Somwari Baskey was eight years old when the first seizure struck her in year 2004. She still remembers the unsettling emotion in her mother’s eyes, the whispers that followed in the neighbourhood, and the slow closing of doors for school, friends and a normal life. In her village in Jharkhand’s East Singhbhum, epilepsy was not a medical condition; it was a social stigma.
For more than a decade, Baskey was treated with herbs and home remedies – not enough to tame the seizures. She dropped out of school after Class 8 and stayed mostly indoors, waiting for the next fall, the next blackout. Then, one fine day in 2025, someone from the government’s ASHA (Accredited Social Health Activist) programme knocked on her door and asked a simple question: “Have you heard of Project Ullas?”
That knock would quietly change not just Baskey’s life, but the fate of thousand others across this forested, tribal district in Jharkhand. Until recently, epilepsy here existed mostly in the shadows. Before the launch of Ullas in May 2025 official records showed just 123 registered patients in a district of over 2.2 million people, not because epilepsy was rare, but because it was invisible. Doctors estimate that more than 95% of people with epilepsy were untreated. Many didn’t even know their condition had a name. Others feared being labelled, avoided hospitals, or simply couldn’t afford lifelong medicines. Some died silently.What made East Singhbhum’s crisis unusual was not the scale of epilepsy, but the scale of neglect. District estimates suggest the treatment gap exceeded 95%, mirroring conditions seen in India’s most under-served tribal belts. National studies place epilepsy prevalence around 7 per 1,000 people, meaning a district of this size should have had nearly 10,000 patients, most of them invisible to the health system.
According to the World Health Organization (WHO), epilepsy affects nearly 50 million people worldwide, making it one of the most common neurological disorders globally. WHO estimates that almost 80% of people with epilepsy live in low- and middle-income countries, where access to diagnosis and treatment remains limited. While the condition can affect people of all ages, studies show that close to 60% of patients experience onset before the age of 20. India carries one of the largest national burdens, accounting for an estimated 15%–20% of the global epilepsy caseload, highlighting the disproportionate impact of the disease on younger populations and developing economies.
A different approach
Karn Satyarthi, deputy commissioner of East Singhbhum, tells ETHealthworld, “Epilepsy is a neurological disorder, but the majority of the caseload is found in developing and underdeveloped countries. This calls for a radically different approach.”
Conceived last year under the leadership of the East Singhbhum district administration and in collaboration with AIIMS New Delhi, Project Ullas was designed as a complete care pathway starting from community-level screening and diagnosis to free medicines, regular follow-ups and social reintegration. Its stated goal was blunt and unusually ambitious for a district programme: “Zero deaths from treatable epilepsy.”
For Satyarthi, that meant moving epilepsy out of specialist clinics and into the heart of public health delivery. “Our approach is fundamentally different because we have tried to solve the problem from a public health angle rather than treating it as another clinical issue. Project Ullas is probably the first such comprehensive effort in the country. Training, capacity building, diagnosis and aggressive follow-up are key to our success, and we aim to reduce deaths from treatable epilepsy to zero within a year,” Satyarthi adds.
In just one year, the programme has brought more than 2,500 epilepsy patients into continuous treatment and reached over 21,000 people through screening and awareness campaigns, sharply narrowing a treatment gap that had long gone unnoticed. The results speak for themselves: nearly 9 out of 10 patients experience fewer seizures, epilepsy-related deaths have dropped by 83 percent, and both patients and their families report significant gains in quality of life and community acceptance.
Explaining why epilepsy remains so widely untreated despite being manageable, Dr Mamta Bhushan Singh, professor of neurology at AIIMS New Delhi and the clinical lead of Project Ullas, says the problem is not medical complexity but misinformation. “More than 70% of epilepsy patients can be treated with simple, commonly available medicines. These patients never received treatment because of the belief that epilepsy always needs a specialist doctor,” she tells ETHealthworld.
“Seizures have one of the simplest and most affordable treatments. The medicines usually cost just INR300-INR500 a month. Once doctors and health workers at the ground level are properly trained, specialists are not needed for the majority of cases. Only about 25%–30% of patients require advanced care and referrals. The real challenge is closing the treatment gap, which is still over 95% in states like Uttar Pradesh and Bihar,” Singh explains.
