The World Health Organization (WHO) claims to have eradicated leprosy from most parts of the world. Yet in India, in a town called Bareilly in Uttar Pradesh, Ghulam Rasool, 60, killed his 25-year-old son who suffered from leprosy. This wholly avoidable death occurred as recently as April 2005.
Government figures indicate a dramatic decline in the prevalence of leprosy in India: from 57 per 10,000 in 1983 to 2.4 per 10,000 in March 2004. However, this significant achievement still leaves us with a sizeable population of leprosy-affected people - 0.26 million - which is approximately half the number of leprosy-affected people in the world today.
MDT (multi-drug therapy) was introduced on a global scale in 1985. The decline in leprosy worldwide is directly traceable to MDT, which completely cures the disease. Worldwide, the number of cases fell by 90 per cent - from 5.4 million in 1985 to less than 0.53 million at the beginning of 2003. WHO had set a target of reducing the incidence of leprosy to 1 per 10,000 persons by 2005, which has been declared the 'Year for Elimination of Leprosy'.
In India, this goal has not yet been achieved. Moreover, social attitudes towards persons suffering from leprosy continue to be highly prejudiced. Although the government had launched leprosy control activities in 1955, the National Leprosy Eradication Programme (NLEP) - based on the MDT strategy - was launched only in 1983, after which a significant decline in leprosy cases became visible. In 1993, the World Bank began supporting the NLEP to strengthen facilities and infrastructure.
Direct government intervention, public-private partnership and civil society organizations have all contributed to the ongoing trend of decline in leprosy incidence. Community participation and awareness is essential to ensure success. Information systems have, therefore, been simplified, and area-level leprosy awareness campaigns introduced.
T Jayakrishnan, executive secretary of Nav Jagriti Manav Samaj (NJMS) - a Tata Engineering-sponsored NGO running leprosy-reduction programs in and around Jamshedpur in Bihar - reveals, "NJMS campaigned to educate schools about the disease. Due to this, over 300 children of people suffering from leprosy were able to get admission to local schools. We set up seven ashrams to help leprosy-affected people be self-reliant, become literate and gain basic educational skills. Also, many leprosy patients kept their money under mud floors, where it rotted away or was eaten by white ants. For persons with deformities that prevent them from operating accounts themselves, we persuaded local banks to open joint accounts that can be operated by any healthy person in the family."
Jayakrishnan was personally inspired to take up this work after visiting Baba Amte's ashram, Anandvan (near Pune in Maharashtra).
In the late 1990s, Savitri Chakraborty from Singbhum district, Jharkhand, developed patches on her body. She recalls, "People stopped visiting us. My daughters could not get married. We were isolated." Paramedics from NJMS convinced Chakraborty she could be cured with regular medication. NJMS provided medicines free of cost. A year later, Chakraborty is jubilant: "I no longer suffer from the disease. My family is once again a part of the village."
Yet, information about MDT has yet to reach many people. Campaigns to generate awareness have not always been effective. Even in Delhi, ignorance and reluctance to take back a cured leprosy patient continues.
A 2005 survey by Centre for Media Studies, New Delhi, grimly notes, "Discrimination against cured patients is high in the city." Most people were unaware that the disease is fully curable, nor were they able to identify symptoms of leprosy. Most people still associate leprosy with deformation of body parts.
In fact, leprosy usually starts as a light-colored patch with loss of sensations of pain, touch or temperature. Nerves near these patches and at the joints are swollen. In most patients, the disease progresses without any deformity. In a few patients - where there is break in communication between nerves and muscles - lack of treatment could lead to lead to irreversible deformities in hands, feet and eyes.
Only for 10 per cent of patients is the disease actually infectious. After just two weeks of MDT treatment, even these cases are no longer contagious.
Leprosy has a long history of discrimination and ostracism. In fact, the term 'leper' has come to signify a person shunned by others. During the Middle Ages, it was mandatory in Europe to segregate leprosy-affected people. In India, the Lepers Act 1898 - now repealed - favored enforced segregation of leprosy patients. The social stigma continues to this day.
Kamlesh Dvyadarshi, a well-known Arya Samaji (member of the Arya Samaj, a Hindu social reform movement) based in New Delhi, contracted leprosy nearly 25 years ago. He was cured at The Leprosy Mission (TLM) hospital. TLM has offices in 22 countries and has been working in this field for the past 131 years. Dvyadarshi believes that people like himself, who have experienced the disease, should come forward and speak out in public to bring about awareness and make leprosy elimination campaigns more meaningful.
C S Walter, Director of TLM, explains that the government and NGOs will continue IEC (Information, Education and Communication) and advocacy programs around leprosy until 2006. He notes, "New cases will continue to occur and pockets of endemic still exist at a sub-national level. Cured patients with disabilities need physical, socio-economic and psychological rehabilitation."
J P Mulyil, Leprologist, Christian Medical College, Vellore adds a note of caution. While acknowledging that there has been a substantial reduction of leprosy, he is skeptical about the figures. He avers, "The goal of elimination of leprosy has to a great extent clouded the minds of many a health professional. A prevalence of 1 per 10,000 - the goal set by WHO - is sought to be reached artificially through artful manipulation of definitions of leprosy. There is much evidence to show that new cases continue to emerge in the country, and at least 10,000 new individuals become disabled annually due to the disease. All this clamor about elimination by a given date is turning out to be quite unhelpful in this context."
Sociologist Dr Renu Addlakha, who has studied the situation prevailing in rural Orissa and Madhya Pradesh, agrees: "Official figures do not reflect the complete picture. In remote districts like Malkangiri in Orissa, people are hardly receiving any information about leprosy, which NLEP claims to have spread widely."