Even though leprosy can be completely cured, the people affected by the disease are considered as social outcasts in many parts of the world
WHO in its 2021-2030 Global Leprosy Strategy, has set a target to reduce 30 per cent of the total Leprosy cases worldwide. Government and organizations across the world are on a journey, in the post-COVID world, aiming to minimize the spread of leprosy. Currently, more than 200,000 people are being diagnosed every year worldwide. India reported 1,35,485 new cases during the year 2016-17 and 88,166 cases were recorded as of March 2017.
Leprosy can be viewed as a motorcycle whose, front wheel is about the efforts being made to eliminate the disease and the back wheel is about dealing with the stigma attached with the disease. Even though leprosy can be completely cured, the people affected by the disease are considered as social outcasts in many parts of the world.
Leprosy, what have we done to control it?
Leprosy, which is a chronic infectious disease, generally manifests after five years of getting infected, as it multiplies very slowly. It mainly affects the skin, the peripheral nerves, mucosa of the upper respiratory tract, and the eyes. The only way of transmission is from an untreated leprosy-affected person via droplets released from respiratory tract into the environment, which enter a healthy body through the respiratory system and migrates to nerves and skin (which may cause permanent disability if not treated).
Although India is known as the leprosy capital of the world, it is to be noted that we are also the country that works most aggressively on the detection of new cases and their treatment. Leprosy cannot be eradicated in a day; we can only ensure that we detect all the possible cases so that the spread can be controlled. This will further lead to eradication of the disease in the next 20-30 years.
The Government of India has been working on various initiatives to control the spread of leprosy in the country. Some of them are mentioned below:
The National Leprosy Control Programme was launched by the Government of India in 1955. After introduction of Multi Drug Therapy (MDT) in 1982, the programme was converted into the National Leprosy Eradication Programme (NLEP) in the year 1983, with the objective of achieving total eradication.
Percentage of Grade II Disability (G2D)/visible deformity among new cases decreased from 3.05% in 2018-19 to 2.39 per cent (2019-20).
The G2D amongst new cases/ million population decreased from 2.65/million population as on 31 March 2019 to 1.94/million population as on 31 March 2020.
Child cases percentage has reduced from 7.67% as on 31st March 2019 to 6.86 % as on 31st March 2020.
“Sparsh Leprosy Awareness Campaign” (SLAC) was launched on 30 January 2017, to increase awareness about various aspects of leprosy and remove stigma associated with leprosy. Nationwide village Gram Sabhas are organised in collaboration with the associated parts of the health department. Necessary communication from the District Magistrates and appeals from Gram Sabha Pramukh to reduce discrimination against persons affected with leprosy are shared; pledge is taken by all Gram Sabha members to reduce the burden of disease in the community. People are encouraged to participate in these gatherings, and school children are motivated to spread awareness about the disease through plays, posters etc.
A case insight: The plight of a leprosy patient
India was declared a “Leprosy free nation” was back in 2005 but to this day, about 60 per cent of all leprosy patients live in India. There are 750 odd leprosy colonies in India that reside the families of people who have this disease.
“Ever since my husband died and my daughters got married, it is just me inside these four walls,” says Sunitha, a habitant of Leprosy Colony in Seelampur, Delhi. “When he was alive, he used to earn. Now that he has left, I have to look out for my survival. Begging is the only option I have, there is too much red tape to get the Leprosy pension and I can’t work anywhere owing to my condition.”
Just like Sunitha, there are thousands of Leprosy affected people who had to resort to begging to make ends meet. Sunitha never had it easy, which made her go from strength to strength and face everything she had to with remarkable poise and dignity.
“I was a young bride when we were excommunicated from our family,” remembers Sunitha. “We came to Delhi in search for a cure but by the time I got medicines, the nerve damage to my hands was irreversible.”
Sunitha has two daughters, both married to families living in Andhra Pradesh. “I used to visit my daughters every year but due to coronavirus, I haven’t visited them in two years. My grandchildren must have grown a lot in that time. My biggest fear is that just like my old family, they will also get scared when they meet me next.”
But Sunitha is used to this thought. She has been conditioned to have a thick skin after years of getting dealt the bad cards. This resilience is exactly why she is a warrior and not a survivor.
We must educate everyone around us about the evils that leprosy patients have to go through each day. We are not in the 20th century anymore; it is time to stop being afraid of things we do not understand and start understanding.
Various NGOs, not-for profit organizations and corporate CSR wings also, come forward from time to time and join hands with the government to aid in the reduction of Leprosy. Various such initiative involves, programmes that provide training on diagnosis, treatment, and management of leprosy to medical practitioners, healthcare staff and volunteers, with the aim to raise awareness of leprosy among them. Door-to-door surveys are being conducted by trained health workers to identify people with undiagnosed cases of leprosy and refer them for diagnosis and treatment. Support systems are created to aid people afflicted by leprosy, so that they feel confident to come forward to seek treatment and help. Physiotherapy & Disability Care Camps are organised at different locations to help rehabilitate leprosy patients in advanced stages of the disease.
The Leprosy Control Programme in India is one such initiative by Rotary, its aim is to create mass awareness about leprosy, reduce stigma and discrimination in the community, and focus on early detection of cases. They have allocated funds for the Leprosy Control Programme in India and earnestly participate in active case finding.
Is the situation really under control?
Post COVID new initiatives have been taken to eliminate Leprosy from the country. Enhanced active and early case detection strategy has been introduced through ACD&RS (Active Case Detection and Regular Surveillance strategy throughout the year). Convergence of leprosy screening for targeting different age groups like under RBSK (for 0-18 yrs), RKSK (13-19 yrs), and CPHC – Ayushman Bharat (above 30+ yrs population). Timely referral and follow up for treatment completion on time through Multi Drug Therapy (MDT) is available free of cost in all public health facilities. For prevention of leprosy amongst contacts: Post Exposure chemoprophylaxis administration (PEP) is also available.
The global leprosy scenario has drastically improved over the last four decades after the introduction of various leprosy programs and MDT. There has been a significant reduction in prevalence, from over five million cases globally in the mid-1980s to less than 200,000 cases at the end of 2016.
The programme in India also saw a reduction, from a prevalence rate of 57.8/10,000 in 1983 to less than 1/10,000 by the end of 2005. In this year, India was declared to have reached the World Health Organization (WHO) target of elimination as a public health problem.
The author is Chairman, Rotary Club Alliance for Leprosy Control. Views are personal.