How Women in UP Confront A Neglected Disease–And Stigma

Adjacent to her house is a shack turned into a small kirana (grocery store). Her neighbours have stopped buying from the family’s shop. Their fear is that if they touch her, they too will get what she is suffering from. Everyone in the neighbourhood suspected that the swelling and abscess in her leg was ‘kodhiya rog’ (leprosy).

“Kisi ne filaria ka naam tak nahi suna tha (no one had ever heard of filariasis),” she says, gesturing to her right foot. Commonly known as ‘hathi pao’ or elephantiasis in its advanced stages, lymphatic filariasis (LF) is a mosquito-borne parasitic disease that has been endemic to India since antiquity. The disease is a visible marker of ‘shame’, as it can cause extreme and unsightly swelling in the limbs, genitals, or breasts, referred to as lymphoedema.

As per the World Health Organization (WHO), 62% of the 657 million people requiring preventive drugs for LF reside in India. The disease, while entirely preventable, becomes incurable upon progression and remains the second leading cause of physical disability worldwide.

Latest data from the National Centre for Vector Borne Disease Control (NCVBDC) reveal that of India’s 345 districts where the disease is endemic, 51 are located in Uttar Pradesh (UP).

The state, India’s most populous, reports a high lymphoedema case burden of 15% of all reported cases countrywide, and an even higher hydrocele case burden of 19%. There were 621,178 reported cases of lymphoedema in India in 2023, alongside 127,100 cases of hydrocele, as per official data cited by the NCVBDC.

Gendered suffering: A misinformed struggle for treatment

“‘The cost of being a woman is pain,’ said the doctor at a government hospital while jabbing me with a pain injection,” Manorama recalls with a bitter laugh. Her LF symptoms started with a swelling that appeared 15 years ago and spread to her entire leg, turning it red. Fevers, headaches, and vomiting followed.

Desperate for relief, she visited countless babas, public and private hospitals in Lucknow and Sitapur, and even a doctor in Nepal. One such healer, armed with a lemon and feathers, asked Manorama to prick her swollen limb with a needle. The wound caused a bacterial infection and oozed pus for days. Such ineffective ‘cures’ continued for nine years.

Currently, there is no drug available to treat patients or carriers with large worms in their lymphatic system, which damages it and leads to long-term morbidity, explains Shikha Malik, senior manager, Scientific Affairs (R&D) at Drugs for Neglected Diseases initiative (DNDi), a global non-profit organisation that develops and delivers treatments for neglected diseases.

L: An open drain in front of Manorama’s house forms the perfect breeding ground for mosquitoes. R: An ASHA worker's message on the wall reads, “Put waste into the waste bin, sleep under the mosquito net.”

Around 13 km from Madaripur, a kutcha road with rain-swollen open drains leads to Bitto Devi’s house. Now 40, she was a mother of four when her leg first swelled over 16 years ago, hampering her daily tasks.

Like others in her village Sadhamau, she attempted local remedies to no avail. Bitto Devi’s limb pain forced her to quit working as a farm labourer, leaving her husband as the family’s sole earner. “I couldn’t sit or squat in the fields. Everything hurt. Who will cook? Who will feed my kids?”

A group of women and children passed by us, heading to the nearby field with water containers. Open defecation, Bitto Devi explains, increases the risk of mosquito bites, particularly for women who set out only around dusk for the sake of privacy. She says the nearby talab (pond) makes it difficult to control mosquitoes, especially during monsoons.

LF disproportionately affects marginalised communities due to poverty and improper sanitation, with women being highly susceptible due to their daily chores, both at home and in the fields, as these sites with filthy, stagnant pools of water provide mosquitoes the perfect habitat to breed and proliferate.

Bitto Devi, 40, from Sadhamau, shows the scars around her lymphoedema, worsened by years of local treatments. Her legs would ache and swell from a day spent squatting in the fields, eventually forcing her to quit work as a farm labourer.

Among the dozen women filaria patients we spoke to for this story, two experiences were common: Their pain was consistently dismissed, both within their homes and in medical settings, and they noticed far more women in their vicinity suffering from “heavy feet” who rarely sought medical attention. The need for research into the gendered outcomes of LF is evident, to document the disproportionate healthcare barriers and social isolation faced by women.

“Women in rural India display diminished health-seeking behaviour, as they require the husband’s or family’s consent for treatment,” explains Bhupendra Tripathi, country lead, Neglected Tropical Diseases (NTD) Elimination, Bill and Melinda Gates Foundation (BMGF). “Since the problem (LF) is lifelong, the confidence to seek help reduces with each painful episode.”

