Women’s Rights Crucial in Ebola Outbreak in Uganda

Written by Dr. Tom J. Obengo
 
In September and October 2022, the East Africa region experienced an Ebola outbreak with ethical concerns in need of urgent attention. The Ugandan government considers the announcement of the outbreak to be sensitive due to its likely negative impact on tourism. The Democratic Republic of Congo (DRC), which neighbours Uganda to the west, also battled an outbreak of Ebola in the same period, although the DRC government declared an end to the outbreak in September 2022. Uganda has had at least three previous episodes of Ebola, the most deadly of which killed hundreds of people in 2000, including its lead treatment specialist, Dr Matthew Lukwiya
 
Whether in Uganda or in the broader East African region, the re-emergence of Ebola calls our attention to ethical issues in relation to the rights of women during such an outbreak. We have a justification for specifically focusing on the rights of women given that the care of patients at home, both rural and urban, heavily falls into the hands of women in this part of the world; open-air markets in Africa are predominantly populated by women; and women tend to bear the burden of negative health and economic effects of epidemics. It has been observed that health emergencies do immediate and long-term harm to women, disproportionately. Also, women are essential to responding to health emergencies. A study in the DRC in 2019 had identified women as primary caregivers in this context; and as providers, often in occupations that increase vulnerability to Ebola. It was further observed that, because women’s caregiving is largely unpaid, women face a double burden of work as they seek other livelihood strategies that sometimes increase vulnerability to Ebola. It is critical that the interests of women are appropriately recognised and addresses in the outbreak.
 
In this blog, I identify five concerns that need addressing so that the health, safety, and reproductive health rights of women are taken care of. These are not just as ends by themselves, but as means through which the greater health and safety needs of the society are also taken care of. From early media reports, the first concern regards relaxed screening of travellers across the border, whether leaving or entering Uganda. Although Uganda has had an admirable history in controlling previous Ebola outbreaks, and Kenya has maintained a strong surveillance system, relaxed border screening is a condition that should not be tolerated by both countries. Cross-border infection control relates to the rights of women because, as noted above, women are primary seekers of livelihood in various contexts, including cross-border trade. A permissive approach may lead to wider spread that may be more difficult to control, a situation that is potentially more harmful to citizens. Conversely, stricter screening is likely to ensure safety for women, although ethical challenges may emerge such as what measures to take when a traveller tests positive and a treatment centre is just across the border. In addition to the laxity in screening, addressing the reported breakdown of border screening equipment should be prioritised. In Kasese District, which borders DRC, where there are existing Ebola Zaire infections, the thermal scanner at Bwera Border Point, a key equipment for detecting unusual body temperatures of travellers, was damaged in a fire incident six months ago and has yet to be repaired or replaced.Public health officials must take urgent measures to replace the machine, especially now that there is a renewed disease outbreak. Purchasing a new screening machine is a more strategic investment than saving the money only to lose it in latter attempts at saving lives at risk.The second area of concern is the ethics of information sharing. Information regarding the Ebola virus disease should be shared in a timely and accurate manner so as to facilitate appropriate response and caution. Although the gender proportions in all deaths resulting from Ebola need to be empirically confirmed, this reality is significant enough to cause concern for women, lest women think they are at lower risk given information about deaths that have been publicised. The point I seek to make is that gender is not routinely reported, and should be, to ensure transparency about the burdens carried by gender. Although not specific to women, transparency and truthfulness need to be key to communications about the current Ugandan Ebola outbreak. Failure to be transparent and truthful can fuel suspicions and rumour.
 
The third concern is the need to provide support for women in order to strengthen their ability to care for others. Experts have advised that caregivers should provide plenty of drinks – water, soup, tea or locally available beverages - to an Ebola patient and, if possible, encourage them to feed “little by little, spoon by spoon”. Yet, against such advice, there is no mention of provisions of any kind of food or protective material. And this is where the rights of women are at the core of the epidemic. In many parts of Africa, it is commonly the case that women take on the roles of the provision of water and food, having to fetch, cook, serve, and feed the patient, then clean up. In other words, patient care is very much seen to be a duty of women in African societies. Only in extremely rare instances will the men take up these roles. Because getting water and food is not always an easy task, women are forced to spend time and energy away from home in doing so, before getting back home to provide the necessary care. It is a necessary and important role in health care, although it remains largely unrecognised and unsupported. Although it may not be practically possible to give support to everyone at all times, it is something worth considering during an outbreak that has the potential of turning into an epidemic. Water can be distributed better and made easily accessible during such times, and healthcare professionals may be mandated to distribute protective materials, not just among themselves, but also among women, most of whom are the primary caregivers at home.
 
