Neglecting the Neglected: Leprosy’s Tale Among Tropical Diseases

Authors: Ms. Sushree Nibedita Panda, MPH, Research Associate, LEPRA Society- Blue Peter Public Health Research Centre, Hyderabad, India & Mr. Manish Barik, MPH , Research Officer, Meta-research and Evidence Synthesis Unit, Health Systems Science, George Institute for Global Health, Delhi, India.

Leprosy is a major cause of preventable disability, posing significant public health concerns due to its potential for permanent physical deformities with serious social and economic consequences (1). India is one of the countries with the highest leprosy burden with more than 135,000 new leprosy patients being detected every year, including 5,245 (3.9%) new leprosy patients with a visible disability: grade 2 disability (G2D) (2).  Evidences depict that patients in India often overlook symptoms and refrain from seeking healthcare due to their lack of awareness or the belief that the symptoms will resolve on their own(3,4). The well-being and self-esteem of these individuals also diminished by pain, loss of the ability to walk, and loss of independence. The appearance and unpleasant odour of the lesions often lead to social isolation(5). As a result, people initially try self-treatment and patients usually contact general physicians when the problem progresses, and then seek the advice of dermatologists. Consequently, patients continue treating the skin issues without realizing the underlying disease. It is only when someone recommends leprosy testing or suggests visiting a specialized leprosy centre that individuals seek proper diagnosis and treatment.

This pattern highlights shortcomings in the referral system and a lack of awareness among individuals and healthcare practitioners in leprosy-endemic regions, resulting in delayed case detection and the emergence of visible G2Ds. Upon identification of their leprosy status, individuals often struggle to accept the reality.

During several interactions with leprosy affected people in highly endemic states (Bihar, Odisha and Andra Pradesh) of India, It was observed that those who were affected by leprosy at early age faced barriers in completing their education. Interactions with them also revealed instances where teachers prohibited them from attending school years ago. This discriminatory practice not only hinders the educational attainment but also unjustly limits them from their right to education. The suppression of their educational potential pushes them towards begging, particularly as their disabilities worsens over time.

Children identified with leprosy often hesitate to continue their education, particularly when they have visible disabilities. The challenges become significant when the disability affects their hands, making it difficult for them to write exams and progress to the next grade. However, fostering awareness among teachers and students in schools about leprosy will promote inclusivity, supporting affected children to continue are their education. Providing assistance for deformities during exams is crucial, encouraging them to pursue their right to education with confidence and equal opportunities and most importantly screening for leprosy at school level will contribute to early child case detection.

It is important to address the specific needs of individuals facing challenges such as foot ulcers due to leprosy, especially as they grow older. Transitioning from traditional Indian toilets to Western toilets could be a helpful intervention in reducing pressure on their feet and promoting better hygiene.

The first point of contact for individuals with leprosy is typically the nearby Primary Health Centre (PHC). However, due to unavailability of proper inpatient facility and complex ulcer care, patients often referred to the higher facilities like Community Health Centres (CHCs) or District Health Hospital (DHH). The challenge arises when reaching these health facilities becomes difficult for them. Given that leprosy is a disease often associated with poverty, the cost of transportation becomes a hurdle. Moreover, their complex conditions of ulcers or deformities add another layer of difficulty, leading them to avoid spending money or skipping day’s wage to reach the hospital.

Efforts should be directed towards enhancing health services to not only address the curative aspects and physical effects of diseases but also to prioritize the psychosocial and economic dimensions to address delay in care. In leprosy endemic region, it is essential to provide training on leprosy related ulcer care adhering to the guidelines for wound dressers/paramedical staffs at every PHCs. To ensure the sustainability of leprosy services in India, a strong and efficient referral network is required to address health system delay in treatment and reduce the out of pocket expenditure (OOPE).

Non-Governmental Organisations (NGOs) and CSR organisation provide technical training to acquire skills that will enable them to pursue income-generating activities and subsequently live a decent life. This noble work often hinders by lack of opportunities in the locality and discrimination towards the leprosy affected people. Even there are instances of people end up begging for a living.

In summary, the challenges in leprosy early detection, delayed diagnosis, and their impact on education and livelihoods emphasize the urgent need for comprehensive awareness and intervention. Closing referral system gaps, promoting inclusive education, and improving healthcare accessibility are crucial for alleviating psychosocial and economic burden.

References

1.        Stephen T, Selvaraj I, Parameswari PJ. Assessment of knowledge, attitude and practice about leprosy among patients and their families in a rural community in Tamil Nadu. Indian J Lepr. 2014;86(1):7–14.

2.        Central Leprosy Division. NLEP Annual Report 2015 – 2016. Natl Lepr Erad Program. 2016;

3.        Renita L, Pulimood SA, Eapen EP, Muliyil J, John KR. Health care utilisation in indian leprosy patients in the era of elimination. Lepr Rev. 2010;81(4):299–305.

4.        Sarkar J, Dasgupta A, Dutt D. Disability among new leprosy patients, an issue of concern: An institution based study in an endemic district for leprosy in the state of West Bengal, India. Indian J Dermatol Venereol Leprol. 2012;78(3):328–34.

5.        Yotsu RR, Comoé CC, Ainyakou GT, Konan N, Akpa A, Yao A, et al. Impact of common skin diseases on children in rural Côte D’ivoire with leprosy and buruli ulcer co-endemicity: A mixed methods study. PLoS Negl Trop Dis. 2020;14(5):1–20.