Data from India’s National Family Health Survey 2019-21 (NFHS-5) reveal that 15.5% of rural women in India struggle to get permission for medical treatment compared to 9.4% in urban areas, while 24.7% of rural women struggle to get money for treatment versus 14.4% in urban areas.

Akhila Sivadas, executive director at the Centre for Advocacy & Research (CFAR), says that in the case of women, most complications caused by filariasis are unseen, as it robs the patient of mobility, dignity and agency in many aspects of their daily lives. The non-profit works towards improving community engagement in the LF programme and helps coordinate activities of the filaria patient network. “A shroud of cultural silence stigmatises and ostracises patients, or labels them as manhoos (cursed).” Sivadas notes that women are prone to more frequent misdiagnosis or indifference from healthcare providers.

Not just a patient or caregiver: Stakeholders in community outreach

In 2022 Manorama, fearing infection, warned the ASHA and CFAR coordinator at her doorstep, “Don’t touch my leg, you’ll get it,” when they urged her to seek treatment for LF at the community health centre.

Today, Manorama leads the Shri Gurukripa Filaria Eradication Committee, a patient support group in Madaripur, and is the one doing the advocacy. “Anyone I talk to, my eyes first fall on their feet.” So far, she has connected six patients to the network, helping address their fears and misconceptions around managing pain and arresting the progression of LF through daily hygiene practices and exercises, referred to as the Morbidity Management and Disability Prevention (MMDP) training for patients.

The Ministry of Health and Family Welfare’s current approach to LF elimination primarily relies on annual mass drug administration (MDA) campaigns in India’s high-burden districts including UP’s Lucknow and Kanpur, where community health workers administer door-to-door preventive medicines to curb the transmission of infection. MDA follows the Triple Drug therapy composed of IDA (ivermectin, diethylcarbamazine citrate (DEC), albendazole) or the Double Drug dose composed of DEC and albendazole.

For a disease with an extremely low threat perception, where the onset of symptoms can take over a decade to show, convincing healthy people to take the medicine every year is challenging.

“Tumka hai, tum khao! (You have it, you take the medicine)”--this was the most common response when Bitto Devi went from house to house along with ASHA bahus in the previous year’s MDA rounds. Her neighbour Ramkali (she uses one name), like many, refused to take the medicine, despite being diagnosed with LF.

Bitto Devi, part of the Filaria Patient Network for three years, feels some relief as many villagers, including her children, now take the preventive drugs. "Even if bitten, the worms will die, and the spread can be stopped," she says. Bitto Devi regularly practises circular foot movements to reduce swelling--a technique she picked up during her time in the network.

In Uttar Pradesh and Bihar, 16,382 patients across 21 districts are part of the Filaria Patient Network. Of these, 9,856 are women and 6,526 are men, according to data provided to IndiaSpend by CFAR, which coordinates the patient network’s activities in these states.

“Ideally, all health workers should be trained to manage lymphoedema, but they are not,” said Tripathi of the BMGF, discussing the necessity of a community-led approach. “Patients are looking for answers, and to be reassured”--a responsibility that women like Bitto Devi and Manorama now shoulder, armed with confidence and green parchas (information leaflets).

Manorama sits beside her family, all of whom, aged between 3-72 years, have completed their dose of preventive medicines as part of the MDA round conducted in Lucknow in February 2024.

Manorama has mastered the art of persuasion. Some men considered the medicines a ploy to stop their alcoholism. “Bhaiya, nothing will happen. You can still drink the quarter you take every night,” she assures them. She makes follow-up visits to check for side effects. Some refuse the medicine, unwilling to waste the paan masala in their mouths. She offered paan packets from her shop, saying, “Spit it out and take the medicine,” while kids would settle for toffees.

Low MDA compliance stems from a lack of behaviourally-informed interventions around how the community perceives the free drug administration. A person’s experience of benefit and harm (adverse side effects) and suspicions from previous mass health programmes can influence participation. A global study published in February 2022 mapped that when an MDA becomes coercive, communities could appear to comply publicly, but privately reject treatment.

Rajeshwari Devi, 49, has been an ASHA worker since 2006. She has contributed to elimination programmes for several diseases including LF, leprosy, and tuberculosis. She finds LF particularly tricky, as many patients hide their illness, and she believes that more health department staff should accompany ASHAs to boost medicine uptake.

In 2023, Rajeshwari Devi was elected from Sadhamau in Bakshi Ka Talab as the sabhasad (ward councillor) in the Nagar Panchayat elections, signalling better political backing for the community’s health concerns.

Rajeshwari Devi, the ward councillor of Sadhamau, with her husband Rohit Kumar, holding a pamphlet from her election campaign. She contested as an independent candidate, with the election symbol of ‘a farmer sifting grains’.

