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Keep counting… one, two, three… every time you can feel the tamboos (needle),” says Fatima Sadavarte as she uses a plastic needle to gently tap Balu Khandve’s left hand, all the way down from his upper arm to his fingers. Balu, 45, counts up to six. Fatima, 55, a leprosy technician, now instructs health worker Ram Bhasme to cover Balu’s eyes. “Now, count again and tell me how many times can you feel the tamboos on your skin,” she tells Balu, who shuffles uneasily. “Madam, three times,” he answers.
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Fatima had known it from the patches on Balu’s skin, but now the needle test had confirmed it — he has leprosy. Balu senses it’s not alright and flops down on the floor of his hut. The health workers with Fatima tell Balu all about “kusht rog (leprosy)”. They point to the pale skin on his arm and assure him he will be cured within a year if he is regular with his medicines.
It’s 10.30 am and Fatima and her team are in Dhamani, a tribal village in Panvel tehsil of Maharashtra’s Raigad district, for the final round of a special, nationwide drive conducted by the Union Ministry of Health and Family Welfare to detect ‘hidden’ leprosy cases. Hidden cases are those that go unreported, mainly due to the fear and stigma associated with the disease.
India is home to 60 per cent of the world’s patients. In the first round, held over 20 days between September 14 and October 4, over two lakh volunteers fanned out across the country, screened around 32 crore people and detected at least 20,000 hidden cases. In Maharashtra, the campaign detected as many as 95,000 suspect cases. Of these, say officials, 2,541 cases have been confirmed so far and they fear the number could go up to 7,000. Though the programme has ended for now, an intensified campaign was held between October 17 and 22 to ensure no one had been left out.
During the earlier round in Dhamani, health workers had identified two suspected cases of leprosy — of Balu and a 17-year-old girl — and today, Fatima and her team are visiting them for another check before they can officially be classified as ‘leprosy cases’.
With 35 years of experience, Fatima quickly confirms that Balu has the disease. She takes a cotton swab and dabs it on one of the patches on Balu’s skin and holds it down for a while — “see, the cotton has come out clean, which means there is no sweat in that area”, she says. It’s a sign of leprosy. “He doesn’t need a thermal test (using test tubes with hot and cold water to test for perception of pain or touch),” she says and one of the health workers makes a note.
With Fatima today are health workers Darshana Bhasma and her husband Ram, and ‘auxillary nursing midwife’ Ashwini Mahadik and ‘lady health visitor’ Jyoti Jagnade of the Nere health centre, 12 km away. Today, Dr Sachin Jadhav, a medical officer at Wawoshi primary health centre in Raigad, who holds additional charge as assistant director (leprosy) in this district, has decided to pay the team a visit, leaving them a little flustered.
Ashwini and Jyoti roll out charts in Marathi and explain to Balu that he can continue working as long as he takes his medicines. Balu earns a meagre Rs 15,000 a year while the other members in his house — an ailing father, a visually challenged mother, his wife and child, a brother and his wife — supplement the family income by selling vegetables or taking up odd jobs at construction firms. Balu has had the patches for a while but says he did not go to a doctor “because there was no pain”.
Jadhav reassures an overwhelmed Balu that he will now get his medicines for a year. He then instructs G S Patil, a multi-purpose worker, to advise Balu on the do’s and don’ts — “make sure you take your medicines on time and yes… no smoking, no drinking, no chewing tobacco. Is that clear?”
Fatima looks at her list and asks Darshana, an accredited social health activist, “How many of these people on the list need to be visited?” Darshana and her husband Ram were part of the team that conducted the first round of the programme, a door-to-door survey from September 14 to October 4.
Of the 70 households in the village, some need to be revisited and today, the team hopes to cover some of that.
“This is the final leg of the survey and we have to ensure that not a single person has been left out,” Dr Jadhav instructs the team.
The main path in Dhamani is lined with a row of brick and mud houses. From here, smaller lanes lead to even smaller houses. Most of the men work as construction labourers in Panvel, 20 km away, and leave for work early in the morning. So now, the village has only women, their children and the older folk. During the first round of the programme, the health workers had to begin their day at 7.30 am to make sure they met the men. The team would wind up at 11 am and then come back in the evening when the men would return from work.
It’s now 11 am and the team decides to visit some of the houses where they couldn’t complete their survey — since the team’s mandate is to physically examine every member in a village, the survey isn’t complete until they have ensured that.
As the team walks around the village, Darshana points at the houses and says, “We were taught how to mark the houses we visited. See, those with the ‘L’ sign – that means all members of the family have been checked. And those with the ‘X’ sign means we will have to re-visit them because some members have been left out.” Darshana says they only have about three such ‘X’ homes.
The team arrives at a house in one of the inner lanes and Darshana calls out to Nani Khandve. Her house had been marked with an ‘X’ during their last round. The door opens and Darshana asks for Nani’s husband, but she tells them to come in the evening. Her husband, a labourer, is away at work in Panvel, says Nani.
Before the first round, Darshana had undergone a day-long training to identify people with leprosy. She had to examine the hands, legs and backs of people for skin lesions. During her door-to-door visits, she had shown people charts on the disease and explained that those with leprosy experience “sensory nerve damage” and do not feel any pain, that they are vulnerable to cuts and other skin injuries. “We also asked them if they had any infection in the past, their medical history and whether they had lost hair on their eyebrows,” says Darshana.
Apart from the cash incentive for the survey, Darshana and Ram are paid Rs 800 for reporting a ‘suspected patient’ — someone with “multiple hypo-pigmented” or reddish patches on the skin. Ram volunteered for the survey to examine the male members.
At 12.30 pm, the team decides to go to Avshewadi, a hamlet that is a 20-minute walk from Dhamani, to look at the other ‘suspected case’ — a 17-year-old who lives with her mother.
“My parents were treated for leprosy. My father died last year,” says the 17-year-old who dropped out after her Class 5. During the September survey, Darshana and Ram had detected a few patches on her hand. They had alerted officials at the Dhamani health sub-centre and a skin biopsy sample had been sent to MGM hospital in Mumbai.
The girl had tested positive for multibacillary leprosy and was started on multi-drug therapy. “I don’t go to school but help my mother collect firewood and sell vegetables,” she says as her mother looks on curiously. “The patches on her skin have now darkened. My daughter is alright,” the mother insists.
The team continues to enquire about the girl’s health and asks her to stick to her medicines.
It’s now 2 pm and the team decides to call it a day. They will soon come back to make sure there are no more houses marked X. “The survey may have ended in Maharashtra but I have to stay alert. We can’t rest till leprosy is eliminated,” Darshana says, shutting her file. She will be back at 7 pm for another round of the village — “Nani’s husband has to be checked.”