Muzaffarpur: Hobbling through the bylanes of Bihar’s Meenapur village with an aching, swollen leg, Parvati Kumari tirelessly narrates her cautionary tale of lymphatic filiariasis, commonly known as elephantiasis, as she distributes medicines door to door. After all, she herself fell prey to the disease when she was just 15, Kumari tells villagers, sharing her own story and insisting they take the medicine in front of her. The disease, the 65-year-old stresses, is irreversible but efforts can be made to curb its spread.
“I display my swollen leg, recount my struggles, and share how my family initially supported treatment but later abandoned it, citing financial constraints,” Kumari told PTI.
Holding packets of tablets in one hand and a water bottle in the other, Kumari is among the band of lymphatic filariasis (LF) patients in Bihar’s Muzaffarpur district spreading awareness about the neglected tropical disease caused by parasitic worms transmitted to humans through infected mosquitoes.
India is amongst the countries most affected by the disease with 40 per cent of the global case load. It is most prevalent in Bihar and Uttar Pradesh.
A mass drug administration (MDA) programme has been key in the strategy to control LF in the two states. The programme involves giving medicines to entire communities in areas such as Muzaffarpur where the disease is prevalent, the goal being to kill the worms in infected individuals and prevent the spread of the disease.
Having lived with the disease all her life, Kumar said she is determined to spare others from enduring the same hardship. When people hear her story, they are often motivated to accept the medicine.
“Distributing medicines and raising awareness about prevention has not only given me a sense of purpose but also empowered me. I was sidelined and neglected by society and even my own family. I spent years believing that was my fate, but this endeavour has given me a reason to live,” she expressed.
In Muzaffarpur, 568 women and 273 men are part of the Filaria Patient Network, actively participating in medicine distribution and advocating hygiene conditions to prevent acute attacks. In Gopalganj, the network comprises 721 women and 299 men.
There are 15,090 cases of lymphoedema (chronic lymphatic filariasis) in Muzaffarpur and 8,017 in Gopalganj. LF is endemic in both the areas.
When lymphatic filariasis develops into chronic conditions it leads to lymphoedema (tissue swelling) or elephantiasis (skin/tissue thickening) of limbs and hydrocele (scrotal swelling).
Khushbu Nisa, an LF patient from neighbouring Mugal Biracha village in Gopalganj, said she faces personal challenges each time she ventures out to distribute medicine.
“My family disapproves of my efforts to educate people about the importance of taking medicine. For women here, stepping out without a male companion is difficult. They question my motives, asking what I gain from educating others about her condition. Every time I leave home, I must either lie or brace myself for a fight with my family,” she shared.
Mahasina Khatun from Mugal Biracha village in Gopalganj joined the network after witnessing her mother-in-law’s battle with the disease.
In her view, providing monetary incentives to network members would help get support from their families.
“More people would also be motivated to join then,” she asserted.
According to Arvind Bharti, state government-appointed LF in-charge of Meenapur village, the network is playing a pivotal role. Earlier, the number of people receiving medication was negligible but there has been a substantial increase thanks to the efforts of the network, he said.
“The MDA programme runs twice a year, with a clinic operating every Tuesday for LF patients at the primary healthcare centre,” he said.
Akhila Sivadas, executive director at the NGO Centre for Advocacy and Research, explained that the network was formed to encourage community involvement in combating the disease.
“People without LF had doubts about the necessity and safety of medication when visited by ASHA workers. Recognising the need for a proactive approach, akin to the polio eradication initiative, we conceived the idea of involving the community directly in the mass drug administration programme, with patients leading the charge,” she explained.
CFAR is spearheading the community engagement programme on the ground with support from the Bihar Health Department.
“In UP and Bihar, 14,177 LF patients have joined the Filaria Patient Network, with women comprising 7,821 patients compared to 6,356 men. This collective effort is underway across 21 districts in UP and Bihar, and is set to expand to 17 additional districts in both states,” Sivadas stated.
The breakthrough came during a meeting of frontline workers in 2018, recalled Parmeshwar Prasad, additional director and Bihar Programme Officer of Lymphatic Filariasis.
That was when it was decided that the workers would ensure patients ingest the tablets in their presence instead of just distributing it.
“The involvement of LF patients from the same village, sharing their experiences and emphasising the importance of MDA participation, significantly boosted acceptance. Medication uptake has surged to over 90 per cent this year,” he said.
India has committed to eliminating lymphatic filariasis by 2027, three years ahead of the global target, through a collaborative and targeted approach involving multiple partners and sectors.