“Women trust us (ASHAs) more. Whether young or old, married or not, once introduced to the health system, they are more likely to stay connected and bring in more patients,” explains Rajeshwari Devi. She has been receiving more requests for fogging measures and clearing of stagnant water pools.

Kalyanpur: A closer reality of the MDA effort

A group of patients gather in a circle on the bright green porch of the ration vitaran kendra (fair-price shop), located in Bhisar village of Kalyanpur in Kanpur Nagar district.

Of Bhisar’s 1,146 residents, as per its last family survey, 22 LF cases have been identified, according to Munni Devi, the village’s sole ASHA worker. “Nobody talked about filaria until recently,” she said. “All the work was done only on paper, especially around medicine consumption.” Meanwhile, those waiting in line at the ration kendra appeared indifferent, focused solely on collecting their rations. When asked about the patient network or the disease, many were unaware of the patient network or its meetings and showed little interest in the discussion.

Ration Distribution Centre in Bhisar village, Kalyanpur where patients meet.

Munni Devi now follows a strict "dhava bol" (to attack into action) approach, asking villagers to take the medicine in front of the ASHA, with photos or videos documenting the process. “This method has now been mandated as part of our MDA guidelines to reduce the risk of misuse and wastage," explains A.K. Singh, District Malaria Officer of Kanpur Nagar, as many previously took the medicine without actually consuming it.

Alok Ranjan, Chief Medical Officer of Kanpur Nagar, notes that the community was cooperating in the district’s annual MDA campaign. “Acceptability is of the utmost importance and is very much desired. The triple-drug regimen is proving more effective than the previous two-drug therapy,” he says, expressing confidence in meeting the national LF elimination target set by the Union government for 2027.

As per data accessed by IndiaSpend from the District Malaria Officer’s office in Kanpur Nagar, in Kalyanpur block, 75,285 of the 216,590 population had received the preventive drugs as of August 21, with the campaign continuing until September 2, 2024. By August 21, 33.7% (1.2 million people) of Kanpur Nagar’s 3.7 million residents had consumed the IDA medicines.

Munni Devi, the sole ASHA in Bhisar village, shows the photo of a village resident consuming the preventive medicines as part of the August 2024 MDA round in Kanpur.

Of the gathered patients, Mahendra Singh, 60, has a visibly swollen foot and admits to drinking alcohol despite a doctor's advice to stop for proper treatment of his lymphoedema. Married at 16, Mahendra claims he doesn't feel any pain, while his wife, Uma Singh, quietly reveals how he also suffers from “latakne wali” (scrotal hydrocele) that has swollen over seven times its normal size.

Uma, his primary caregiver, recalls his acute episodes of fever, medically referred to as ‘adenolymphangitis’. She forced him to take preventive medicines last year and attends patient meetings on his behalf, while Mahendra laughs off the seriousness of his condition stating, “I’m not a doctor, so I don’t know what caused this (LF).”

Free-of-cost surgeries are to be made available for hydrocele patients at government health facilities, as per the Ministry of Health and Family Welfare’s Accelerated Plan for LF Elimination. Munni Devi explains that no hydrocele patient in Bhisar has come forward for surgery till date.

An ethnographic study from April 2009 in Odisha, a highly endemic region, documented the deep-rooted shame felt by hydrocele patients and their struggle to find brides due to sexual disability in their conjugal lives, an inability to work or even to walk properly. A study in rural West Bengal mapped how LF-affected women are often seen as less capable of working or caring for families, significantly lowering marriage prospects in endemic areas for both patients and their children.

Mahendra Singh, 60, says he feels no pain in his lymphoedema. His wife, Uma reveals he suffers from “latakne wali” (scrotal hydrocele) and regular acute attack fevers.

In Kanpur Nagar’s Hardev Singh ka Purwa, Akanksha Gautam, a 19-year-old student aspires to join the Indian Navy. When Akanksha’s diagnosis was confirmed, her father blamed her mother, Rekha Gautam, 48, who too is an LF patient, with hydrocele in her breast.

A mother of five, Rekha first noticed the lump in her right arm 22 years ago when pregnant with her eldest son. A doctor in Chakarpur prescribed painkillers but left it otherwise untreated. The swelling prevented her from breastfeeding her infant for months, as she later developed hydrocele.

“My mother-in-law was cooperative, or I don’t know what my fate would have been,” she says. “Those more intelligent than us did take the medicine,” says Rekha, her eyes hollow with over two decades of guilt and isolation. ‘You gave our daughter the disease, my sons are fine because they have my genes,’ she quotes her husband.

Now part of the patient network, her daughter Akanksha passed the written Agniveer recruitment exam, although running distances as part of the physical test triggers her leg pain.

