Leprosy continues to haunt India, social stigma remains

January 30, 2013 04:47 am | Updated 04:47 am IST - NEW DELHI:

Residents of the Nav Jeevan leprosy rehabilitation centre in Chatnalli in Karnataka’s of Bidar taluk. Photo: T. Gopichand

Residents of the Nav Jeevan leprosy rehabilitation centre in Chatnalli in Karnataka’s of Bidar taluk. Photo: T. Gopichand

While India celebrates its near victory over polio, another dreaded disease, leprosy, that was overpowered in 2005 continues to haunt the government. Those affected by the disease continue to face social stigma and discrimination.

In addition to the 12,305 child cases detected during the past year, 16 States and Union Territories have also shown an increase in the number of cases.

Though in 2005 leprosy was eliminated (having less than 1 patient per 10,000 population), now it has the world’s highest burden of disease, accounting for close to 58 per cent of the cases in the world. A total of 1.27 lakh new cases were detected in 2011-12 which gives an Annual New Case Detection Rate (ANCDR) of 10.35 per 100,000 population, which is marginally less than that of 10.48 in 2010-11.

Leprosy is a chronic infectious disease caused by Mycobacterium leprae . It usually affects the skin and peripheral nerves, but has a wide range of clinical manifestations. The disease is characterised by long incubation period generally 5-7 years and is classified as paucibacillary or multibacillary, depending on the bacillary load. Leprosy is a leading cause of permanent physical disability. Timely diagnosis and treatment of cases, before nerve damage occurred, is the most effective way of preventing disability due to leprosy.

1.26 lakh new cases

Of the total of 1.26 lakh new cases deleted from record, a total of 1.16 lakh completed their treatment within the specified period. However, only 69.5 per cent people were able to complete their treatment in Delhi, 66.7 per cent in Tripura, 67.7 in Meghalaya and 32.4 per cent in Himachal Pradesh

According to the latest figures released by the Ministry of Health and Family Welfare on the eve of the Anti-Leprosy Day, a total of 0.83 lakh cases are on record giving a prevalence rate of (PR) of 0.68 per 10,000 population though only 530 districts out of the 640 have achieved the elimination level. Chhattisgarh (1.69 per 10,000 population) and Dadra and Nagar Haveli (2.93 per 10,000) have the prevalence rate between 1 and 3 per 10,000. Although Bihar has reached the PR of less than 1 in 2011-12, the government is still keeping an eye over it.

“I would say leprosy is effectively cured in India with MDT (multi drug therapy) since 1985. It is not an infectious or a contagious disease any more but the stigma associated with it is unacceptable,” says P.K. Gopal, who for over four decades has championed efforts to help eradicate leprosy and to further the cause of those who are affected by this disease.

700 leprosy colonies

Dr. Gopal, International President of the International Association for Integration, Dignity and Economic Advancement (IDEA), which he helped to set up in 1994, says there are 700 leprosy colonies in the country where over 2 lakh people live marginalised lives.

“Even if they do not have the disease, merely the address of a leper colony is reason enough for disqualification for applying to a job or being denied admission in a school,” Dr. Gopal told The Hindu while citing a recent case of Bihar, where a child was denied admission merely because someone in the family had the disease.

Despite being part of a panel that is now busy preparing a new official programme for leprosy with on early detection and removal of stigma, Dr. Gopal feels that there has been some complacency in the implementation of the National Leprosy Eradication Programme launched in 1983. “There is some kind of lack of interest because the disease is believed to have gone. But there is a steady flow of new cases,” he explains.

With the introduction of MDT, India with help from the World Bank and the World Health Organisation (WHO) started providing MDT free of cost to affected people from 1993 until 2004. India took over the programme in 2005 after it pronounced that the disease was eliminated.

Reduction in funds

“There has been a huge reduction in the funds ever since leprosy was eliminated that has adversely impacted the non-governmental organisations and civil society activists working for the uplift of the leprosy-affected and cured people,” says V. Narasappa of the National Federation of Leprosy Cured People in India. “People in the rural areas do not even know MDT is available free and importantly they keep away from health facilities for fear of stigma,” says Mr. Narasappa. The burden of the disease is highest among the Scheduled Castes (18.40 per cent) and Scheduled Tribes (15.83 per cent).

Under the 11th Five Year Plan, leprosy services were being provided through the PHC with general health staff. However, a component called District Nucleus was kept at the district-level under the District Programme Officer with persons from the erstwhile vertical staff under NLEP. As against 642 districts, there are only 369 sanctioned posts of District Leprosy Officers, remaining districts are managed by the District Programme Officer, who also works for other programmes.

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