A human rights perspective on applying a gendered lens to addressing poverty and emerging infectious diseases: a case study on Ebola in the DRC

  • Caroline Sell University of Minnesota School of Public Health; University of Minnesota Law School

Abstract

The impact of infectious diseases on populations all over the world has long been recognized as an imminent global crisis.[1]The 21st century has seen an increase in outbreaks of emerging infectious diseases (“EIDs”), which threaten the health and safety of citizens all over the globe.[2]EIDs are diseases that have “recently appeared in a population or have already existed but are rapidly increasing in incidence or geographic range,”[3]which explains the widespread fear such disease outbreaks can incite. However, despite how many times EID outbreaks have made global news headlines in contemporary history, the international community has struggled to adequately respond, leaving vulnerable populations at risk.

Many factors contribute to the disproportionate impact of EIDs on vulnerable populations, including those stemming from disparities regarding poverty and gender. Socioeconomic status influences health, to the point where “poverty breeds disease and ill health leads to poverty.”[4]Data on gender differences in infectious disease outbreaks also show that disease does not affect everyone equally.[5]Although both men and women suffer from different diseases due to biological inequalities and social differences,[6]women are particularly vulnerable due to the lack of attention and integration of women in global health policies and management strategies of EID outbreaks.

One case study that demonstrates the disparate impact on vulnerable populations during EID outbreaks is the current Ebola Virus Disease (“EVD”) outbreak in the eastern region of the Democratic Republic of the Congo (“DRC”). This outbreak began in August 2018 and has grown to become the second largest EVD outbreak on record.[7]As observed in the 2014–2016 West African EVD outbreak and other large-scale EID outbreaks such as Zika or SARS,[8]the 2018 Eastern DRC EVD outbreak has had a significant impact on women.

While research has been conducted on “diseases of poverty” and the vulnerability of women in EID outbreaks, the preference to deal with the immediate outbreak instead of addressing more systemic societal concerns forgoes the focus on the individual and their human rights. As a result, little has been done to bring in a human rights perspective to the management and response mechanisms of such outbreaks. A human rights perspective not only brings to the forefront these core issues of inequality, but also introduces supplemental and useful tools for considering how to achieve the most effective response to these emergencies. The first section of this paper provides an important background to the relationship between poverty, women, and EIDs by considering both legal and public health perspectives. The second section analyzes the role of women in global health, particularly in responses to EIDs, by examining how women have been impacted in past EID outbreaks and the current 2018 Eastern DRC EVD outbreak as a case study. Finally, this paper concludes with a discussion of how global health policymakers and healthcare professionals can address this gap by applying a gendered lens to EID outbreak management.

 

  1. Background
  2. The human right to health as a foundation for addressing inequality in poverty and gender

As human rights have developed throughout history, the issue of health has consistently been regarded as a core, fundamental human right.[9]Beginning with the United Nations (“UN”) Charter (1945), this emphasized the need for international cooperation in Chapter IX, particularly for finding solutions to health problems.[10]In 1946, the World Health Organization (“WHO”) Constitution declared that the objective of the WHO is the “attainment by all peoples of the highest possible level of health.”[11]In 1948, the Universal Declaration of Human Rights (“UDHR”) referenced this same objective for health in Article 25(1): “everyone has the right to a standard of living adequate for the health of himself and his family, including food, clothing, housing and medical care, and necessary social services . . . .”[12]In 1966, the International Covenant on Economic, Social and Cultural Rights (“ICESCR”) stated in Article 12: “The States Parties . . . recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”[13]and to achieve this, highlighted the “prevention, treatment and control of epidemic, endemic, occupational and other diseases”[14]as a vital prerequisite for success. The drafting history of this provision demonstrates that the object and purpose of this provision was to obligate States to address the prevention of disease and malnutrition, two major factors which pose obstacles for achieving health for all.[15]Additionally, the Committee on Economic, Social and Cultural Rights (“CESCR”) General Comment 14 further explained ICESCR Article 12(2)(c), stating that “The right to treatment includes the creation of a system of urgent medical care in cases of accidents, epidemics and similar health hazards, and the provision of disaster relief and humanitarian assistance in emergency situations”[16]and “[t]he control of diseases refers to States’ individual and joint efforts to . . . make available relevant technologies, using and improving epidemiological surveillance and data collection on a disaggregated basis, the implementation or enhancement of immunization programmes and other strategies of infectious disease control.”[17]With these core international instruments, basic standards of health, treatment, and particularly disease management all set the stage for a baseline of States’ obligations to respect, protect, and fulfill the right to health.

