Priyanka Awana is a resident of the 70-acre Tahirpur Leprosy Complex in Delhi, the largest in Asia. Awana goes to a local school and says that she faces no discrimination even though she stays at Tahirpur. Contrast this with what her 62-year-old grandfather had to undergo 40 years ago: he was forced to drop out of college and leave home even though he was cured and didn’t require treatment since 1974.
There are around 850 leprosy colonies in India — largely unauthorised — housing 1.35 million people but today leprosy-affected persons no longer need to live in such ghettos. Their numbers are also dwindling. The last Socio Economic Statistical Survey of Leprosy Colonies in 2005 found that most of the colonies came up 30-40 years ago and since then, there has been a progressive decline to the point that no new colonies were being reported to be set up.
Improved treatment has helped to stop the isolation of leprosy-affected persons. Early diagnosis and quick, effective treatment now cure leprosy before it progresses to causing physical changes and disabilities. Despite being the world’s leprosy capital with over half of all new cases, India’s massive drive against leprosy saw it declaring in 2005 that the country had eliminated the disease as prevalence rates fell below one infection per 10,000 population. The turning point came in 1983 when the potent Multi Drug Therapy (MDT) was introduced and provided free of cost to patients. Though there is no vaccine, MDT cures leprosy in six-12 months.
The fast-changing epidemiology of the disease has outpaced anachronistic legislations that no longer reflect societal perceptions of leprosy or the new paradigm of human rights. The Rajya Sabha has been petitioned for reconsidering at least 16 discriminatory laws, framed on the basis of India’s Leper’s Act, 1898, which was repealed only in 1984. The Hindu, Muslim, Christian and Special Marriage Acts still declare ‘virulent and incurable leprosy’ — which no longer exists — a ground for divorce. The Indian Railways Act, 1989, permits segregation of people suffering from contagious or infectious diseases. The Prevention of Begging Act, 1959 allows detention of ‘lunatics and lepers’. Even the more recent Juvenile Justice Care and Protection Act, 2000, says children suffering from diseases like leprosy are to be separately dealt with.
Close to a decade after its national-level elimination, these laws need to be removed to erase all stigmas attached to the disease.
Rimjhim Jain is a Delhi-based independent writer
The views expressed by the author are personal