Zika.3 Moreover, children with Zika faced interrupted treatment during the pandemic due to the lack of services, medicines, and social distancing.4</p><p>In July 2024, a new threat emerged in the conversations of the WhatsApp groups in which Ms. Hora participated with other women: Oropouche fever. The Oropouche virus has been circulating in Brazil for several decades mostly confined to the North region but has recently migrated to different parts of the country due to environmental changes. The vectors are another well-known mosquito in the communities, where the first cases of adult deaths, spontaneous abortion, stillbirth, or the birth of newborns with microcephaly –all tell-tale signs of Oropouche– have been reported.5 The symptoms of Oropouche fever are quite similar to other febrile arbovirus, including rashes, headache, and muscle pain. One of the potential risks associated with Oropouche fever is vertical transmission from a pregnant person to the fetus, which is still under investigation for certainty. As with the Zika virus, establishing a causal relationship between the events and the infection of Oropouche is challenging. The symptoms of Oropouche are nonspecific and similar to those of other currently circulating febrile illnesses in Brazil, including Dengue, Chikungunya, and Zika.</p><p>The recent change in risk assessment from the Pan American Health Organization (PAHO) from moderate to high, with moderate confidence in available information, has intensified concerns about the timing and transparency about how to communicate risks when health emergencies have the potential to disproportionately impact the population, and women in particular.6 Based on the daily news and the fragmented information from the Brazilian Ministry of Health and PAHO, we have the sense of <i>dejà vu</i> from the Zika epidemic: we do not know if we are living at the beginnings of an upcoming new disease outbreak or whether there is a false correlation between the symptoms reported by pregnant people, Oropouche laboratory findings, and incidence of fetal microcephaly. The cases are reported with generic numbers: “As of July 30, 2024, five potential cases of vertical transmission have been identified in Brazil: four cases of stillbirth and one case of spontaneous abortion in the state of Pernambuco, as well as four cases of newborns with microcephaly in the states of Acre and Pará. The investigation is ongoing”.</p><p>Significantly, the timing of the investigation is described as “ongoing”. Biomedical research requires time to prove whether a new health incident is caused by an old disease, such as the Oropouche virus in the Americas. However, the timing health policies are contingent upon the outcome of the ongoing investigations. For women of reproductive age living in areas where the Oropouche virus is now circulating through vector mosquitoes, there is a sense of urgency in the present: it may have long-lasting implications for their lives, similar to those observed in the Zika epidemic. The question is how to balance the need for extended time to research and the need for precautionary measures to anticipate protection in case the investigation finds a new causality. From the perspective of Ms. Hora, the response is straightforward: opening a permanent channel of communication and preventive actions as part of a comprehensive preparedness. It demands more than releasing surveillance bulletins; it is about finding new formats of communication that explain the uncertainties about the vertical transmission hypothesis while putting women and other persons of reproductive age at the center of health care decisions.</p><p>In the context of public health emergencies, the initial cases are referred to as “patient zeros.” They represent a time in an outbreak when the risk event was not even considered as a reality –an anterior past of a history that women in Oropouche zones want to know in more detail to understand how vulnerable they are now. It will be at a future moment, when the outbreak is a real concern, when the names and biographies of the patient zeros become public and their stories frame the understanding of the new phenomena. The patient zero for vertical transmission will have a woman's face, as happened with Zika. Women need to know in real time the uncertainties of science, and, after two health emergencies hitting the same population, policymakers should have been more prepared to translate the fragmented pieces of knowledge into general communication. In ethical terms, there is a right to be informed with the best available science as there is a duty of accountability to these communities –the argument that ordinary people do not understand uncertainties from science is not convincing anymore.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":null,"pages":null},"PeriodicalIF":0.9000,"publicationDate":"2024-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dewb.12463","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Developing World Bioethics","FirstCategoryId":"98","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/dewb.12463","RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"ETHICS","Score":null,"Total":0}
引用次数: 0
Abstract
“We have the right to be informed of the latest scientific learnings in real time. Ultimately, it falls upon us to inform and care for these families, women, and children”, states Alessandra Hora dos Santos, who cosigns this editorial. Ms. Hora dos Santos oversees one of the several community-level non-governmental organizations created to safeguard the needs and rights of women and their children affected by the Zika virus in Brazil, “Família de Anjos”.