The fourth area of concern is on the potential conflict between the government instructions for the prevention of Ebola and the burden that women have to bear to ensure compliance. As the Uganda government instructs citizens to be responsible in preventing the spread of Ebola, one of the main areas of focus is on reducing the risk of transmission at home. The points of instruction include the following: noting that individuals at risk include those that spent time with and attended the burial of an Ebola victim; isolate an Ebola patient at home; using separate plates, cups, and utensils (spoons, forks), toothbrushes, and other items; designating one family or community member to care for the Ebola patient; avoiding physical contact and treating all of an Ebola patient’s body fluids including stool, vomit, blood, breast milk, sperm, urine, and sweat as dangerous; wearing impervious gloves if the caregiver must touch the patient; put soiled clothes, towels, and bed linens in a plastic bag and incinerate; using personal protective equipment (PPE) if providing extended care at home to Ebola patient, and regularly washing or sanitising hands; if the patient vomits, has diarrhoea or starts to bleed, transporting them immediately to a hospital.The public has also been advised to visit healthcare facilities whenever Ebola is suspected. The government of Uganda has strengthened the level of preparedness for the rural districts and built the capacity of the health facilities in terms of infrastructure, logistics, and improving knowledge of health care workers. However, to ensure the appropriate management of patients, the burden heavily falls on women in the families for resourcing, implementing, and supervising. The duties of creating space for a patient, setting aside separate utensils and ensuring they are clean, caring for an Ebola patient, cleaning away an Ebola patient’s body fluids, touching a patient for cleaning and comfort, putting away and incinerating soiled clothes, towels, and bed linens, and ensuring the use of PPE, if they are available, are all duties that disproportionately fall on woman’s in the provision of care for patients. The challenge is that they are burdensome responsibilities, which, in times of emergency, need to be shared between men and women. Women may suffer psychological consequences from the burden of their care work, especially if caring for loved family members that suffer from a disease that has such poor outcomes. Furthermore, social expectations they take on when caring for ill family members are likely to impair women’s ability to continue to generate an income. These consequences need to be recognised and responded to if women are expected to play a major role in averting or addressing this latest Ebola outbreak, and also if women’s rights, health, and safety are to be respected.
 
The fifth concern is the right of pregnant and lactating women to safety and precautionary care, especially since Ebola negatively affects pregnancy outcomes and increases mortality in pregnant women. Furthermore, it is difficult to coordinate between Ebola services and reproductive health services (Editorial, 2020). When the care and safety of a pregnant woman is delayed during Ebola emergencies, there is a risk of losing both mother and child. There is also the need for extreme caution so that any pregnancy-related bleeding is not mistaken for Ebola symptoms for which a pregnant woman may be transferred to Ebola care facilities despite not having Ebola. And just as test equipment are availed for detecting Ebola, “…facilities must be in place for the testing of breastmilk and appropriate milk substitutes must be made widely available for infants at risk”. This is to help reduce or prevent mother-to-child transmission of Ebola.
 
If these five areas of concern are addressed, the rights of women will be better taken care of, and consequently the health needs of the people will receive stronger support. Conversely, if these rights are neither recognised nor addressed, communities will struggle to achieve remission and safety from Ebola. Furthermore, addressing these rights will help slow down and prevent the spread of the disease. These rights include the right of women to safely access open-air and cross-border markets in order to provide basic necessities to their families, the right to accurate and reliable information and updates, the provision of necessary equipment and facilities to improve safe care at home, facilitation of capacity for enhancing prevention of further spread, and the right to safety for pregnant women and lactating mothers. 
 
Author:
 
Tom J. Obengo is a Post-Doctoral Research Fellow in Epidemic Ethics in the Department of Medicine at the University of Cape Town, Cape Town, South Africa. His work, including this piece, is supported by a Department for International Development/Wellcome - Epidemic Preparedness Grant 221559/Z/20/Z.
 Correspondence: tom.obengo@uct.ac.za
 ORCID: https://orcid.org/0000-0002-1002-7122
 
References
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WHO. 10th November 2022. Ebola disease caused by Sudan ebolavirus – Uganda [Online]. World Health Organisation. Available: https://www.who.int/emergencies/disease-outbreak-news/item/2022-DON423 [Accessed].
 
 

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