Another disease of our time – leprosy

India is being ravaged by a second wave of Corona virus. The country is now the epicentre of the pandemic. Cases are escalating faster than anywhere else in the world. In the past 24 hours, more than 2,000 people have died and over 300,000 new cases have been reported. The real figures may be much higher. Hospitals are overwhelmed and have run out of oxygen. People are dying without receiving the treatment they needed. COVID-19 has hit India with a ferocity not seen before.

COVID-19 and leprosy

As the world is preoccupied with COVID-19, it is difficult to appreciate that there is another disease that has been around for thousands of years, before it was identified and an effective cure was found. Leprosy is that disease, and while its existence is well documented in the bible, Egyptian papyri, roman herbals and medieval manuscripts, its cause was not discovered until the pioneering work of Dr Gerhard Hansen in 1873 and a cure, as recently as 1980s.

Another disease of our time, leprosy
Women from a leprosy community in Tahirpur, outside New Delhi, wearing face masks to protect from COVID-19. Photo by kind permission of Arun Kumar

Coronavirus Disease 2019 (COVID-19), a disease caused by the betacoronavirus Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2), has only recently emerged, while Mycobacterium leprae, the etiological agent of leprosy, has endured for more than 2,000 years. As soon as the initial reports of COVID-19 became public last year, several entities, warned about the possible impact of COVID-19 on leprosy patients.

The chronic clinical course of the disease may be interrupted by acute inflammatory episodes named leprosy reactions. These serious immunological complications, characterised by cytokine storms, are responsible for amplifying peripheral nerve damage. From 30% to 40% of all multibacillary leprosy (MB) patients experience erythema nodosum leprosum (ENL), a neutrophilic immune-mediated condition. ENL patients often present these same COVID-19-like symptoms. The consequences of a M. leprae–SARS-CoV-2 coinfection have yet to be fully investigated.

Leprosy, an infectious neurological and dermatological illness, is widely considered to be the most frequent cause of physical disabilities globally.

COVID-19, leprosy, and neutrophils

Around 200,000 new cases of leprosy are diagnosed every year but the actual number of people at risk from leprosy or living with the effects of leprosy, such as blindness, amputated limbs or, its stigma and discrimination, is estimated at many millions more.

India is home to about 60% of the world’s burden of leprosy. World Health Organization WER 2020

Leprosy communities

India is also home to an estimated 1,000 leprosy communities or centres (once called leprosy colonies) where thousands of people live out their lives with the effects of this devastating disease. Most leprosy centres are remote because they are distanced from society due to fears of contagion. Their very survival often depends on the kindness of strangers.

Living conditions in the communities vary enormously. Some have brick houses and electricity, others have no running water or toilets. The social circumstances in which people with leprosy live therefore make them more exposed to COVID-19. Their level of poverty means they are less likely to have access to running water and other hygiene measures. 62% of rural SE Asia lacks basic access to water and sanitation services.

Because many people with leprosy have been ostracized from their homes and families, they are less likely to have anyone to depend upon if they need to self isolate.

A donation of food to Tahirpur leprosy community, Delhi. Photo by kind permission of Arun Kumar

With another lockdown approaching in India, underserved leprosy communities are once again at the brink of survival. It is only thanks to the efforts of leprosy advocate, Arun Kumar, that these women from a leprosy community in Tahirpur, Delhi have received a donation of food.

COVID-19 has further pushed leprosy communities to the back of the queue and out of mind.

Jason Osborne, The Irish Catholic

People with leprosy would be the last people on earth to receive a COVID-19 vaccine and people with leprosy AND COVID-19 suffer the injustice of “double-discrimination”

Arun Kumar, Leprosy Advocate

Disability and Discrimination

If left untreated, leprosy can cause visible disability and disfigurement. As a result, people fear catching the disease and leprosy-affected people are often subjected to stigma and discrimination. This means people with leprosy may hesitate to come forwards for medical treatment, such as COVID-19 testing and vaccination, putting themselves and their communities at greater risk.

My great concern is that people with leprosy may not be getting their core leprosy treatment as healthcare providers prioritise COVID-19 above all else. It is crucial that people with leprosy receive MDT otherwise there is a risk that they may develop terrible disabilities.

Clare McIntosh, Chief Executive, St Francis Leprosy Guild

Leprosy causes more physical deformity than any other infectious diseases.

World Health Organization WER 2020
A man whose hand has been effected by leprosy, Delhi, India. Photo by kind permission of Arun Kumar

NGOs such as St Francis Leprosy Guild, The Leprosy Mission and Lepra, focus on preventing leprosy, caring for and rehabilitating people already affected by leprosy and anti-stigma initiatives. They are faced with enormous challenges, especially with staff on the frontline where COVID-19 is spreading like wildfire and many are infected.

We already knew from our research (report) last year on COVID-19 that there were serious problems. All of the issues that persons affected by leprosy were already facing, like stigma, discrimination and difficulty in managing leprosy reactions were exacerbated by COVID-19 and, MDT and their normal medical services were not available to the same extent.

A trustworthy, third party told me that people affected by leprosy are denied both COVID-19 treatment and vaccines also.

This wave of COVID-19 is hitting India hard and it’s going to hit persons affected by leprosy even more.

Mathias Duck, Leprosy Advocate and Spokesperson for The Leprosy Mission International

We are proactively seeking out people with leprosy to test for COVID-19 and vaccinate as fast as our funds will allow – but we have to provide food too. In COVID-times, people with leprosy are not even allowed to beg. Every prejudice against people with leprosy seems to be compounded.

Geoff Prescott, Chief Executive, Lepra

The absence of antiviral drugs and the speed of COVID-19 transmission have had a major impact on public health systems worldwide, leading to the almost total collapse of many national and local healthcare services. Only time will tell how or if people with leprosy survive the COVID-19 pandemic.


Glossary

MDT consists of the generic drugs: dapsone, rifampicin and clofazimine. Early detection of people with leprosy infection and its prompt treatment with MDT is the time-tested stategy to cure leprosy. If left untreated, disabilities may start to develop with lifelong consquences of disability, stigma and discrimination.

MB or multibacillary leprosy is a form of leprosy where the patient experiences a very high bacterial load of M.leprae.

Leprosy reaction occurs when the immune system responds violently to dead leprosy bacteria. It is not a response to MDT.

Published by katharine@kvhcom

KVHcom.com is all about creative communications. A creative approach means not just an attractive visual appearance, but engaging text and an innovative approach to any project.

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