Brazil has a public health system, but the needs of children with Zika congenital syndrome are diverse and demand a strong connection between providers and facilities: from adapted transportation for mobility to daily physiotherapy, from access to home care for more dependent children to access to high-cost medicines. Família de Anjos leads political advocacy to prioritize Zika-affected children's treatment and offers some public-private partnership services. They connect around 400 women and their families in Alagoas, a small state in the poor Northeast, where Zika has hit communities dramatically since 2015.1 When Ms. Hora dos Santos emphasizes the organization's role in providing care, she highlights how the experience of health emergencies has different timings for communities and policies, for the lived experience of people and the abstraction of numbers. While an epidemic may be over in terms of health policies and surveillance guidelines, it can be a long-lasting experience for those most affected by it.2
Brazil has been the epicenter of two significant public health emergencies that have had a profound impact on women of reproductive age. The initial outbreak of the Zika virus occurred in 2015, with a subsequent decline in new cases over the past six years. However, the risk to women residing in endemic mosquito zones persists. Ms. Hora's organization has received approximately eight cases of Zika-affected children each year since the epidemic was declared to be over by the Brazilian Ministry of Health. The second health emergency was the global pandemic of the Covid-19 virus, which has resulted in elevated maternal mortality rates in the same zones as those most affected by Zika.3 Moreover, children with Zika faced interrupted treatment during the pandemic due to the lack of services, medicines, and social distancing.4
In July 2024, a new threat emerged in the conversations of the WhatsApp groups in which Ms. Hora participated with other women: Oropouche fever. The Oropouche virus has been circulating in Brazil for several decades mostly confined to the North region but has recently migrated to different parts of the country due to environmental changes. The vectors are another well-known mosquito in the communities, where the first cases of adult deaths, spontaneous abortion, stillbirth, or the birth of newborns with microcephaly –all tell-tale signs of Oropouche– have been reported.5 The symptoms of Oropouche fever are quite similar to other febrile arbovirus, including rashes, headache, and muscle pain. One of the potential risks associated with Oropouche fever is vertical transmission from a pregnant person to the fetus, which is still under investigation for certainty. As with the Zika virus, establishing a causal relationship between the events and the infection of Oropouche is challenging. The symptoms of Oropouche are nonspecific and similar to those of other currently circulating febrile illnesses in Brazil, including Dengue, Chikungunya, and Zika.
The recent change in risk assessment from the Pan American Health Organization (PAHO) from moderate to high, with moderate confidence in available information, has intensified concerns about the timing and transparency about how to communicate risks when health emergencies have the potential to disproportionately impact the population, and women in particular.6 Based on the daily news and the fragmented information from the Brazilian Ministry of Health and PAHO, we have the sense of dejà vu from the Zika epidemic: we do not know if we are living at the beginnings of an upcoming new disease outbreak or whether there is a false correlation between the symptoms reported by pregnant people, Oropouche laboratory findings, and incidence of fetal microcephaly. The cases are reported with generic numbers: “As of July 30, 2024, five potential cases of vertical transmission have been identified in Brazil: four cases of stillbirth and one case of spontaneous abortion in the state of Pernambuco, as well as four cases of newborns with microcephaly in the states of Acre and Pará. The investigation is ongoing”.
Significantly, the timing of the investigation is described as “ongoing”. Biomedical research requires time to prove whether a new health incident is caused by an old disease, such as the Oropouche virus in the Americas. However, the timing health policies are contingent upon the outcome of the ongoing investigations. For women of reproductive age living in areas where the Oropouche virus is now circulating through vector mosquitoes, there is a sense of urgency in the present: it may have long-lasting implications for their lives, similar to those observed in the Zika epidemic. The question is how to balance the need for extended time to research and the need for precautionary measures to anticipate protection in case the investigation finds a new causality. From the perspective of Ms. Hora, the response is straightforward: opening a permanent channel of communication and preventive actions as part of a comprehensive preparedness. It demands more than releasing surveillance bulletins; it is about finding new formats of communication that explain the uncertainties about the vertical transmission hypothesis while putting women and other persons of reproductive age at the center of health care decisions.
In the context of public health emergencies, the initial cases are referred to as “patient zeros.” They represent a time in an outbreak when the risk event was not even considered as a reality –an anterior past of a history that women in Oropouche zones want to know in more detail to understand how vulnerable they are now. It will be at a future moment, when the outbreak is a real concern, when the names and biographies of the patient zeros become public and their stories frame the understanding of the new phenomena. The patient zero for vertical transmission will have a woman's face, as happened with Zika. Women need to know in real time the uncertainties of science, and, after two health emergencies hitting the same population, policymakers should have been more prepared to translate the fragmented pieces of knowledge into general communication. In ethical terms, there is a right to be informed with the best available science as there is a duty of accountability to these communities –the argument that ordinary people do not understand uncertainties from science is not convincing anymore.
期刊介绍:
Developing World Bioethics provides long needed case studies, teaching materials, news in brief, and legal backgrounds to bioethics scholars and students in developing and developed countries alike. This companion journal to Bioethics also features high-quality peer reviewed original articles. It is edited by well-known bioethicists who are working in developing countries, yet it will also be open to contributions and commentary from developed countries'' authors.
Developing World Bioethics is the only journal in the field dedicated exclusively to developing countries'' bioethics issues. The journal is an essential resource for all those concerned about bioethical issues in the developing world. Members of Ethics Committees in developing countries will highly value a special section dedicated to their work.