Currently, the Sustainable Development Goals (“SDG”) also highlight the right to health. In SDG 3.3, States’ target to end “the epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases . . . .”[18]is particularly relevant because neglected tropical diseases (“NTDs”) are a subset of EIDs and mainly affect the poorest populations in the world.[19]SDG 3.c to “substantially increase health financing and the recruitment, development, training and retention of the health workforce in developing countries, especially in least developed countries . . . .” and 3.d to “strengthen the capacity of all countries, in particular developing countries, for early warning, risk reduction and management of national and global health risks”[20]are both also important goals for addressing the disproportionate disease burden on States that currently lack the capacity to respond to health crises such as EIDs. These goals, voluntarily assumed by States, continue to build upon the human rights foundation of the right to health and further solidify the importance of addressing health through a human rights framework.

Just as the right to health has been established through international treaties, women’s rights have also been protected through Article 12 of the Convention on the Elimination of All Forms of Discrimination Against Women (“CEDAW”), which “obligates States Parties to eliminate discrimination against women in the field of health care and to ensure women access to appropriate services in connection with pregnancy.”[21]Like the CESCR, the CEDAW Committee further explained the importance of protections for women’s health through its General Recommendation regarding CEDAW Article 12, stating that the “duty of States parties to ensure . . . access to health care services, information and education implies an obligation to respect, protect and fulfill women's rights to health care.”[22]Additionally, another CESCR General Comment addresses women’s health in particular by articulating “State obligations as including identifying how gender roles affect health and removing legal restrictions on reproductive health, among other things.”[23]These international treaty provisions demonstrate the importance of protecting the right to health especially as it applies to women.

  1. Poverty as a determining factor of health outcomes in EIDs

Poverty is a main determining factor of EIDs in communities[24]because “poor health and poverty are intertwined in developing countries. Poverty breeds disease and ill health leads to poverty.”[25]With almost 900 million people living in extreme poverty[26]across the globe, understanding how poverty and disease are related is urgent.[27]Poverty is an important factor which contributes to more opportunities for infectious diseases to impact humans.[28]NTDs are a subset of EIDs which particularly thrive and persist under conditions of poverty.[29]One disease example is tuberculosis (“TB”), which is often described as a “disease of poverty” because it is “significantly associated with poor housing, low literacy and nutritional status, and lack of access to health services.”[30]NTDs are often called infectious diseases of poverty and are the result of the “complex interaction of biological, social, and environmental factors [because they] disproportionately affect poor and disadvantaged populations in which the poverty context reinforces risk and vulnerability.”[31]This is compounded by the fact that disease “control tools such as drugs, vaccines, and diagnostics often do not reach the populations that most need them because of social issues . . . or because they are ill adapted to the cultural, social, and economic realities in which people live.”[32]

Another connection between poverty and disease is that since EID outbreaks such as the 2014–2016 West African EVD outbreak, the 2015–2016 Zika outbreak, and the current 2018 Eastern DRC EVD outbreak can have a very significant impact on a community, they can essentially reach the level of a crisis or disaster. When disasters hit, people living in poverty are much more vulnerable.[33]On top of this, women make up approximately 70% of people living in poverty worldwide, so this indicates that overall, women are more likely to be affected by disasters in poverty-stricken areas.[34]

  1. Gender as a determining factor of health outcomes in EIDs

Another key determinant of health is gender.[35]The term “gender” refers to societal and cultural factors that are different between traditional male and female roles.[36]Studies on the relationships between sex and gender to infectious diseases have been conducted across a variety of disciplines, which has actually acted as a barrier to application of this research in outbreak settings because each discipline tends to work in isolation.[37]Thus, to fill this gap, it is important to integrate a gendered lens into outbreak response and management.

