Leena Khurana was 14 years old when her classmates began bullying her—and soon after, she had her first psychotic breakdown. Leena’s older sister Payal Kumar recalls how her younger sister was “an amazing girl” with a “very high IQ” who excelled in studies as well as music and swimming. Back then, the family was settled in Manchester, England, where Payal and Leena’s father K.M. Khurana worked as a doctor in the National Health Service. After her breakdown, Leena never quite recovered. She attempted suicide multiple times, experienced uncontrollable rage, and tried to run away from home.
Leena is now 52 years old and was diagnosed with schizophrenia in 1983. When K.M. Khurana retired and came back to India about 20 years ago, he brought Leena with him. But with time, Leena’s condition worsened, and she had to be institutionalized. “My parents tried everything for her, and inspired by her case, my father also did a lot of advocacy work around mental health,” Payal said. Now, three years since he passed away, Payal is Leena’s primary caregiver in New Delhi. Payal has huge expenses when it comes to ensuring quality care for her sister: She has to pay for Leena’s residential facility, medication, counselling sessions, and doctor consultations. Yet in all these years she hasn’t been able to obtain a medical insurance policy for her sister.
In India, mental health care was excluded from medical insurance until the Mental Healthcare Act, 2017, was passed. The law states that “Every insurer shall make provision for medical insurance for treatment of mental illness on the same basis as is available for treatment of physical illness.” Subsequently, the Insurance Regulatory Development Authority of India (IRDAI) directed insurance companies to immediately ensure that all of their plans henceforth should cover mental health on parity with physical health.
Payal was elated, hoping the new law and IRDAI direction meant that she would be able to obtain an insurance for Leena and their lives would somewhat change. But insurance companies continue to drag their feet. Every time Payal tells an insurance company about Leena’s pre-existing illness, they rebuff her, “saying that they have to come up with some rules and regulations internally” before they can comply with the Mental Healthcare Act—puzzling, given that it’s been four years since the passage.
More than 100 million Indians, or more than 13 percent of the Indian population, suffer from some sort of mental illness, with approximately 10 percent of Indians requiring immediate treatment, according to a survey by the National Institute of Mental Health and Neurosciences conducted in 2015-2016. These figures could be an undercount in a country where people often avoid reporting issues and fear seeking help, thanks to major stigma associated with mental health conditions. Experts have said that the COVID-19 pandemic’s deadlier second wave will only exacerbate India’s ongoing mental health crisis. “Anxiety disorders have increased tremendously. The mental health consequences of this pandemic are unprecedented, and there is this constant fear and uncertainty we find in the general population,” said Lakshmi Vijayakumar, psychiatrist and founder of SNEHA suicide prevention center in Chennai.
India’s public spending on health care is among the lowest in the world, and from this, a pittance is spent on mental health care. Additionally, accessibility and affordability of mental health care in India often act as deterrents for people. According to mental health activists, the process of identifying and treating patients is rather slow. “Mental health care professionals are primarily based in the cities. People in rural areas of India have to travel over vast distances to access support. There is a massive gap between the demand for mental health services and the availability of it,” said Vijay Nallawala, an author and the founder of the mental health support group Bipolar India in Mumbai.
Meanwhile, as Payal has experienced, insurance companies continue to pretend that they haven’t had time to implement the policies required by the Mental Healthcare Act. “On paper, insurance companies are asked to comply, but whenever a mentally ill patient approaches them, they are told that there is no such insurance for you,” said New Delhi-based Supreme Court advocate and mental health activist Gaurav Kumar Bansal. In April, the Delhi high court came down heavily on one that refused to honor the claim of a young woman who spent a month in a Gurugram hospital for schizoaffective disorder. The court ordered that all insurance companies must adhere to the Mental Health Care Act, 2017, and said any delay in doing so will be seen as violation of the law.
However, injustices continue to happen on the ground. Nallawala’s Bipolar India community has been trying to gather evidence of people with mental illness who face hardships on their medical insurance front. Recently, one member who is a caregiver to their son was denied a claim of about $4,706 by an insurer. “This is hard evidence and not a one-off example,” Nallawala said.
Vijayakumar says, “Some companies clearly state in their policies that while they will 100 percent reimburse physical health, only 50 percent for mental health conditions is reimbursed, which is discriminatory.”
Furthermore, “Unfortunately, most insurances cover only in-patient treatment,” Vijayakumar said (though as the April court ruling shows, even in-patient hospitalization coverage can be denied). Patients with anxiety and depression struggle to get reimbursed for outpatient therapy and long-term medication. “People get into debts and take loans” to cover those costs, Vijayakumar said.
Experts believe that the recent Delhi high court verdict is a favorable one for mental health patients and activists. According to Soumitra Pathare, director of the Centre for Mental Health Law and Policy in Pune, if a person is denied insurance for mental illness, they should submit a complaint to the insurance ombudsman and the IRDAI and attach the Delhi high court judgment. “If the problem continues, then they need to go to the court.”
That could equal a lot of people going to court. Payal has found that when she discloses her sister’s pre-existing illness, most insurance companies don’t respond at all or respond vaguely—including after the Delhi high court verdict.
What makes things even more challenging is that there are no standard guidelines from insurance companies and the IRDAI on what should be covered. “This gray area leads to delay in people getting insured,” said Jitendra Solanki, a Ghaziabad-based personal finance expert and estate planner for persons with disabilities. He said that India is at a preliminary stage of mental illness getting a health insurance coverage comprehensively. “You will find a company that might be covering outpatient treatment but another might not be doing so,” Solanki added.
Until proper guidelines are in place, people like Leena and her caregiver Payal have no recourse. While insurance companies provide her with policies for all her other family members, she has no such safety net for her own sister. “Why are [people with mental illness] discriminated against in this manner?” she said.
Update, July 6, 2021: This article has been updated to remove some personal information about Payal’s situation.