We must encourage and facilitate productive and collaborative conversations around leprosy

Dr Vivek Lal, CEO, Sasakawa India Leprosy Foundation in an interaction with Express Healthcare talks about current scenerio of leprosy in India and work done by Sasakawa India Leprosy Foundation

Please tell us a little bit about the work done by Sasakawa India Leprosy Foundation

Sasakawa-India Leprosy Foundation (S-ILF) was established in 2006 as a Trust by Yohei Sasakawa of Japan (who is the WHO Goodwill Ambassador for Leprosy elimination & the recipient of the prestigious Gandhi Peace Prize 2018). S-ILF works towards mainstreaming persons affected by leprosy & their families through socio-economic empowerment, thereby fighting stigma & restoring dignity in the lives of those affected by the disease. The major areas of focus are:

• Providing grants & technical support through training for setting up micro-enterprises for self-employment
• Providing access to vocational training & higher education through scholarships to children belonging to families affected by leprosy
• Addressing water, sanitation & hygiene issues in leprosy colonies for improvement in overall quality of life
• Creating awareness about leprosy among all sections of society to fight stigma & discrimination
• Engaging with opinion & policy makers for the rights & inclusion of persons affected
• S-ILF has been able to reach out to more than 2500 beneficiaries through its livelihood’s initiative across 18 states in the country; provided opportunities for higher professional education to more than 250 scholars; skilling courses in retail, electrical & hospitality for high school drop-outs & more than 400 children benefit through after school learning centres, which run from within the colonies across 11 locations in the country. Through its various awareness campaigns around leprosy, it has reached out to more than 20 lakh people. For the implementation of its programs, S-ILF works in close collaboration with the Association of People Affected by Leprosy (APAL).
• S-ILF has been working relentlessly across leprosy colonies in the country. Residents of these colonies are largely dependent on begging or manual labour for their livelihoods. As a result of financial constraints, they are unable to provide higher educational opportunities to their children. Girls from leprosy affected families are far more likely to remain excluded. Providing opportunities for higher education to children in these colonies helps to not only break the cycle of poverty for the families, it also is a means of restoring dignity in their lives.

Can you briefly discuss the history of leprosy in India?

Leprosy is possibly the oldest infectious disease known to mankind which finds a mention in Vedas and Bible. Early diagnosis and treatment with multidrug therapy (MDT) has remained the cornerstone of leprosy control.

Globally, more than 200,000 new cases of leprosy are detected every year; 60 percent of these belong to India, alone. One of the biggest challenges in the battle against leprosy is the fact that one in every ten new patient is a child aged less than 15 years, signifying continued transmission of the disease in community.

Delayed diagnosis and treatment of leprosy can cause progressive and permanent damage to the nerves, limbs and eyes, leading to new cases being detected with visible deformities or grade-2 disabilities. This has often led to stigma and discrimination and the disease being referred to as a ‘social disease’.

Additionally, people affected with leprosy may need long-term care and support much beyond the duration of multi-drug therapy. Management of complications like reactions, ulcer care, reconstructive surgery, physiotherapy and provision of customised footwear requires well-trained personnel with expertise in leprosy.

India achieved elimination of leprosy in the year 2005. Unfortunately, the WHO-defined target of elimination as a public health problem (prevalence of <1 per 10,000 population), was misconstrued to disease ‘eradication’ and lead to confusion among general public and even within the medical professionals

A recent paradigm shift has brought to focus the importance of leprosy disease burden in terms of new cases detected with visible deformities or grade-2 disabilities. A high proportion of grade-2 disability is indicative of delay in detection of leprosy cases and a possibility of hidden cases in the community. One of the key reasons for the disability is a delay in diagnosis of leprosy. There is need for wider awareness about the signs and symptoms of leprosy and reactions among general healthcare staff as well as in the community to promote self-reporting, as well as early diagnosis and proper management of the disease and its complications in an integrated setting. “Care after cure” that includes management of ulcers and other long-term complications is also important

In line with the global trend, there was a drop in resources for carrying out leprosy activities in India as well after it was declared eliminated as a public health concern in 2005. This has contributed to late detection, resulting in the increasing rate of patients already disabled at the time of the diagnosis. This needs to be corrected as undetected cases and untreated patients can transmit the disease to the susceptible population.

Although leprosy is the least infectious disease, it is still highly stigmatised in the society. What must be done to improve the state in India?

