It is nearly 11 years since leprosy was officially declared eliminated as a public health concern in India. India was officially declared to have eliminated leprosy in 2005 when new cases fell to less than 1 per 10,000, yet India still accounts for the largest number of leprosy affected people in the world (58 per cent) with a registered prevalence of 86,319 and 1,25,785 new detected cases.

Lack of awareness, myths, socio-cultural beliefs, and the stigma attached to leprosy are perhaps the most pressing problems before public health activists today.

Leprosy institutes under the Directorate General of Health Services, based in Tamil Nadu, Chhattisgarh, Orissa and West Bengal, are involved in the research and training of different categories of staff involved in leprosy elimination. However, over the years, their programmes in the management of referral patients, in providing quality care and in providing consultancy services to the State National Leprosy Eradication Programme units have become diluted with the inclusion of leprosy into the public health programme. In addition, doctors and health workers at the primary health care level are sometimes unable to detect silent neuritis, atypical presentations, or reactions at early stages.

Key challenges

Major concerns include undetected new cases, problems with leprosy integration, the presence of leprosy in children, obsolete discriminating laws and paucity of education and training for livelihoods. Globally, the difference between the expected and observed numbers of new cases of leprosy between 2000 and 2012 is approximately over 2.6 million. This number is expected to increase to over 4 million by 2020.

In India, a total of 11,365 child cases were recorded last year, indicating a child case rate of 0.88/100,000 population, a reduction in child case rates from 2013-14 by 7.4 per cent. Despite this, it needs to be emphasised that leprosy causes a negative impact on children’s life, study and work. Besides, there are a total of 295 obsolete laws, including an 1898 Act which discriminates against leprosy affected people. One of them is the Hindu Marriage Act, which considers leprosy a ground for divorce. Many States in India prohibit leprosy patients from running in local elections and deny them employment privileges and benefits. Those who manage to go through school cannot afford higher education as begging is the only source of income for their parents.

Way forward and steps required After achieving the target of elimination at all levels, the emphasis must shift to more policy level changes and sustaining quality of services. The Indian government has not taken any pro-active steps to modify or repeal leprosy laws, or to eliminate discrimination against persons affected by leprosy. It needs to pass The Repealing and Amending (Fourth) Elimination Discrimination Against Persons Affected by Leprosy (EDPAL) Bill, 2015 (introduced last year) in the next Parliament session, and implement the key recommendations of the Law Commission on rights and special privileges.

Multi-stakeholder partnership is of utmost importance to ensure that leprosy remains on the health agenda as long as it is necessary. Government, NGOs and private agencies need to work together in a coordinated fashion. Continued training of medical officers, nurses, physiotherapists, and paramedical workers about quality diagnosis and treatment of leprosy must also be given prime focus. Rampant stigma against the disease prevents patients from seeking medical treatment till it can no longer be hidden. By then, nerve damage is irreversible and disabilities have begun to set in, making social rehabilitation that much more difficult. A large number of leprosy affected fall in the category of persons with disabilities as they hesitate to come forward for treatment.

Public education, therefore, on the fact that leprosy can be cured and is not to be feared, is imperative. Those who have been cured at an early stage and can work often need to given opportunities to learn skills and trades that would enable them to work. They also can be assisted with links to financial institutions and special bank loans which would enable them to start a livelihood initiative on their own.

Leprosy is one of the most misunderstood diseases of the world; it poses some unique challenges in its control and elimination. A careful examination of the theoretical and practical approaches of the past can provide vital insights for the future. To reduce the burden, it is important to develop a holistic and multi-pronged approach that includes key policy changes, a public education campaign, sustainable livelihood programmes, skill training workshops and bringing in other medical stakeholders to generate employment, identify interventions to dispel stigma and mainstream the affected people. Policymakers, health professionals, civil society and public health activists — each of them needs to act as a change agent through their representational, legislative and activists roles to win the war against leprosy.

The writer is the executive director of Sasakawa India Leprosy Foundation

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