Somwari Baskey was eight years previous when the primary seizure struck her in yr 2004. She nonetheless remembers the unsettling emotion in her mom’s eyes, the whispers that adopted within the neighbourhood, and the gradual closing of doorways for varsity, buddies and a standard life. In her village in Jharkhand’s East Singhbhum, epilepsy was not a medical situation; it was a social stigma.
For greater than a decade, Baskey was handled with herbs and residential cures – not sufficient to tame the seizures. She dropped out of college after Class 8 and stayed largely indoors, ready for the following fall, the following blackout. Then, one high-quality day in 2025, somebody from the federal government’s ASHA (Accredited Social Well being Activist) programme knocked on her door and requested a easy query: “Have you ever heard of Undertaking Ullas?”
That knock would quietly change not simply Baskey’s life, however the destiny of thousand others throughout this forested, tribal district in Jharkhand. Till just lately, epilepsy right here existed largely within the shadows. Earlier than the launch of Ullas in Could 2025 official data confirmed simply 123 registered sufferers in a district of over 2.2 million individuals, not as a result of epilepsy was uncommon, however as a result of it was invisible. Docs estimate that greater than 95% of individuals with epilepsy had been untreated. Many didn’t even know their situation had a reputation. Others feared being labelled, prevented hospitals, or just couldn’t afford lifelong medicines. Some died silently.What made East Singhbhum’s disaster uncommon was not the dimensions of epilepsy, however the scale of neglect. District estimates counsel the therapy hole exceeded 95%, mirroring situations seen in India’s most under-served tribal belts. Nationwide research place epilepsy prevalence round 7 per 1,000 individuals, which means a district of this dimension ought to have had practically 10,000 sufferers, most of them invisible to the well being system.
In accordance to the World Well being Group (WHO), epilepsy impacts practically 50 million individuals worldwide, making it probably the most frequent neurological problems globally. WHO estimates that just about 80% of individuals with epilepsy reside in low- and middle-income international locations, the place entry to prognosis and therapy stays restricted. Whereas the situation can have an effect on individuals of all ages, research present that shut to 60% of sufferers expertise onset earlier than the age of 20. India carries one of many largest nationwide burdens, accounting for an estimated 15%–20% of the worldwide epilepsy caseload, highlighting the disproportionate affect of the illness on youthful populations and creating economies.
A completely different strategy
Karn Satyarthi, deputy commissioner of East Singhbhum, tells ETHealthworld, “Epilepsy is a neurological dysfunction, however the majority of the caseload is present in creating and underdeveloped international locations. This requires a radically completely different strategy.”
Conceived final yr beneath the management of the East Singhbhum district administration and in collaboration with AIIMS New Delhi, Undertaking Ullas was designed as an entire care pathway ranging from community-level screening and prognosis to free medicines, common follow-ups and social reintegration. Its said purpose was blunt and unusually bold for a district programme: “Zero deaths from treatable epilepsy.”
For Satyarthi, that meant transferring epilepsy out of specialist clinics and into the guts of public well being supply. “Our strategy is basically completely different as a result of we’ve got tried to resolve the issue from a public well being angle quite than treating it as one other scientific challenge. Undertaking Ullas might be the primary such complete effort within the nation. Coaching, capability constructing, prognosis and aggressive follow-up are key to our success, and we purpose to scale back deaths from treatable epilepsy to zero inside a yr,” Satyarthi provides.
In only one yr, the programme has introduced greater than 2,500 epilepsy sufferers into steady therapy and reached over 21,000 individuals by way of screening and consciousness campaigns, sharply narrowing a therapy hole that had lengthy gone unnoticed. The outcomes converse for themselves: practically 9 out of 10 sufferers expertise fewer seizures, epilepsy-related deaths have dropped by 83 p.c, and each sufferers and their households report important positive factors in high quality of life and group acceptance.
Explaining why epilepsy stays so extensively untreated regardless of being manageable, Dr Mamta Bhushan Singh, professor of neurology at AIIMS New Delhi and the scientific lead of Undertaking Ullas, says the issue shouldn’t be medical complexity however misinformation. “Greater than 70% of epilepsy sufferers may be handled with easy, generally obtainable medicines. These sufferers by no means obtained therapy due to the idea that epilepsy all the time wants a specialist physician,” she tells ETHealthworld.
“Seizures have one of many easiest and most inexpensive therapies. The medicines often price simply INR300-INR500 a month. As soon as docs and well being staff on the floor stage are correctly educated, specialists aren’t wanted for almost all of instances. Solely about 25%–30% of sufferers require superior care and referrals. The actual problem is closing the therapy hole, which remains to be over 95% in states like Uttar Pradesh and Bihar,” Singh explains.