Women with LF endure severe psychological distress, with everyday tasks like cooking, menstruating, or using an Indian toilet becoming painful experiences, explains Rajshree Das, senior director, NTD Programs at PCI India, a support partner to NVBDCP for social mobilisation in NTD elimination. "The spousal relationship suffers from routine taunts or in extreme cases, from domestic violence."

Akanksha Gautam (R) and her mother, Rekha Gautam (L). Akanksha shares how she exercises regularly and cleans her affected limb twice a day. CMO Office, Kanpur Nagar

The psychosocial burden of mental illness associated with NTDs remains uncalculated, although chilling accounts have been recorded in several studies. In a study led by the Vector Control Research Centre, Puducherry, a young grade-4 lymphoedema patient said, ‘My husband and in-laws hate me now. They say I ruined their lives. I always think of committing suicide.’ The findings assert the need for broadening the scope of MMDP programmes in India to include counselling and rehabilitation to manage the physical and social disabilities caused by LF.

Where does UP stand?

The WHO/NVBDCP guidelines report that consistent MDA coverage--reaching 65% of the total population or 85% of the target population for five consecutive years--can bring microfilariae (the parasite that causes LF) levels below 1%, eventually leading to disease elimination. Currently, 138 districts in India have stopped MDA activities after passing the Transmission Assessment Survey (TAS), indicating LF transmission to safe levels. Till 2024, only a single district in UP, Rampur, managed to clear all three TAS stages.

Researchers at the Regional Office of Health and Family Welfare, NVBDCP (Lucknow) and the NVBDCP Directorate, identified several gaps in UP’s MDA approach in an article published in the Journal of Communicable Diseases in October 2020, including lack of “quality training of drug administrators and supervisors”, an intrinsic pillar of any successful campaign.

The study found several irregularities in filariasis testing, including night blood surveys being conducted during the day, improper slide staining, and the use of artificial colours instead of human blood. The study noted oversight to be “completely lacking at peripheral grass root level”, attributing blame to the supervisory tier responsible for monitoring the drug administrator.

A similar study in 2023 clarified that drug administrators such as ASHA and Anganwadi workers cannot be held accountable for these irregularities, since the only possible penalty was non-payment of their honorarium which, in any case, was unpaid in many areas. The study revealed low community acceptance of the LF programme, stemming from insufficient information, education, and communication (IEC) activities, which should ideally occur throughout the year rather than being limited to the MDA schedule.

In a recent boost of media attention around LF from the Union Health Ministry, the Yogi Adityanath government announced plans to eliminate filariasis in Uttar Pradesh by 2026, one year earlier than the national elimination target of 2027. “No priority was ever given to this disease or its patients,” said Sudesh Kumar, state entomologist at NVBDCP, UP. Optimistic about UP’s progress against LF, he said, "We’ve partnered with the community through Anganwadi workers, gram pradhans, schools, and kotedars [ration dealers]. We will achieve the 2027 target.”

To address the gaps in effective control of mosquito-borne diseases (like dengue, malaria, chikungunya, kala-azar and brain fever), the UP government has started a Sanchari Rog Niyantran Abhiyan (communicable disease control campaign) where health workers go door-to-door (Dastak Abhiyan) to create awareness, hold camps and rallies advocating cleanliness and ways for prevention of vector-borne diseases.

Malik of DNDi emphasised the need for development of macrofilaricidal/curative drugs to mop up residual foci (areas where the infection persists after an MDA) after disease transmission has been reduced by the MDA programme. “There is an urgent need for simple diagnostics for LF elimination that are adapted to regional differences,” said Malik.

“When I go to the fields to pluck vegetables, I still tie a plastic bag around my legs and apply mosquito-repellent oil,” says Manorama. Despite being a crucial pillar of awareness within her community, she continues her precautionary gesture: even if futile, it is born out of fear and habit. With currently no cure or vaccine, Manorama and her fellow patients can only manage the progression of LF.

A deep-rooted systemic mistrust and misconceptions around the disease remain to be confronted, to improve community participation and compliance. A painfully slow charge led by women, both health workers and patients like Manorama in many pockets of the country, are part of the national campaign to eliminate LF as a public health threat.

"The mosquito doesn’t care whether you’re a man or woman, everyone suffers.” Manorama declares: “Like polio, filariasis has to be eradicated from the soil of the country."

This is the first of a two-part series on the threat of lymphatic filariasis. Reporting for this story was supported by the MSF-DNDi Grant on Neglected Tropical Diseases as part of the Without Borders Media Fellowship. The fellowship encourages independent, impartial and neutral reporting on health and humanitarian crises.

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