Anti-Leprosy Day: Leprosy elimination needs a final push

India is home to the highest number of new cases of leprosy in the world. The World Health Organization data of the last 10 years reveals that the number of new cases in India reduced to 114,451 in 2019, from 126,800 in 2010.

However, what it conceals is vital: The country continues to bear more than 50 per cent of the global caseload. It also masks the fact that millions of people on the streets and in leprosy colonies across the country continue to face the consequences of leprosy.

Thousands of years after leprosy reportedly surfaced for the first time and decades after multi-drug therapy (MDT) was invented, we have still not defeated this bacterial disease.

Leprosy is unique. The bacterium — Mycobacterium leprae — divides only once every two weeks, which makes it difficult to link exposures to the development of disease. Its incubation period ranges from a few months to 20 years and more in some cases.

Moreover, the dead bacilli often linger in tissues for years, long after an individual has completed MDT treatment for a recommended period. Leprosy may be one disease, but it has many clinical manifestations — disfiguring skin lesions; damages to nerves in eyes, hands and feet; painless ulcerations of hands and feet; eye complications, including glaucoma — all leading to a poor quality of life.

Having said that, leprosy is not just a problem of disease, but also of perception. While it is important to dispel misconceptions around leprosy, it is equally important to explain its potential for causing a debilitating effect.

It is a fact that leprosy is only mildly infectious and about 95 per cent of people are immune to this disease; but it is also no fiction that it is the leading cause of disability among all communicable diseases.

While we bust the myth that leprosy causes fingers and toes to fall off, we must also reinforce the truth that delayed diagnosis of leprosy leads to damages in peripheral nerves, causing numbness in fingers and toes, which leads to repeated injuries and infection of numb areas and bones. They cause shortening of bones.

Leprosy is also a disease of neglect, that springs from a deeply entrenched stigma. The disease and its consequences cause such social devaluing of an individual that a person chooses to hide early lesions till the time the impairment becomes irreversible and lifelong disability inevitable.

Even after being diagnosed with leprosy, people discontinue visiting hospitals for regular treatment, fearing rejection from society. This leads to complications. Can you identify the dichotomy here? We take great strides forward with medical advances like MDT and reconstructive surgeries, but an exaggerated fear of the disease and repulsion to certain physical traits push us back.

The present and future

As if the struggle to end the vicious cycle of disgrace-delayed reporting-delayed treatment-disfigurement-ostracisation-disgrace was not enough, the novel coronavirus disease (COVID-19) pandemic reversed whatever little gains we had made in the last few years.

The pandemic overwhelmed the healthcare sector across the country, with hospitals and other health facilities making COVID-19 response their topmost priority. The challenge for the people affected by leprosy assumed greater proportions: A gap in health service needs.

As an organisation that has been serving people affected by leprosy for over 145 years, we pre-empted the crisis and launched both mobile therapy clinics for doorstep healthcare delivery and tele-counselling services, with the latter as early as March 2020.

In the process, we realised the huge need to bridge the patient-treatment gap. India has been steadily reviving its focus towards elimination of leprosy at a national level for a decade following the declaration of ‘Leprosy Elimination’ in 2005.

Since 2016, the government started taking proactive steps, including launching active case detection campaigns and awareness campaigns. In 2020, the new operational guidelines for active case detection and regular surveillance for people affected by leprosy were also introduced.

While active contract tracing, early case finding and prompt treatment are key interventions towards controlling leprosy, we must not lose sight of addressing social determinants of leprosy. The social constructs around the disease translate into a wide range of insecurities: economic, social, psychological.

Since prevention of disability is the key to reduce fear of stigma, we need to capacitate more staff at primary health centres for prompt diagnosis as these centres are the first contact for such populations. Together, we must work towards making non-formal practitioners in villages better informed about the early symptoms of leprosy and referral mechanisms in place.

The final piece of the puzzle is creating an enabling environment for people affected by leprosy. The organisations such as us have a common objective: To uphold the fundamental rights of people affected by leprosy and repeal laws that discriminate against them.

Recent developments give us hope that legal reforms are on the anvil, but it also needs a huge overhaul of mindset and notions to make those reforms effective.

To that end, we at The Leprosy Mission Trust India, have been training and motivating people cured of leprosy to be the Leprosy Champions in their communities. Their real-life stories of winning over the disease and living a life of dignity have great power to instil a sense of confidence in people. That’s half the battle won!

Mary Verghese is Executive Director, The Leprosy Mission Trust India

Views expressed are the author’s own and don’t necessarily reflect those of Down To Earth

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