Undertaking Ullas was set out to do one thing radical in its simplicity: discover individuals with epilepsy, deal with them free of charge, observe them up recurrently and produce them again into the mainstream with out disgrace. No grand bulletins, no flashy campaigns. Simply regular work, village by village, clinic by clinic.
The primary process was to discover sufferers who had by no means been counted. ASHA staff, Sahiyas and group well being officers started asking questions throughout routine visits. Faculty lecturers had been educated to spot signs. Well being camps reached deep into tribal blocks. Slowly, numbers that had stayed buried for years started to floor. Inside a yr, registered epilepsy sufferers jumped from 123 to over 2,500. What as soon as appeared like a uncommon illness was out of the blue seen in every single place.
However discovering sufferers was solely half the battle.
The digital engine
Epilepsy shouldn’t be cured by a one-time go to. It wants common medicines, cautious dosage and follow-ups that don’t break. For households incomes day by day wages, lacking work for hospital journeys or shopping for month-to-month medication was typically inconceivable. Undertaking Ullas tackled this head-on by establishing greater than 100 “Ullas Corners” inside current well being services. These grew to become one-stop factors the place sufferers may acquire free anti-seizure medicines, get checked and be reminded of their subsequent go to.
Behind these easy counters ran a quiet digital engine. A custom-built platform tracked each affected person, after they had been recognized, which medicines they took, after they missed a follow-up. Alerts had been despatched earlier than dropouts occurred. Docs may see patterns, shortages and drawback areas in actual time. For advanced instances, tele-consultations linked remote villages to AIIMS neurologists in Delhi. For the primary time, somebody having seizures in a forest hamlet had entry to the identical experience as a affected person in a metro metropolis.
The outcomes had been startling. Inside months, sufferers reported fewer seizures. Information confirmed that 93% skilled a big discount in assaults. Epilepsy-related deaths within the district fell by 83%, dropping from 42 a yr to simply seven. For context, epilepsy-related mortality in India is never tracked on the district stage, regardless of research estimating 1000’s of preventable deaths yearly due to untreated seizures. East Singhbhum’s expertise is among the many few documented instances the place a public-health intervention has demonstrated such a pointy mortality decline inside a single yr. Households that after spent a painful share of their earnings on therapy noticed their out-of-pocket prices fall by practically 70%. For a lot of, the largest change was not medical however social as kids returning to faculty, adults going again to work, marriages not known as off.
Baskey was one in all them. Given fashionable anti-seizure treatment for the primary time in her life, she has been seizure-free since. She talks now about studying new expertise, about stepping outdoors with out worry. “Individuals take a look at me in another way now,” she says. “Not with worry, however with hope.”
What makes Undertaking Ullas stand out is that it didn’t cease at medicines. The programme recognised that epilepsy typically begins even earlier than delivery. Problems like lack of oxygen throughout supply are a serious trigger. So, the district doubled down on maternal and little one well being by pushing institutional deliveries, early antenatal check-ups and new child screening. Right this moment, practically each delivery in East Singhbhum occurs in a medical facility. Early indicators counsel that new childhood epilepsy instances linked to delivery problems are already declining.
Group possession grew to become the mission’s quiet spine. By way of the “Ullas Mitra” initiative, abnormal residents started sponsoring medicines for sufferers who couldn’t pay even a rupee. Self-help teams and panchayats took cost of consciousness conferences, breaking myths that epilepsy was contagious or supernatural. Over time, the dialog shifted from hiding the sickness to treating it like another illness.
Replicating Ullas
Different elements of Jharkhand have begun copying the mannequin. Buoyed by East Singhbhum’s outcomes, the Jharkhand authorities is now getting ready to scale Undertaking Ullas throughout the complete state. The Centre, too, is intently monitoring the pilot, with plans underway to replicate the mannequin in high-burden states akin to Uttar Pradesh, Bihar and Rajasthan, the place epilepsy therapy gaps stay among the many widest within the nation.
Coverage platforms are finding out it as proof that district-level governance, when accomplished proper, can resolve issues typically left to massive hospitals and large cities. Undertaking Ullas doesn’t declare to have eradicated epilepsy, however it has proven that even a deeply stigmatised, uncared for situation may be tackled with empathy, information and persistence. It has proven that lives don’t want to be misplaced as a result of methods fail to see them.
In Baskey’s village, seizures not imply silence. They imply a go to to the Ullas Nook, a strip of tablets, a follow-up date written rigorously on a card and the quiet confidence that tomorrow will look completely different from yesterday.
(Graphic by Sadhana Saxena)
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