Quarantined For Life – Leprosy & Leprosy Colonies In The 21st Century

People affected by leprosy have been quarantined for life in leprosy colonies

Since March 2020, our lives have been dictated by the COVID-19 pandemic, and it appears that the same will continue to happen in the foreseeable future. It seems, we will have to live with this situation and follow the laws and regulations.

But this is not India’s or the world’s first experience with a pandemic or other infectious disease. Leprosy, one of the oldest diseases known to man, has continued to impact the lives of millions of people for more than a century.

During the height of the coronavirus pandemic, millions of people around the world were confined for months at a time when lockdowns were imposed. People affected by Leprosy have been quarantined for life in leprosy colonies. Despite the cramped living conditions, open sewers and piles of garbage, social exclusion, and age-old stigma, life of persons affected with leprosy living in leprosy colonies is as miserable as one may imagine.

Although the prevalence of leprosy has significantly reduced in India, it still exists. Unfortunately, 60% of all cases reported in the world today are from India, this amounts to 120,334 cases every year. Which indeed is an area of concern.

In India, in 128 out of more than 600 districts, 1 person for every 10,000 people is infected with leprosy and 53 districts report more than 2 cases for every 10,000 people. Eighty percent of these cases come from Bihar, Chhattisgarh, Jharkhand, Madhya Pradesh, Maharashtra, Odisha, and Uttar Pradesh. This is worrisome because the reasons of prevalence are addressable and remain largely the same, that is, delay in testing, diagnosis and treatment, among others. Adding the social stigma attached to the disease to the mix makes this a much harder task to address.

India in 2005 declared leprosy was no longer a public health problem, yet it still accounts for most of the world’s cases

But it's not all about the facts and figures. It has nearly an apocalyptic effect on the lives of those who are impacted, as well as their families. The social ostracization of people with leprosy and their loved ones in the society is still going on. Furthermore, as their sickness progresses, it becomes increasingly difficult for them to earn a fair living and live a dignified life, trapping them in a vicious circle of poverty and isolation. As a result, lowering the burden of leprosy is as important as it has ever been.

In addition to the National Leprosy Elimination Programme, various civil society organisations such as the NLR India Foundation, among others are working at the ground level in highly endemic states such as Bihar. - The drivers of our interventions are “THREE ZEROS”- NLRIF supports the National Leprosy Eradication Program (NLEP) to achieve the “Three Zeros”- Zero Transmission, Zero Disability and Zero Exclusion.

NLEP is a centralised scheme of Ministry of Health and Family Welfare (MoHFW), Government of India (GoI) which provides the platform for conducting all the activities related to leprosy & leprosy-related disability.

NLRIF work with the affected community through efforts to improve the prevailing issues of delayed diagnosis, lack of uptake of timely treatment, generating awareness in the community.

Despite the need for and availability of effective interventions, challenges still remain. Currently, the greatest problem is that, while there is a significant deal of need, resources are insufficient due to the disease's waning focus.

The government's or public health organisations' efforts alone will not be enough to tackle the crisis of leprosy. Stakeholder support is critical to further reducing the number of leprosy cases by allocating enough resources and paying attention to the disease and those affected by it so that they can live a dignified life.

Let us eliminate leprosy from the world, one district at a time.