How Gender-Sensitive Responses can help eliminate NTDs

“They are hiding their skin so that people cannot see them. I have not heard of anyone who wants others to know about it. No one will allow them to lead, and many people ignore them. They are considered dangerous. People fear contact with them. I feel sorry for them. Even me, I feared that from staying and meeting them we could get the disease … They find it hard to marry, and marriages can break because of this condition.” [1]

In my opinion, this quote from a 25-year-old Ugandan woman in an area endemic for neglected tropical diseases (NTDs) sums up the situation of people who suffer from NTDs, particularly those that are visible.

Divided into parasitic, viral and bacterial NTDs, the group of 20 conditions classified by WHO as Neglected tropical diseases affect the poorest of the poor and the marginalized in society. Deeply rooted in local sociocultural contexts, infected individuals incur added burdens due to stigma, isolation and other negative consequences. Some NTDs cause blindness, others cause deformation, and others like Buruli ulcer require amputation, further compounding the challenges that infected people face. Whilst these conditions affect both men and women, young and old, they affect them in different ways. For instance, Urogenital schistosomiasis blights the lives of millions of adult men and women who currently do not have adequate access to point-of-care diagnostics or treatment. Contracting this disease whilst performing regular economic and household activities, while keeping their suffering due to a condition that affects the most private part of their bodies a secret becomes their shame when it is exposed.

Despite years of demographic transitions and increases in the availability and use of technology, better opportunities for young girls and women to go to school, increase in contact with other cultures, and change and revision of many laws, in many African societies, the traditional roles of men as bread winners and disciplinarians, and women as caregivers appears to not have changed much.

With women often the primary caregivers in households, they are usually surrounded by children, increasing the likelihood of repeatedly acquiring the eye infection that causes trachoma. Women are also less likely than men to access surgical treatment for advanced disease, and as a result, women are blinded by trachoma up to four times as often as men. The role of women as caregivers also extends beyond the household into their communities, with women often taking on the role of a community health worker (CHWs).  female CHW who is supporting the health system in Mass drug administration for NTDs can also face major challenges from within her family and community. A 38-year-old married female CHW shared a day in her life as follows:

“. . . . It was not easy finding people in the morning because they had gone to the garden, so it forced us to walk at night, hence we are requesting you to check on that. Like me (CHW) there is a day I came back very late. I came back at home like at around nine o’clock at night and I received slaps, but that didn’t make me leave my work (laughter). you know you have to show the old man (husband) that this job is not just a waste of time, not that every day you go out and there is nothing that he is seeing because if he becomes annoyed and chases you away you won’t go Bilharzia people (you will not go and live with the organization that is conducting bilharzia treatment).” [2]

This quote from a female CHW shows how involved they must be to ensure that the drugs needed to prevent NTDs reach the people who need it, but also the significant challenges they can sometimes face at home. When considering the impacts of Gender and NTDs, there is the need to understand the physical, socio-economic and cultural context within which interventions are delivered. NTDs are sensitive, private, and stigmatising, with the risk to exposure in endemic countries exacerbated by traditional gender roles and expectations. It is important to understand the issues at hand from the perspective of those living with these conditions, the unaffected people who provide care, and health care providers and CHWs operating in a complex and under-funded system. How men and women experience symptoms, their treatment seeking pathways, and the impact on their livelihoods and well-being are complex and poorly understood. This month, as we celebrate International Women’s Day, we must commit to researching and implementing gender-sensitive prevention, diagnostics, and treatment to ensure we reach the last mile and are able to meet the NTD elimination targets in the WHO NTD Road map.

1. presented in a paper by Weiss et al 2008
2. in a paper by Omedo et al 2013