Epilepsy in India: A Network of Gaps, a Path to Change
By Arunima Rajan
Empowering primary care providers is the fastest way to early epilepsy intervention
Epilepsy, a neurological disorder that affects millions of Indians, operates in the shadows—caught between medical progress and social stigma. For Dr. Jaideep Bansal, Senior Director and Head of Neurology at Fortis Hospital Shalimar Bagh, this duality is a stark reality. “It’s frustrating,” he admits. “We have treatments that work, but stigma and ignorance stop people from seeking help.”
The myths, particularly in rural areas, are relentless. Families still see epilepsy as a curse or mental disorder. Hospitals, he believes, need to break this cycle. But it’s not just about brochures or awareness drives. “We need targeted community outreach and social media campaigns that educate people on the causes, treatments, and simple precautions. This is how we normalise epilepsy,” he explains.
Epilepsy is among the most prevalent neurological disorders worldwide, affecting approximately 50 million people, according to WHO estimates. Nearly 80% of these cases are concentrated in low- and middle-income countries, with India accounting for an estimated 12 million cases. A community-based study conducted in North India revealed epilepsy prevalence rates of 6.99 per 1,000 in rural areas, 5.48 in urban regions, and 4.07 for active epilepsy cases per 1,000 population.
First Seizure, Lasting Chaos
When a first seizure strikes, it’s not just a health crisis; it’s an organisational one. Patients are often rushed to nearby clinics, which stabilise them but lack specialised expertise. The result? Delayed referrals, misdiagnoses, and lost time. Dr. Bansal calls for a streamlined system: “Local clinics must stabilise the patient and ensure quick referrals to neurologists. A direct chain of care is critical.”
According to Hindustan Times, India has just 2,500 neurologists for over 1.4 billion people—one per 560,000—far below the WHO's standard of one per 100,000, with public hospitals and rural primary care centres severely lacking in epilepsy-specific tools and services.
The Telemedicine Promise
The prevalence of epilepsy in rural India is notably higher than in urban areas, highlighting the critical need to enhance healthcare services in rural regions and address the underlying causes of this disparity. A study conducted in Bangalore and surrounding areas found that epilepsy rates were nearly twice as high in rural areas compared to urban settings. Similarly, the annual incidence of epilepsy in rural populations was reported to be 0.42 per 1,000 people, significantly higher than the 0.27 per 1,000 recorded in urban populations. This gap can be attributed to factors such as insufficient antenatal and postnatal care, malnutrition, birth-related injuries, infections affecting the nervous system, higher rates of neurotrauma, and limited medical infrastructure in rural areas. Environmental exposures, including toxins and pollutants, may also contribute to the higher prevalence observed in these communities.
In rural India, where epilepsy care is scarce, telemedicine could be transformative. But will it deliver? Dr. Bansal thinks so—if hospitals and communities play their part. “India’s digital infrastructure has improved. Virtual consultations can connect patients in remote areas to specialists,” he says. But there’s a catch: “Awareness among rural populations about these services is essential. Technology alone won’t solve the problem.”
The Financial Faultline
For many, epilepsy care is unaffordable. Medications are expensive, and follow-ups are draining. Dr. Bansal suggests partnerships with NGOs and government programs to subsidise treatment. He also envisions integrating community healthcare workers into epilepsy management. “They can provide routine care locally under specialist supervision. This reduces costs and ensures follow-up,” he explains.
Primary Care’s Blind Spot
India’s primary healthcare system is robust in theory but patchy in execution. Dr. Bansal points out that many primary care providers lack training in epilepsy diagnosis. “Equipping primary care doctors with basic epilepsy management skills could revolutionise early intervention,” he says. Hospitals can lead this transformation through training programs and referral systems that guide patients to specialists efficiently.
The Role of Families
The stigma around epilepsy often begins at home. Families, weighed down by misinformation and fear, isolate patients instead of supporting them. Dr. Bansal stresses the importance of family counselling. “Counselling must be a formal part of epilepsy care. Families need to learn how to respond to seizures and create a supportive environment,” he says.
The Next Frontier: Personalised Medicine
While India has made strides in neurological care, the concept of personalised medicine remains a luxury for most. But Dr. Bansal is optimistic. “India’s genetic research ecosystem is evolving. Large hospitals can begin incorporating genetic insights into treatment plans. Over time, this will make tailored epilepsy care accessible and affordable,” he says.
A Radical Yet Practical Idea
If there’s one thing India’s healthcare system lacks, it’s a cohesive structure for epilepsy care. Dr. Bansal’s solution? A nationwide epilepsy network. “Imagine a digital platform connecting hospitals, specialists, and patients,” he says. This network could streamline consultations, ensure medication availability, and offer a reliable repository of information for patients and caregivers. “It’s ambitious but entirely achievable with the right focus.”
India’s epilepsy care ecosystem is a patchwork—of success stories, glaring gaps, and untapped potential. Dr. Bansal’s vision is one of integration: connecting the dots between community education, technological advancements, and affordable care. The road is long, but even small steps could be life-changing for millions of patients.