In 2019, upon my Multiple Sclerosis diagnosis, I was admitted to the hospital for five days. At discharge, I received a bill of Rs 2 lakh, an amount more than double my monthly income at the time. My corporate insurance covered 90 percent of it and I paid the rest. I left feeling fortunate, even reassured.
It took me a year to understand how fragile that reassurance was. As mobility challenges set in, I had to step away from my career. With that,
Not taking personal was one of my biggest mistakes. One I cannot undo because health is typically meant to be purchased before illness. Once a condition is diagnosed, it is classified as pre-existing and is often excluded for life or is heavily restricted.
Even relatively manageable conditions are treated with caution. For instance, thyroid disorders often come with waiting periods of up to three years before any claims can be made, despite continuous premium payments. If that is the case for common conditions, the exclusion of complex, lifelong illnesses like MS is inevitable.
I have been covered under a family health insurance plan since 2004, with premiums paid consistently for over 20 years.
However, a , in order to accommodate my condition was denied on the grounds that it was considered a pre-existing condition, leaving no room to adjust coverage when needed the most.
The disease-modifying therapy I rely on for MS- Ocrevus (ocrelizumab) costs approximately Rs 2.81 lakh per infusion, excluding hospital and related expenses. In total, each cycle comes close to Rs 3.5 lakh.
Administered every six months, this brings the annual cost to nearly Rs 7 lakh. This amount is about twice the annual income of a middle-class individual in urban India.
In principle, insurance exists to protect against uncertainty. In practice, it often benefits those who secured coverage before illness struck. For those who did not anticipate a chronic condition early enough, meaningful coverage remains out of reach.
I often find myself asking a simple question: why didn’t I know enough about health insurance to take it in time? The answer, I have come to realise, is not just personal- it is cultural.
Health insurance is rarely part of everyday conversation. It is not something we discuss openly with friends or within families, nor is it meaningfully taught in schools. I do not remember being told, at any stage, about its importance. Like many others, I learnt about it only after I needed it.
Even now, most people I know continue to rely entirely on corporate insurance, assuming it will be enough. Few expect that illness could also mean losing their financial security and perhaps, no one should have to live with that fear.
What has been harder to process is the shift in response after my diagnosis. Before, no one spoke about insurance. After my diagnosis, it became a question of personal responsibility. Why didn’t you plan better? I was asked. The same advice that was never offered earlier was now delivered with certainty.
I accept that I did not plan better. But the larger question remains: why is this something we are expected to learn only in hindsight? If awareness is truly everywhere, as we are often told, why does it so often arrive only after the damage is done?
The truth is we do not talk about health insurance until it is too late. Preparedness is treated as individual responsibility but the knowledge required to prepare is never meaningfully shared.
There have been few advocacy efforts aimed at securing insurance coverage for MS. The most significant recent effort has been led by the Multiple Sclerosis Society of India (MSSI) through its 2024 #InsureMyMS campaign- a nationwide advocacy initiative calling for fair and inclusive insurance coverage for people living with MS.
Apart from this, policies for persons with disabilities offering coverage of up to Rs 5 lakh have been proposed. However, they remain constrained by high premiums, and strict eligibility requirements such as benchmark disability certification. For many MS patients, whose symptoms are often invisible, these conditions make access difficult or entirely unattainable.
Yet without stronger regulatory intervention, such efforts remain limited in their ability to change how insurers assess and cover chronic illness. A system meant to provide financial security at the moment it is needed most should not depend on timing rather than need.