After ‘eliminating’ leprosy,the price of letting guard down

Maharashtra’s joint director (leprosy) Pradip Gaikwad attributes the rising number of new case detections to a state survey initiated two months ago. “In the post-2005 period,we realised that nobody comes to report his case himself or herself since leprosy starts as a harmless spot that doesn’t ache. But after it turns into a deformity,they rush to hospitals,” he says. “We requested the Centre to allow us to do surveys that had stopped after 2005… We surveyed a population of about six crore in 19 most leprosy-affected district from October 2 and detected 2,000 cases.”

“The government did a good job in ‘eliminating’ leprosy,but leprosy can’t be eradicated without continued efforts,” says Uday Thakur,treasurer of Panvel’s Kustharog Nivaran Samiti and general secretary of Hind Kushtha Nivaran Sangh. “The incubation period of leprosy ranges from 1.5 to 10 years. The germs got activated in many people after 2005. And as there were no fresh surveys,we now see the cases piling again.”

Now the burden on Anandwan is 3,000 patients and expenses in excess of grants received by the institution,once regarded as a self-sufficient model village of Gandhi’s dreams. Anandwan,set up by late Baba Amte 1949,has been one of the few organisations working not just to treat leprosy patients but also empower them by training them in various skills so they don’t live as “welfare addicts” — as the Baba would call those “given to surviving on government aid”.

The Maharogi Seva Samiti that runs Anandwan requested the government to allow it to raise a Rs 55 crore corpus from donations. The government has acknowledged the need but has permitted it to raise only Rs 27.5 crore.

“The idea was to ensure an interest of about Rs 4.2 crore annually to be secure on running costs,” says Sheetal Amte,the Baba’s granddaughter who,along with elder brother Kaustubh,has taken over the reins of the organisation. “We spent Rs 1.68 crore annually on our leprosy patients in 2010-11 as against about 67 lakh that we got in government grants. We have so far been able to raise only about Rs 10 crore from donations. Collecting the remaining amount till March 2012 remains a daunting task.”

The state government has been giving Rs 15 per person per day to organisations like Anadwan. “The expense per inmate here is not less than Rs 40 per day. There is a huge gap,” Amte says.

Gaikwad acknowledges the difficulty. “We have many leprosy homes like Anandwan,Tapowan and Shantiwan that are doing yeoman service. Their grant per patient hasn’t been revised since 1997. I have proposed to the government to increase it four-fold to Rs 2,000” (per month),Gaikwad says.

Anandwan needs funds for its non-leprosy service activities too. Over the years,Anandwan has embraced not only people with leprosy but those with all kinds of disabilities and started projects for them. It has diversified into activities like dairy,water conservation,education,youth empowerment,appropriate technology and helping poor farmers from remote tribal areas of Yavatmal district improve their agriculture.

Thakur says,“The government gives aid to 40 per cent deformity only. But any leprosy patient – below or above 40 per cent – get stigmatised socially.”

Amte and Thakur stress the importance of keeping leprosy homes alive,especially in light of the fact that the government,after 2005,dismantled the vertical structure in its health machinery catering especially to leprosy patients. “There is no special arrangement to treat them in government hospitals. So,all come to us,” Amte says.