Project Ullas was set out to do something radical in its simplicity: find people with epilepsy, treat them for free, follow them up regularly and bring them back into the mainstream without shame. No grand announcements, no flashy campaigns. Just steady work, village by village, clinic by clinic.
The first task was to find patients who had never been counted. ASHA workers, Sahiyas and community health officers began asking questions during routine visits. School teachers were trained to spot symptoms. Health camps reached deep into tribal blocks. Slowly, numbers that had stayed buried for years began to surface. Within a year, registered epilepsy patients jumped from 123 to over 2,500. What once looked like a rare disease was suddenly visible everywhere.
But finding patients was only half the battle.
The digital engine
Epilepsy is not cured by a one-time visit. It needs regular medicines, careful dosage and follow-ups that don’t break. For families earning daily wages, missing work for hospital trips or buying monthly drugs was often impossible. Project Ullas tackled this head-on by setting up more than 100 “Ullas Corners” inside existing health facilities. These became one-stop points where patients could collect free anti-seizure medicines, get checked and be reminded of their next visit.
Behind these simple counters ran a quiet digital engine. A custom-built platform tracked every patient, when they were diagnosed, which medicines they took, when they missed a follow-up. Alerts were sent before dropouts happened. Doctors could see patterns, shortages and problem areas in real time. For complex cases, tele-consultations connected remote villages to AIIMS neurologists in Delhi. For the first time, someone having seizures in a forest hamlet had access to the same expertise as a patient in a metro city.
The results were startling. Within months, patients reported fewer seizures. Data showed that 93% experienced a significant reduction in attacks. Epilepsy-related deaths in the district fell by 83%, dropping from 42 a year to just seven. For context, epilepsy-related mortality in India is rarely tracked at the district level, despite studies estimating thousands of preventable deaths annually due to untreated seizures. East Singhbhum’s experience is among the few documented cases where a public-health intervention has demonstrated such a sharp mortality decline within a single year. Families that once spent a painful share of their income on treatment saw their out-of-pocket costs fall by nearly 70%. For many, the biggest change was not medical but social as children returning to school, adults going back to work, marriages no longer called off.
Baskey was one of them. Given modern anti-seizure medication for the first time in her life, she has been seizure-free since. She talks now about learning new skills, about stepping outside without fear. “People look at me differently now,” she says. “Not with fear, but with hope.”
What makes Project Ullas stand out is that it didn’t stop at medicines. The programme recognised that epilepsy often begins even before birth. Complications like lack of oxygen during delivery are a major cause. So, the district doubled down on maternal and child health by pushing institutional deliveries, early antenatal check-ups and newborn screening. Today, nearly every birth in East Singhbhum happens in a medical facility. Early signs suggest that new childhood epilepsy cases linked to birth complications are already declining.
Community ownership became the project’s quiet backbone. Through the “Ullas Mitra” initiative, ordinary citizens began sponsoring medicines for patients who couldn’t pay even a rupee. Self-help groups and panchayats took charge of awareness meetings, breaking myths that epilepsy was contagious or supernatural. Over time, the conversation shifted from hiding the illness to treating it like any other disease.
Replicating Ullas
Other parts of Jharkhand have begun copying the model. Buoyed by East Singhbhum’s results, the Jharkhand government is now preparing to scale Project Ullas across the entire state. The Centre, too, is closely tracking the pilot, with plans underway to replicate the model in high-burden states such as Uttar Pradesh, Bihar and Rajasthan, where epilepsy treatment gaps remain among the widest in the country.
Policy platforms are studying it as proof that district-level governance, when done right, can solve problems often left to big hospitals and big cities. Project Ullas does not claim to have eliminated epilepsy, but it has shown that even a deeply stigmatised, neglected condition can be tackled with empathy, data and persistence. It has shown that lives don’t need to be lost because systems fail to see them.
In Baskey’s village, seizures no longer mean silence. They mean a visit to the Ullas Corner, a strip of tablets, a follow-up date written carefully on a card and the quiet confidence that tomorrow will look different from yesterday.
(Graphic by Sadhana Saxena)