Disease does not affect men and women equally.[38]Women are a particularly vulnerable group because they “disproportionately bear the burden of poverty and disease.”[39]Thus, vulnerability is deeply gendered.[40]Not only do over 80% of women in the world live in low- or middle-income countries,[41]putting them at higher risk for more EIDs, women also live longer in general. Over a lifetime, the “social context of women's lives place exceptional burdens on the quality of life lived.” Understanding the pre-existing biological and socio-cultural conditions in which women live is an important foundation for understanding their vulnerability in crises and disasters. Risks related to health concerns from cooking fumes in the home and complications with pregnancy “overlap with developing countries and are exacerbated in the contexts of poverty combined with conflict . . . [and] such risks are further aggravated in situations of humanitarian crisis.”[42]

  1. State and international core obligations to protect health for all

Although there are international instruments protecting health, given the vulnerabilities of those living in poverty, especially women, it is not surprising that many States lack the capacity to “progressively realize and ensure that a minimum core of a properly functioning health system and infrastructure . . . exists for people to gain access to health services.”[43]While States are required to “take all appropriate measures subject to available resources,”[44]to prevent diseases, the States that experience the most NTDs “are least able to counter the existing imbalance in disease prevention research and development.”[45]The lack of capacity in many States in the Global South has been attributed to “historical vulnerability from slavery, colonialism, neocolonialism, bad governance, and neoliberal reform policies like structural adjustment.”[46]In addition to States’ obligations, there is also an “obligation of international co-operation under the right to health.”[47]If a State lacks capacity, the international community is called upon to address this problem via a ‘collective responsibility.’[48]The ICESCR addressed collective responsibility, stating that States should realize the rights in the Covenant “individually and through international assistance and co-operation, especially economic and technical.”[49]

  1. Case study on the 2018 DRC EVD outbreak

The most recent EVD outbreak began in August 2018 in the eastern region of the DRC, originally concentrated in North Kivu and Ituri provinces.[50]It has since grown to be the second largest EVD outbreak on record, the largest being the 2014–2016 West African EVD outbreak.[51]Although this is the tenth EVD outbreak to take place in the DRC, there are many factors which differentiate this outbreak from those in the past.[52]

First, past outbreaks in the DRC have not been concentrated in the eastern region of the DRC. This region has been a conflict zone for decades and violence continues today.[53]Compared to the 2014–2016 West African EVD outbreak, North Kivu province houses an even denser population than Guinea, Liberia, and Sierra Leone combined, and also shares borders with four more provinces and two other countries.[54]This subregion of the DRC has a history of insecurity and presence of well over one hundred active non-state armed groups,[55]which still remain in the region after conflicts such as the DRC independence in 1960, the bordering 1994 Rwandan genocide, and the civil war that established the regime of recent President Joseph Kabila.[56]

In the broader context, the history of the DRC has not provided a backdrop conducive to effective management of deadly EIDs. Centuries of colonialism led to decades of armed conflict, which continues today and has spread deep-rooted mistrust for the government across the country, especially in the Eastern DRC.[57]The DRC is also one of the three poorest countries in the world, despite its rich natural resources, so while colonialization may no longer be an issue, there is still an ongoing presence of exploitation.[58]These elements all contribute to the context in which the current 2018 Eastern DRC EVD outbreak is taking place, which is important to understand for the purposes of analyzing the impact of EIDs on women in poverty.

