Case-finding or screening is one of the primary weapons in the fight against leprosy. Finding people affected by leprosy enables them to receive treatment which prevents disability and further spread of the disease. However, there is often a gender disparity in new cases of leprosy found with a lower proportion being female. The Leprosy Mission International – Bangladesh (TLMIB) and their partners, supported by The Leprosy Mission England and Wales (TLMEW), have made significant progress in recent years, both in increasing the numbers of new cases they detect annually and in improving the gender balance of new cases found.
Leprosy is a bacterial disease that continues to impact the lives of millions of people around the world with approximately 200,000 new cases each year. Leprosy has a long incubation period (usually between 2-10 years but sometimes much longer), is minimally contagious, and is treatable with multi-drug therapy (MDT). However, if not treated, leprosy can cause permanent loss of feeling, loss of mobility, repeated ulcers and infections which often lead to deformities of a person’s hands and feet and even amputations. These visible complications also often lead to stigma and social exclusion. Early diagnosis is therefore essential to prevent disability and to minimize the risk of infection in close contacts.
Much leprosy case-finding happens at ‘skin-camps’ or pop-up clinics, often in community hubs, where people are encouraged to come forward for screening. Trained community volunteers and health workers look and test for the numb skin patches which are often the first sign of leprosy. Where leprosy is suspected, the person is referred for treatment. Their close contacts are also traced and checked for signs of leprosy. Active case detection, including contact tracing, is one of the WHO’s strategic pillars for eliminating leprosy. However, presently the majority of new cases found are male, despite evidence that both men and women are equally likely to contract the disease 1. Globally, only 38.6% of new cases found in 2020 were in women 2 and in some countries this was less than 20% 3. This leaves women vulnerable to a ‘triple jeopardy’ of discrimination due to gender, the stigma associated with leprosy and increased disability because of late diagnosis and treatment 4
TLMIB and their partners sought to address this problem by looking at their case-finding activities through a gender lens – considering what barriers to screening existed, particularly for women, and how those could be removed. It was noted that the majority of staff and volunteers were male. This could discourage women from coming forward for screening, particularly in conservative societies like Bangladesh, as a person’s clothing must be removed to allow the whole body to be checked for skin patches. Fear of the stigma associated with a diagnosis of leprosy presents a barrier for all people but can be more keenly felt by women as they are often more vulnerable to its effects, for example through divorce. Similarly, a lack of knowledge of leprosy may be a larger problem among women as they generally have lower levels of literacy than men and are less exposed to traditional sources of information. This can be magnified where a more passive approach to case finding is taken (i.e., reliance on people seeking out health advice and treatment for themselves).
Having identified these barriers, project leaders set about removing them. Female staff were actively recruited, including as project leaders, and financial incentives were offered to increase the number of female volunteers. Case-finding activities were organized so that there was always at least one woman present and alternative spaces were found which gave more privacy for screening. Screening within households during the day while men were at work was offered when extra sensitivity was needed. Partnerships were also formed with local NGOs who had already built trust with local women such as through running women’s empowerment groups and supporting women affected by domestic violence.
Other changes contributed to an overall increase in the number of new cases detected. The National Leprosy Elimination Programme in Bangladesh promoted a more active case finding approach and TLMIB project leaders worked with government health staff and community leaders to increase extended household contact surveys for all new cases. This also ensured women were actively reached. Mass media campaigns were also used to increase awareness, tackle stigma and encourage more people to come forward for screening and treatment. Through the NGO partnerships previously mentioned, awareness campaigns were tailored to ensure they would reach women.
Through these initiatives, TLMEW supported projects in Bangladesh have achieved a gradual increase in the number of new cases detected and a significant improvement in the gender balance with just over 50% of new cases in 2020 being in women. This success highlights the benefits of considering case-finding activities through a gender lens. The specific barriers and changes needed vary between different cultures and contexts and it must be remembered that gender issues affect men as well as women. Additional financial and human resources are often needed to address gender barriers, but this investment is essential if we are to end leprosy.
Shopna, is 25 years old and is a Field Organiser for Mukti, specifically assigned to leprosy. She’s only been doing the job for one month so is very new to it. Though she’s learning on the job her duties already include patient diagnosis, counselling meetings, raising awareness both with those affected and in the surrounding communities, plus door-to-door visits during contact surveys. She has been with Mukti for over a year, but was previously working on a project about nutirition. Before that she worked in a clinic doing sonography and as a lab technician. Though she learned some useful skills, the work there involved very long hours and she found she had no time to herself, so she began to look elsewhere.
She saw Mukti as an opportunity to work with different people.
“I enjoy this work as people don’t know about these issues, so I feel like I can help and do something for those affected. At the moment I’m just trying to give my best efforts to the job.”
She has been getting on-the-job training from Ripon, who is the other leprosy field organiser for Mukti, and Khaleq who often visits from TLMIB’s head office.
“When I visited the field last month, I felt very encouraged that if she visits more areas I can identify more people affected. I feel it’s such a great opportunity to work with them and help them get treatment in time. I feel really proud doing this work. Now so many women come to meet with me and talk about different issues.”
Shopna’s day usually starts at 9am in the office to plan any visits to the field. They might go to the field for a patient follow-up, or to screen if they’ve heard of any suspected cases, which they would then take to the local upazila or sub-district for confirmation. They also distribute MDT via the local government. Sometimes she is in the office doing paperwork, especially if there is an official task, or meeting, but otherwise she is mainly in the field, which she really loves.
Shopna is unmarried and lives with her Mum and Dad. She is Hindu, and says that may have inspired her to work with poor people. Shopna is still on a backfoot at first when visiting new areas, as Ripon has already established most relationships, but once she understands what’s going on she engages, asks questions, and I can see in her body language and gestures that she is very caring towards those she is meant to be helping in some way. It also helps that Shopna smiles and laughs a lot. Though she is sympathetic and understanding when the time calls, her brightness and positivity comes through much of the time and the people that she engages with connect with that and warm to her quickly.
The Leprosy Mission Bangladesh work with Mukti (an organisation working for women’s rights and care, based in Kushtia, founded by Momataze).
1) Scollard & Gillis. International Textbook of Leprosy. https://internationaltextbookofleprosy.org
2) World Health Organization. “Global leprosy (Hansen disease) update, 2020: impact of COVID-19 on global leprosy control.” Weekly Epidemiological Record 96 (36), 421 – 444. 10 Sep. 2021. https://apps.who.int/iris/handle/10665/345048
3) Rahevar, Kalpeshsinh et al. “Epidemiological review of leprosy in WHO’s Western Pacific Region: 1991-2019.” Western Pacific surveillance and response journal: WPSAR vol. 12,3 34-46. 23 Aug. 2021, doi:10.5365/wpsar.2021.12.3.858
4) ILEP. “Triple jeopardy: tackling the discrimination facing girls and women with leprosy” Mar 2015, https://ilepfederation.org/wp-content/uploads/2020/02/Triple-Jeopardy-IWD-2015.pdf