Understanding Rare Diseases In The Context Of Health Insurance Policies

Rare diseases are just that, they are rare. They affect only a very small portion of the population. While the World Health Organisation (WHO) defines rare diseases as those diseases that have a prevalence of one or less per 1000 population, the Organization for Rare Diseases India (ORDI) defines them as one in 5,000 or less for the Indian context.

Why Rare Diseases Lack Dedicated Insurance Products Despite Irda Guidelines

The exclusions under a health insurance policy have been standardized as per the Insurance Regulatory Development Authority (Irda) regulations, which are being followed by all insurers. “There is no exclusion for these conditions. However, conditions like Duchenne muscular dystrophy (DMD) do not have any cure, and only symptom management and supportive therapy are possible,” says Hari Radhakrishnan, expert, Insurance Brokers Association of India (IBAI).  

The health insurance, being primarily a hospitalization-oriented coverage, does not offer supporting treatment and long-term care. Only if hospitalization is required to manage conditions, the health insurance may come into play.

At the moment, the insurance market in India lacks policies that specifically address such conditions. This is because these diseases are rare. The prevalence rates are low.

“For instance, the prevalence rate for DMD is globally 4.8 per 100,000 people. Hence, developing products may not be viable as there may not be much take-up rate to balance the expected claims outgo, which can be quite high in long-term care situations,” says Radhakrishnan.

What You Can Do 

Review Your Policy Carefully

The level of coverage can vary significantly from one insurer to another. So it is important to check. While some rare diseases may be covered, many insurers will have specific exclusions or waiting periods.

Check the policy details for what is included and what is excluded. If you secure health insurance before a diagnosis, it increases the chances of being covered. Also, constantly renewing the policy so that it does not lapse ensures the protection stays.

Consider Government Assistance

Since health insurance may have limitations, you may need to explore government schemes such as financial assistance provided by The National Policy for Rare Diseases (NPRD), which provides assistance of up to Rs 50 lakh per patient at designated Centers of Excellence (CoEs).

Have A Health Fund

Treatment of rare diseases can be very expensive. So it is important to maintain a dedicated savings or a health fund if you can afford it.