 

  1. Women play an integral role in global health and applying a gendered lens in all levels of EID responses provides better protections for women and more effective management strategies of EID outbreaks
  2. The role of women in global health
    1. Informal caregivers

The 2014–2016 West African EVD outbreak began in December 2013, but in just eight months, data reported that “55-60% of all Ebola fatalities in Guinea, Liberia, and Sierra Leone were women.”[59]Additionally, news headlines asking “Why Are So Many Women Dying from Ebola?” revealed that “women in Ebola-hit countries do not enjoy the promise of equality called for under human rights law.”[60]Since increased risk in transmitting EVD comes from basic day-to-day interactions, traditional gender roles put women in especially vulnerable positions.[61]

One role that women in many societies fill is that of the caregiver in the home. This societal expectation for women to care for the family greatly contributes to the disproportionate impact that EIDs such as EVD and HIV have on women.[62]For especially fatal diseases such as EVD, women are not only caring for more individuals, but the work is also laborious and dangerous because the disease is spread through direct contact with bodily fluids.[63]This is a particular challenge because often the intensity of the care given at home is equal to that given at a health care facility, yet not all women are formally trained health care professionals.[64]There is a gap in education and important information for women as informal caregivers, which further perpetuates the disparate impact of EIDs on women.

As caregivers and due to traditional gender roles, women are also often heavily involved in the mourning and burial rituals once their loved ones have died and they are the “ones to perform funeral rites such as washing bodies and preparing them for burial.”[65]During the 2014–2016 West African EVD outbreak, one area of Sierra Leone reported that as many as 365 deaths were connected to one funeral, and when the outbreak first began in Guinea, approximately 60% of all EVD cases were connected to traditional burial practices.[66]Since EVD is still transmissible after death and women play such a prominent role in these rituals, their gender role as caregiver and mourner puts them at a disproportionately higher risk of infection.[67]

Additionally, while women in many societies are seen as the primary caregivers in the household, when they fall ill the roles are not reversed. Instead of the men taking care of the women, other women in the community are responsible for caring for each other.[68]This is partially due to socio-cultural aspects of what are appropriate roles for men and women, and also contributes to women being more vulnerable to EIDs. Nevertheless, while the role of women as caregivers is clear, in past EVD outbreaks it is shown that “men dominated informational meetings on the disease,”[69]leaving out the key voice of women and putting them in a vulnerable place without adequate information or agency to voice their concerns during these discussions.

  1. Health workers

The healthcare workforce is also a vulnerable population during EID outbreaks due to the nature in which the disease is spread, such as EVD. Since EVD is spread through contact with bodily fluids once the patient has started to show symptoms and even after death during burial, the level of close contact that healthcare workers have to infected patients puts them higher risk of transmission. Healthcare workers are between 21 to 32 times more likely to be infected with EVD than the general adult population during an outbreak.[70]Especially in countries where the healthcare workforce is already scarce (i.e. West African countries during the 2014–2016 West African EVD outbreak), losing healthcare workers to EVD is especially challenging for effective management of the outbreak.[71]

While men often perform higher-level healthcare positions such as doctors due to gendered differences in education levels, women also play a very important role in the healthcare workforce. In almost all countries, the nursing staff is predominately female, and nurses make up a considerable amount of the healthcare workforce.[72]For example, during the 2014–2016 EVD outbreak in Sierra Leone, 70% of the healthcare workers were nurses and midwives.[73]The work conducted by nurses differs from doctors because nurses are often the healthcare workers who are in direct contact with the most patients, making them more vulnerable to contracting diseases.[74]The WHO reports that “nurses and nurse aids account for more than half of all health worker infections.”[75]As a result, since nurses are overwhelmingly female and the duties of nurses put them at higher risks of contracting diseases, “the occupational exposure of nurses can be considered a gender related exposure.”[76]

            Another important consideration related to the high infection rates of healthcare workers is that a decrease in healthcare workers also results in a decrease in availability of health care services for women.[77]This is especially significant in States that already lack adequate health infrastructure and resources. Because women already experience many health inequalities, disasters such as EID outbreaks only exacerbate them further.[78]Especially given the specific provisions under international law to protect women’s health, the lack of available health care services for women due to a decrease in healthcare workers is a serious concern.

