VIJAYAWADA: The keeper of ivermectin pills in Krishna district’s sole Filaria Control Unit is a blind man. “And he’s two very long flights of stairs away,” says Radhamma (name changed).The fifty-year-old, whose severely swollen leg has been restricting her mobility ever since she contracted elephantiasis tropica or lymphatic filariasis (LF) in her youth, says she has no option but to go to the unit in Nuzvid herself. The vector-borne disease, which can cause severe swelling in the legs and arms, can have a crippling effect on the affected, not just physically but also socially, thanks to the stigma attached to it.
The unit is housed in one of the rooms on the second floor of the chalk factory that stands bang in the middle of a fish market near the Nuzvid Municipal Complex. And the air around — saturated with chalk powder and the smell of raw fish — is beyond suffocating.
Radhamma’s bad foot won’t let her walk up the stairs. So she crawls.
“What takes a normal person a few seconds is a gruelling ordeal that may take up to half an hour for people like me, yet the government refuses to categorise us as disabled or give us disability pension,” she says.
Asked about her plight, Rahmatullah, the blind field worker manning the unit five days a week, replies he goes down with the pills if patients aren’t able to climb up the stairs. Radhamma is quick to dismiss the claim with the flick of a hand. “Rahmatulah himself is an invalid. He does not help, neither do I expect him to,” she says. “Even if I manage to crawl up to the unit, I run out of breath as there isn’t even a fan in the room.” TNIE has verified that the unit, on which patients from certain parts of Guntur and Khammam too are dependent, has no supply of power.
“And there are days when I crawl all the way up only to be sent back with a handful of paracetamol pills,” Radhamma complains. “Even the only filaria unit in Krishna doesn’t keep enough stock of ivermectin pills.”
According to a research conducted in 2005, India is home to 42 per cent of the world’s LF affected persons. Though the disease can lead to chronic deformities, those affected are not allowed the rights afforded under the Disabilities Act 2016.
The National Vector-borne Disease Control Programme has identified 10 of AP’s 13 districts as LF endemic. A mass drug administration programme was conducted in the states between 2011 and 2015 to prevent the spread of the disease. When its occurrence was reduced to 1 in 1 lakh persons, the number of MDA programmes reduced drastically, but a door-to-door survey conducted by NGO Lepra Society in 17 mandals indicates that the figures are much higher now.
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A group of people, mostly women including Radhamma, gather at 70-year-old Moti Bi’s house not 2 km away from the unit. “Have you heard that the Telangana government has announced disability pensions for persons suffering from elephantiasis?” gushes G Venkanna, the mandal-level president of Nuzvid’s filaria support group.
“We’re hopeful that Chandrababu’s (Chief Minister N Chandrababu Naidu) government will take notice of our plight and announce pensions for us too,” Moti Bi hopes.
Those gathered at the matriarch’s house discuss whom they should approach next. ”We requested the District Revenue Officer to speak to higher authorities about granting us pensions two years back, but nothing concrete has been done so far,” rues Venkanna.
RDO Rangaiah could not be reached despite repeated efforts.
“We have also discussed the matter at an event in the presence of the DMO,” Lepra Society coordinator Radhika Mamidi told TNIE. When contacted DMO Adinaraya said it would be appreciable on the part of the government to take steps to introduce pensions for persons affected by filariasis, “but the decision is the Health Minister’s to take”. Health Minister Kamineni Srinivas could not be reached despite repeated attempts.
Venkanna said he hoped the government would resume its prevention activities with vigour, focus on morbidity management and take a leaf out of the Telangana government’s book, a sentiment shared by several filaria affected persons TNIE spoke to across the state.
Adi Lakshmi from Guntupalli in Prakasam district, too, shares the hope. “I have been partially immobilised ever since I contracted the disease when I was 10,” she recalls. “Back then my father would sacrifice a rooster at the village temple believing that it would cure his bright daughter,” the now 50-year-old reminisces.
“People in the interiors still resort to absurd rituals to treat those whose lives have been hit by filaria. This shouldn’t be the case. The government should spread awareness on self-care steps that can check swelling (of limbs due to the disease),” she says, dejected by the dearth in morbidity management camps conducted in the state.
“Elephantiasis shouldn’t be the end of the world. There’s a life beyond it. A pension of Rs1,500 may not sound like much, but for us it can be life changing,” she says. “With a little bit of government help, we can lead almost normal lives.”
Telangana govt announces pension
The Telangana government last month announced that it would pay a pension of `1,000 to filaria patients per month. Over 47,000 persons from across the state stand to benefit from the move. The AP govt has, so far, not responded to requests for pension.