‘Shift focus on child leprosy cases’

Only when he experienced problem with his nerves, Manoj, a 12-year-old boy, son of a labourer from near Chengelpattu, was taken by his parents to a nearby government hospital for checkup. 

The doctors told them he had leprosy. Manoj is among 5 per cent of leprosy cases that are detected, after the nerves are effected. World Health Organisation (WHO) has set goals for zero child cases by 2020. Tamil Nadu achieved the elimination status, as defined by WHO, of 1 or less than 1 case per 10,000 population in the year 2005 itself. It was the first state to integrate the leprosy services with the Primary Health Centers in September 1997. 

However, every year, new cases are being detected. There were with 3,604 new cases from Tamil Nadu in 2014-15. Dr Srinivas G, National Medical Advisor, German Leprosy and TB Relief Association-India (GLRA), says. “The situation was alarming in 80s and 90s. 

However, now the incidences have come down drastically. Although, there is elimination, there are a number of new cases detected every year, (recent number stands at 1.25,785 cases in 2015). Among them at least 11,365 are children. This is a worrying sign. Just like we take even one case of polio seriously, leprosy must continue to be tackled on a war-footing. 

Patches on any part of the body should be taken seriously. It doesn’t always indicate leprosy, but they must go for a check up to get it ruled out completely.” 

Despite the low prevalence rate, lack of awareness among the public, myths, socialcultural beliefs and the stigma and discrimination attached to leprosy, are perhaps the most pressing problem before public health activists today, says Dr. Vineeta Shanker, Executive Director, Sasakawa India Leprosy Foundation. “Leprosy has been feared for hundreds of years, due to the deformities it can bring. Even though effective treatment is available, those affected by leprosy are marginalised and suffer psychological and physical distress.  It is predominantly a disease of the poor, and those who contract leprosy are tipped from poverty into extreme poverty,” she says.  

Social stigma associated with it is a daunting challenge for organisations working in the area. “In urban areas the stigma is more,” says J Ravichandran, Chief Executive Officer of GLRA, talking about metros like Chennai. “The problem here is educated people tend to discriminate more,” he adds. 

Echoing, Ravichandran’s observation about stigma specific to urban areas, Dr M Shivakumar, Secretary, Damien Foundation India Trust, adds, “Early diagnosis and adequate treatment are essential to cure the disease and prevent disabilities. Employing Multi-Drug Therapy (MDT), a combination of drugs to kill the bacteria in the early stage can help stem out disability.”

A source from the Healthy Ministry said that though elimination target has been met, in 36 blocks, where the prevalence is still 1 in 10,000, programmes are in place for early detection, apart from providing total care for old cases, In the absence of a preventive vaccine for leprosy, the onus largely lies with the public, says Dr C Sivashankar, Additional Director Medical Services, Leprosy (retired). “The government has been playing a huge role through DPMR-Services (Disability Prevention and Medical Rehabilitation- Services) that have been strengthened. Those undergoing surgery get Rs 8,000 for wages lost during the recovery time,” he says. 

According to statistics, there are close to 50 leprosy colonies in the state and as many as 700 across India. There has been a steady decline in the number with intervention by organisations working towards offering rehabilitation. 

“Education plays a huge role in offering a new lease of life. We work on both levels — educating children of those affected by leprosy and children with leprosy,” adds Dr Shivakumar. In partnership with National Skill Development Programme (NSDC) in Tamil Nadu, Sasakawa India Leprosy Foundation’s goal is social acceptance of leprosy cured people and their families.

“Sasakawa India Leprosy Foundation has helped leprosy affected people through its livelihood program. In 2013 a group from the New Life Welfare Association, a colony in TN gave up begging to start a poultry farm,” adds Dr Vineeta.