Decoding insurance coverage for rare diseases: What is it, waiting period and more

However, Nijhawan added that the treatment costs for rare diseases are often extremely high. So, normal health insurance coverage will be unable to cover such treatment expenses

Therefore,  he said that it is imperative people get gene testing done for themselves and their family members. In case they test positive for any rare disease, one must opt for a higher sum assured to cover any expenses that might arise in the future.

Add-ons are currently not there.

Though Nijhawan believes that they can typically be developed for the same given the low insurance adoption rate, demand for rare diseases cover is even more abysmal as most people in India aren’t aware of rare disorders.

Policy-seekers can request their insurance company to create an addendum unique enough for specific cases if a person takes a genetic test and finds he/she is at risk for a rare disease, Nijhawan told CNBC-TV18.com.

“Since the insurance industry is evolving and innovating with IRDAI spearheading innovations such as ‘use and file’ and ‘regulatory sandbox’, an appetite exists to create customised and demand-driven products that meet the needs of end-users. Today, various innovative covers including ones for rare diseases could be made but most people do not know such requests can be made. Therefore, awareness is the first step in making this happen. As a person cannot apply for such insurance cover separately, a collective effort is needed to procure the same," he added.

For policyholders, it's also vital to understand that health insurance for rare diseases is the only way to prevent savings from getting exhausted. It's best to compare policies before picking the ideal one.