Rare Disease Day, held on the last day of February each year, is meant to raise awareness among the public about rare diseases and their impact on patients' lives. A disease is reportedly termed as rare in India when it affects fewer than one person in every 2,500. While coverage for these diseases is available under health insurance, it's vital to understand their scope and limits.
First, let's see which diseases come under the rare category
There are over
7,000 rare diseases, and collectively they affect millions of people worldwide. Some of these diseases are Cystic fibrosis, Huntington's disease, Duchenne muscular dystrophy, Sickle cell anaemia, and Pompe disease, among others.
Insurance coverage
Generally, rare disease treatments are covered by general health insurance policies. However, there may be a waiting period ranging from a few days up to two years, depending on the disease and the policy taken, said Ankur Nijhawan, CEO at AXA France Vie India Reinsurance Branch while talking exclusively to CNBC-TV18.com.
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.
Are there add-ons for the same?
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.
What's the solution?
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.
