Epilepsy advocates’ petition for health insurance coverage reaches India’s Supreme Court

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By Nancy Volkers, ILAE communications officer

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Volkers N. Epilepsy advocates’ petition for health insurance coverage reaches India’s Supreme Court. Epigraph 2025; 27(4): 36-39.

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Between 10 million and 12 million people in India have epilepsy. But according to regulations issued in 2020 by the Insurance Regulatory and Development Authority of India (IRDAI), epilepsy is one of nearly 20 medical conditions that can be legally excluded from insurance policies.

Insurance access issues mean that people with epilepsy have no coverage for their condition, as well as other conditions, illnesses, and injuries. People may conceal their epilepsy in order to obtain insurance but remain undiagnosed and untreated to avoid being identified. The lack of insurance access also means that hospital services—such as surgical evaluation, epilepsy surgery, and neuromodulation—are out of reach for the vast majority of Indians with epilepsy.

Now, a Supreme Court case is advocating for the right to health insurance for people with epilepsy in India.

No insurance, no surgery

In India, insurance coverage focuses on hospitals; outpatient services are not covered.

“Going to the doctor and getting your medications, that’s never covered,” said Dr. Jayanti Mani, consultant neurologist at Kokilaben Dhirubhai Ambani Hospital, Mumbai. But when it comes to serious seizure-related injuries, as well as diagnostic tests, surgical evaluations, epilepsy surgery, and other non-pharmacologic treatments, Dr. Jayanti said that insurance coverage can make a major difference in people’s lives. Without insurance, all of this care must be paid for out of pocket.

“I'm very passionate about epilepsy surgery,” she said. “But the minute people hear how much they have to pay for a surgical evaluation, everyone drops off the radar. And it’s very frustrating, because you feel that you have the skill and the interest but it’s not possible to get patients on board.”  

The Supreme Court case was initiated by Gurbani Bhatia, one of Dr. Jayanti’s former patients. Diagnosed with epilepsy at 17, Gurbani began taking antiseizure medications, which usually controlled her seizures. After earning a law degree, she secured a position in the chambers of Advocate Muhammad Ali Khan.

“We were looking at public-interest litigation (PIL) that our office could take up, and Dr. Jayanti had mentioned to me that health insurance is such a headache for people with epilepsy,” said Gurbani. “So I proposed this as a PIL case.

“We started doing our research, speaking to people with epilepsy who have tried to get insurance,” said Gurbani. “I had the opportunity to speak to different groups and non-governmental organizations about people’s experiences. That’s how I came across Yashoda.”

Foundation’s work highlighted

Yashoda Wakankar was diagnosed with epilepsy at age 7. Medications helped, but did not fully control her seizures. “I would get complex partial seizures every month, three or four a month, but still I completed school and a college education,” she said. She underwent epilepsy surgery in India at age 30, after a seizure left her with third-degree burns.

“After the surgery, I had an absolutely new life, without epilepsy and without seizures,” said Yashoda. “I realized that so many people around me have epilepsy and are suffering. So I started an epilepsy support group in 2004 and have been running that ever since.”

Yashoda’s Sanvedana Foundation offers support group meetings, a counseling center, and a marriage bureau to help people with epilepsy find marriage partners. In collaboration with corporations, the foundation also provides cost-free antiseizure medication to about 200 people with epilepsy each month.

“While doing all of these activities, I realized there is no insurance for epilepsy,” said Yashoda. “I myself had experienced this—we try to get insurance, and we tell the truth about our epilepsy, and get rejected. We were still able to afford my epilepsy surgery, but there are so many people who cannot.”

Gurbani and colleagues chose to name the Sanvedana Foundation as the petitioner for the Supreme Court case in order to spotlight the foundation’s efforts.

“You can file a PIL under any name, but in this case we wanted to use the opportunity to help Sanvedana,” said Gurbani. “This will be a landmark case and because we are going to the Supreme Court, this is something that will be covered nationally, if not internationally.”

Unconstitutional and discriminatory

The 8,000-word Supreme Court petition ultimately seeks “that persons with Epilepsy are regarded as an equal in State as well as private healthcare insurance policy.” It states that IRDAI and health insurers fail to take into account that “epilepsy” represents a wide spectrum of seizure frequencies and symptom severities, and that two-thirds of people with epilepsy can achieve seizure control on medication. The petition also states that the differential treatment of people with epilepsy violates the Indian Constitution, and the exclusion of epilepsy from health insurance policies is discriminatory and perpetuates stigma.

The petition’s core arguments:

• Unconstitutionality: The exclusion violates fundamental rights guaranteed under the Constitution of India, specifically Article 14 (Right to Equality) and Article 21 (Right to Life and Personal Liberty). The petitioner argues that denying people with epilepsy access to health insurance available to others is a form of discrimination.
• Unscientific Basis: The plea contends that the decision to permit permanent exclusion is “unscientific” and reflects an “outdated and incorrect understanding of epilepsy.” It highlights that medical advancements—particularly antiseizure medications—allow a majority of people with epilepsy to manage their condition and live seizure-free lives. The blanket exclusion fails to recognize this medical reality.
• Faulty Presumption: The petition argues that the exclusion is based on a “faulty presumption that all health-related illnesses of Persons with Epilepsy arise due to epilepsy." This denies them coverage not just for epilepsy but potentially for other ailments, creating significant restrictions in accessing care.

Gurbani and colleagues brought the case to court in May 2025. Dr. Jayanti said the petition was well received. “The judges saw the merit in it straight away,” she said. “They said this matter definitely needs to be addressed. So they have kind of mandated that the IRDAI should provide answers as to why epilepsy is being treated like this.”

The IRDAI’s response, originally scheduled for July 2025, was postponed and has not been rescheduled. However, IRDAI filed a counter affidavit stating that because regulations were updated in May 2024, people with any pre-existing condition—including epilepsy—can now obtain health insurance in India.

The 2024 updates are available on the IRDAI website. In part, they state:

“Insurers are required to make available products/add-ons/riders to provide wider choice to the policyholders/prospects catering to

• all ages
• all types of existing medical conditions
• pre-existing diseases and chronic conditions
• all systems of medicine and treatments including Allopathy, AYUSH [Ayurveda, Yoga & naturopathy, Unani, Siddha, and Homeopathy] and other systems of medicine
• every situation of treatment including domiciliary hospitalization, outpatient treatment, Day Care and Homecare treatment
• all regions, all occupational categories, persons with disabilities and any other categories
• all types of Hospitals and Health Care Providers to suit the affordability of the policyholders/prospects.”

However, Wakankar said that health insurers seem unaware of the changes.

“I and colleagues sent emails to the insurance companies, and we asked them directly about having insurance for epilepsy,” she said in an email. “Some companies wrote that they can give us insurance, [but] excluding epilepsy. It shows they were not aware of this new rule.”

Wakankar also phoned some insurance companies and discovered that they were not familiar with the updates.

Patience through the process

Before the counter affidavit was received, Gurbani estimated that the entire process would involve six to seven hearings. Given the 2024 changes to IRDAI policies, it is unclear what will happen. With the IRDAI changes apparently not being communicated to insurers, further hearings may still occur.

Gurbani has long-term goals related to the case. “Right now the public interest litigation is very specific – it’s just on the health insurance coverage aspect,” she said. “But if we are able to get a favorable order in this particular case, it opens avenues to pursue other litigation in the health sphere.”