 

  1. Global health security requires a gendered lens to adequately address the disparate impact of EIDs on women

Global health security recently emerged in the 21st century. It expands upon the definition of public health security[79]and also includes “the health consequences of human behavior, weather-related events and infectious diseases, and natural catastrophes and man-made disasters . . . .”[80]Also, “public health emergency preparedness” brings in an additional legal aspect, in both a proactive and reactive manner to best prepare and respond to such emergencies.[81]

            Because women play such an integral role in global health and are greatly and differentially impacted by EIDs, it is important to consider these issues with a gendered lens. The CESCR recognized this by recommending that States “integrate a gender perspective in their health-related policies, planning, programmes and research in order to promote better health for both women and men [because] a gender-based approach recognizes that biological and sociocultural factors play a significant role in influencing the health of men and women.”[82]Thus, women are a key voice that should be “included at all levels of planning and operations to ensure the effectiveness and appropriateness of a response.”[83]

However, though these recommendations have been made by many international actors, little has been done to integrate women into global health security responses. During the 2014–2016 West African EVD outbreak, women were “invisible” at every point of international response.[84]It is clear how women are closely intertwined in EID responses, “yet they are invisible in global health strategy, policy or practice . . . [and] only made visible through motherhood.”[85]When it comes to addressing gender during a disaster such as an EID outbreak like EVD, the tendency is to focus on “Ebola first, gender later,” as if gender concerns are an optional add-on that others can address after the outbreak has ended.[86]

            However, not only do women play important roles in global health security, but particularly in societies like the DRC’s North Kivu province, women are often leaders and heads of households. They are not only responsible for caring for their families, but their position gives them social power as well, and they care for entire communities.[87]This is especially important for EIDs like EVD because community fear and distrust of governmental and international actors in recent outbreaks have greatly complicated the EVD management response. In just seven months after the start of the 2018 Eastern DRC outbreak, studies reported “low levels of trust in government institutions and widespread belief in misinformation about EVD,”[88]which has led to “reduced adherence to EVD preventative behaviors” such as vaccinations.[89]To combat these challenges, it is vital to build up community trust by “engaging locally trusted leaders and service providers . . . to build trust with Ebola responders who are not from these communities.”[90]

            One example of how the WHO has tapped into women as a resource[91]to address this is through a partnership with Mama Mwatatu, a woman so well known in her community in North Kivu she earned the nickname “Mother Counsellor of Beni.”[92]Listeners of her radio show are mostly female, so the impact she has had on the EVD management efforts in Beni has been significant.[93]On her broadcast, she answers her listeners’ questions about EVD, emphasizing the reality of the disease. If she is unable to answer a question, she “carefully notes it down and consults with WHO experts,”[94]thus forming an invaluable partnership between the WHO and the local female community. Julienne Anoko, a social anthropologist for the WHO has also proven the power of women by collaborating with the Collectif des Associations Feminines to educate 132 women leaders about EVD and send them out to their local communities to conduct a two-week information campaign, explaining EVD vaccines, treatment, contract tracing, and the vulnerability of women and children to EVD, ultimately reaching over 600,000 people that would not have otherwise been reached due to fear and stigma.[95]These are just a few examples of ways in which women can contribute to the management of an EID outbreak. They are a key connection to the local population, and at a time when trust of authority figures is low and belief in misinformation is high, it is vital to reach all corners of affected communities.

 

Conclusion

Gender might not be the first element global health policymakers and healthcare professionals responding to an EID consider, but it should be. Applying a gendered lens to EID outbreaks reveals the disproportionate impact of EIDs on women, due to their higher rate of living in poverty and susceptibility to disease as a result of gendered roles in many societies. Women’s rights in health have been codified in many provisions in international law, but the connection between gender and EID response has not yet been developed. Due to women’s heightened susceptibility and integrated role in EID management, empowering women to do global health work in their communities and supporting them is an extremely effective way to combat not just this current EVD outbreak, but to strengthen global health security as a whole.

article type

Dates
Submitted: 2019-09-23
Accepted: 2020-02-10
Published: 2020-06-02
Section
Editor's Choice