We must encourage and facilitate productive and collaborative conversations around leprosy, through various campaigns, to create awareness about this disease and fight the stigma associated with it. This will help people to cope with unknowns related to leprosy which is the biggest barrier to treatment-seeking behaviour. In this respect, it is important for the government and all the stakeholders which include teachers, students, artists, doctors, corporates, celebrities, and NGOs to mount a nationwide campaign to change the public perception of the disease.

Early detection, timely containment, and prevention of spread are key to containing leprosy which is among the least infectious diseases. The fact that new instances of leprosy are reported even after a decade of its elimination as a public health problem highlights the need to do more to prevent its occurrence.

How can the National Leprosy Eradication Program be made more effective?

Leprosy control programs over the years have rightly adopted the approach of early case identification through household contact examination for the detection of new disease cases.

ASHAs (Accredited Social Health Activist) acts as a critical link between healthcare delivery systems and leprosy affected populations. ASHA workers are an important part of the surveillance system established to detect and report leprosy cases in the community. They monitor the regularity of treatment, encouraging self-care for prevention of disability and completion of treatment, counselling the persons affected by leprosy and family members as per their needs.

To further reduce the delay in seeking treatment among persons affected by leprosy, a system needs to be evolved to ensure the structured involvement of the private sector, including private-for-profit and informal healthcare providers. Informal health care providers such as rural medical practitioners, pharmacy workers, quack, traditional medical practitioners, etc. comprise a significant component of health systems in India, particularly for the poor. As their involvement can have a huge positive influence on the treatment-seeking behaviour of people infected with leprosy, informal healthcare providers must be identified and trained to ensure appropriate referral and timely start of treatment.

Social aspects of leprosy

• Stigma against leprosy results in social & economic marginalisation, discrimination & deprivation of not only those affected, but also their families including children, who themselves may not be affected by the disease.
• Leprosy is as much a social as medical condition. Despite being a curable disease for which treatment is available free of cost, there are several prevailing myths including the disease being hereditary & caused by divine punishment for past sins, largely stemming from the ‘fear of unknown’ or lack of awareness about the disease. A major obstacle to the uplift of the status of persons affected by Leprosy is the social stigma arising from the disabling & disfiguring nature of the condition in a few of those affected.

What are your views on the presence of leprosy colonies in India?

There are more than 750 leprosy colonies in India housing persons affected by leprosy who had visible deformities & were driven out of their homes. Such affected persons continue to live there, now with their second & third generation of children. Apart from lack of land ownership & basic civic amenities, residents of colonies continue to be discriminated against & lack educational & employment opportunities.

What are the legalities around leprosy affected people in India?

Several Indian laws are both directly as well as indirectly discriminatory against persons affected by ;eprosy. No less than 119 statutory provisions have been identified which are discriminatory against people affected by leprosy. Certain provisions under the Hindu Marriage Act, 1955, the Dissolution of Muslim Marriage Act, 1939, the Indian Divorce Act, 1869, the Indian Christian Marriage Act, 1872, the Special Marriage Act, 1954 and the Hindu Adoption and Maintenance Act, 1956, are directly discriminatory against Persons affected by leprosy and consider Leprosy to be an ‘incurable and virulent’ disease. An infection from leprosy, under these legislations, serves as a legitimate ground for divorce or separation between spouses. Such outdated provisions denied them access to public services, impose disqualifications on them under personal laws and prohibited them from occupying or standing for public posts or office. A few discriminatory provisions have been repealed or amended. Recently, the Indian Parliament passed the Personal Laws Amendment Bill, 2018, removing leprosy as a ground for divorce. Certain states have also begun to repeal these discriminatory laws. However, several of these laws still remain.

What is the way forward to effectively ensure inclusion for leprosy effected people in India?

Clearly our vision for a leprosy free world: free from disability and ensuing stigma and discrimination remains elusive; unless urgent attention and support is provided. Timely detection of cases remains the cornerstone in leprosy control programs. At present, we have neither the knowledge nor the tools to eradicate leprosy. At the same time, mainstreaming of persons affected by leprosy and their families by providing equal social, economic and cultural opportunities and providing an enabling environment is important way forward.

For a country with a more than 1.2 billion population and the highest burden due to leprosy, success would be determined by strengthened partnerships and complementary roles played by government, international organisations, local NGOs, communities and people affected by leprosy.