Number of leprosy cases highly underestimated, fear activists

Gretnaltes director Hemachandu too believes it would make a world of difference if leprosy was dealt with with the seriousness it deserves.
Number of leprosy cases highly underestimated, fear activists

VIJAYAWADA: “Everything was okay until seven years back,” Basha recalls. It was hot and sultry outside and the young construction worker was in his elements working with a spade. He’d scoop a lump of moist cement from a container and throw it onto a wall of newly-laid bricks before flattening it out with precision. Scoop and throw. Scoop and throw.

He had left Yadlapalli, Guntur, for Hyderabad to eke out a living a couple of years back and send a part of whatever little he earned to his mother back home. He had only just started standing on his own feet and his brother’s little tea stall in their village was doing well he had heard. Things looked bright to the then 19-year-old and work was not bad. Scoop and throw. Scoop and throw. “We were on the right track. There was hope.”

That’s until his right hand began to give away. “I lost my grip and the spade went flying out of my palm,” Basha recalls. The spade hit a worker on the chest and he fell down with a gash between his ribs. The tool he knew like the back of his hand now seemed to have turned on him. Basha looked down at his palm instinctively and saw that his fingers had begun to curl. He was worried, but more about the wound on his friend’s chest.

Khaja Basha two months after his reconstructive
surgery in Morampudi | p ravindra babu

“If I had known what was happening to me, I would have sought help faster,” Basha says even as his physiotherapist Shiva Kumar explains to him the importance of post operative care. “After the accident at work, It took Basha five years and several ineffective pills prescribed by equally ineffective Registered Medical Practitioners (RMPs) to finally realise he had to visit a qualified doctor. His palm and fingers had lost all mobility by the time he realised what had happened to him,” says Kumar, who has spent the greater part of his life helping leprosy-affected persons at Gretnaltes in Morampudi near Tenali.

The institute is one of only six in Andhra Pradesh that offers free reconstructive surgery to persons who have been cured of what is probably the most feared disease. Such is the dearth of hospitals that focus on leprosy that people from several districts in Telangana too rely on Gretnaltes to mend their mangled limbs and compromised lives. Leprosy or Hansen’s Disease affects nerve endings, thereby destroying sensations of pain and injury and making the affected vulnerable to ulcers. If not treated, the disease can eat into flesh and ultimately lead to the loss of fingers, toes, hands and feet. It can also cause blindness and facial deformities so bad that affected persons face a lifetime of rejection and discrimination.
As per National Leprosy Eradication Programme (NLEP) records of 2015-16, around 1,27,334 new cases were detected in the country. Perspective? India is home to 63 per cent of the world’s total number of people affected by Hansen’s disease. 

One of the best ways to save leprosy victims from stigma is to spot the disease early and prevent deformities. “Not many come for reconstructive surgery fearing that in the period they are hospitalised, which is usually 45 days including post-operative care, their families will have no source of income, which is why the Centre has declared that for every surgery that a person attends to correct deformities caused by the disease, `8,000 would be awarded. But it has been over a year and a half since the incentives have been released by the state government,” explains Shiva Kumar. Basha agrees, “There was little to eat at home during my surgery two months back. There were times when there was no food at all.”

The construction worker says there are four others in his neighbourhood who have similarly deformed hands and white spots on their body – the numb light-coloured patches are the first sign of the debilitating disease. “None of them want to get reconstructive surgery done because they fear they may have to stop working for the period. I show them my operated hand and tell them how it brought me back to life,” says the 27-year-old who spent several years in isolation because of his deformity. 
“I don’t want anyone to suffer like I did, but they don’t listen to me,” he says. “Mainly because they do not know that this disease can ultimately lead to terrible deformities and a life of isolation. And also in the absence or delay of the monetary aid during surgery, families go hungry.”

When contacted, State Leprosy Officer Dr Rajendra Prasad told TNIE that there was no chance of a delay. “The funds for incentives have already been disbursed to district-level officers who in turn hand it over to institutions conducting reconstructive surgeries. Then how can there be a delay?” However, a word with Guntur District Leprosy Officer and Additional DMHO (AIDS & leprosy in charge) Dr J Sarsijakshi revealed that all she had received since last March was funds enough to cover not more than eight persons.

In 2005, when the overall rate of leprosy in the country was reduced to less than 1 in 10,000 as per the target set by the World Health Organisation, the disease was ’eliminated’ as a public health issue and funds dedicated for fighting the infection were channelled to the general health system. Donations dipped, so did awareness campaigns. An activist who has been working for the upliftment of ostracised leprosy affected persons for over 20 years admitted that NLEP figures were grossly underestimated. “I don’t want to be named because I am sure the organisation I work for will lose the little funds it gets as incentives for its patients undergoing reconstructive surgery if I spill the beans.”

In the mad rush to meet elimination status, government staffers deliberately avoid registering all the cases that they come across, he says. “If the white patches on the skin of patients is not more than the size of a coin, they are given medicines and sent off. They never make it to the books. And in certain cases if the medication period is completed before the financial year, their details are not put into the records,” the source who has worked across the state says.

Gretnaltes director Hemachandu too believes it would make a world of difference if leprosy was dealt with with the seriousness it deserves. After the elimination of Hansen’s Disease as a public health issue, door-to-door campaigns to spread awareness on the infection were banned. The Leprosy Case Detection Campaign, an effort to spot hidden cases, was carried out only in select  districts – Vizianagaram, Srikakulam, Kurnool, Anantapur and Nellore – from 10 and 24 November, ignoring districts including Guntur despite localities such as Basha’s having several people showing symptoms of the disease, but being painfully unaware of how debilitating the infection can be.

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