Household Costs of Leprosy Reactions (ENL) in Rural India

Abstract

BackgroundErythema nodosum leprosum (ENL) is a common immune-mediated complication of lepromatous (LL) and borderline lepromatous (BL) leprosy. Most patients experience chronic or multiple acute ENL over many years during an economically active period of their lives. Understanding the economic burden of ENL is essential to provide effective patient support, yet this area has not been investigated.MethodsNinety-one patients with LL or BL leprosy attending a leprosy hospital in Purulia district of West Bengal, India, were interviewed using a structured questionnaire. Cases (n = 53) were identified as those who had one or more episodes of ENL within the last 3 years. Controls (n = 38) had LL or BL leprosy but no history of ENL. Data were collected on household income, direct and indirect costs, and coping strategies.FindingsThe total household cost was Rs 1543 per month or 27.9% (IQR 13.2-52.6) of monthly household income for cases, and Rs 237 per month or 4.9% (IQR 1.7-13.4) of monthly household income for controls. Indirect costs accounted for 65% of total household costs for cases. Direct costs accounted for the remaining 35% of household costs, and resulted almost entirely from treatment-seeking in the private sector. Total household costs exceeded 40% of household income for 37.7% of cases (n = 20) and 2.6% of controls (n = 1) [1 USD = 59 INR].InterpretationHouseholds affected by ENL face significant economic burden and are at risk of being pushed further into poverty. Health policy should acknowledge the importance of private sector provision and the significant contribution to total household costs of lost productivity (indirect cost). Further work is needed to explore this area and identify solutions.

Apremilast in chronic recalcitrant erythema nodosum leprosum: a report of two cases

“…4 ENL adversely affects health-related quality of life and carries a significant economic burden, with decreased productivity. 5 Mild episodes of ENL respond to adequate rest and anti-inflammatory medications like oral aspirin. The management of severe and recurrent or chronic ENL is difficult and often requires systemic agents like corticosteroids, thalidomide, clofazimine or minocycline either alone or in combination for many months.…”

“…Pathogenesis involves a possible role of immune complex deposition, with elevation of proinflammatory mediators such as tumour necrosis factor (TNF)‐α, interferon (IFN)‐γ and interleukin (IL)‐2, IL‐6 and IL‐12 . ENL adversely affects health‐related quality of life and carries a significant economic burden, with decreased productivity . Mild episodes of ENL respond to adequate rest and anti‐inflammatory medications like oral aspirin.…”

Leprosy as a model to understand cancer immunosurveillance and T cell anergy

“…This ancient disease is often forgotten by the layperson in the developing world. Nonetheless, the disease is still prevalent in the developing world and poses a significant health and economic burden on these societies [6]. Whereas drugs are available for the treatment of leprosy, it often leaves cured patients with permanent neurologic deficits and significant tissue damage.…”

Integrated Care and Leprosy in India:A Role for Indian Systems of Medicine and Traditional Health Practice in the Eradication of Leprosy

“…The Community Dermatology Society of India, inaugurated in 2015, is strongly supportive and will become a resource for training of family practitioners in the management of leprosy for a number of reasons. Its self-help interventions are lowcost and appropriate to the needs of those affected, who often have very limited resources 7,8 ; It focuses on the strengthening of general health services, at the primary care level, thereby improving access to appropriate advice and treatment for patients. It collaborates with other relevant health professionals and forms teams which integrate with other systems of medicine, for example, Ayurveda.…”