How do Health Insurers Handle Rare Diseases?

Rare Disease Coverage in Health Insurance: What You Need to Know

Rare diseases are either genetic or caused by any pre-existing condition that requires expensive treatment. As per the previous exclusionary clause of not covering the genetic disorders under health insurance, rare diseases were kept uncovered.

However, the Delhi High Court considered it discriminatory and ambiguous in 2018. After that, the IRDAI has instructed insurance companies to stop rejecting claims for rare diseases on the grounds of the exclusionary clause on genetic disorders.

Keep reading for detailed insight!

What are Rare Diseases?

Rare diseases, as the name suggests, are those diseases which are detected in a minor percentage of the entire population. In India, any disease that affects 1 or fewer individuals per 2,500 is considered a rare disease.

Though most rare diseases are congenital or genetic, it is not necessary that individuals will always acquire them from birth. Some rare diseases, like Parkinson's disease, are usually found in individuals at older ages.

Although most health insurance providers cover rare diseases, their scope of coverage may vary across plans. Thus, for individuals having a medical history of rare diseases in their family, checking the coverage for such conditions is crucial before purchase.

What are the Different Types of Rare Diseases?

There are more than 10,000 types of rare diseases. Here are some common types that one should know:

• Down Syndrome: This affects the intellect of a person and the formation of cells in their body.
• Tourette's Syndrome: Repetitive vocalisation and involuntary movement called "tics" are the main characteristics of this disorder.
• Sickle Cell Anaemia: It is a blood-related disorder that causes abnormal haemoglobin levels.
• Haemophilia: It is a disability that impairs your body’s ability to control blood clotting, leading to excessive bleeding in affected individuals.
• Cystic Fibrosis: In this genetic disorder, your lungs and digestive system are affected.
• Muscular Dystrophy: It refers to a group of genetic diseases that lead to weakness and loss of muscle mass.
• Huntington’s Disease: It is a neurological condition that affects the movement, cognition, and behaviour of the individual.
• Marfan Syndrome: It affects the connective tissues of the body, causing abnormalities in the heart, eyes, and skeletal system.
• Parkinson’s Disease: It is a neurological condition that leads to movement problems in an individual.
• Narcolepsy: It is a neurological disorder that leads to sudden sleep attacks or daytime sleeping.
• Gaucher Disease: In this disorder, fatty substances are accumulated in certain organs and cells of the individual, causing multiple disorders.

Do Health Insurance Plans in India Cover Rare Diseases?

Most insurance providers in India cover the treatment expenses of rare diseases. However, the scope and extent of coverage will tend to differ based on the plan and the insurance company.

You can claim health insurance coverage regardless of whether the rare disease is genetic. It covers hospitalisation bills, surgical expenses, medication, treatment, daycare, and even post-hospitalisation care, depending on the plan you choose.

However, while selecting a health insurance plan for rare diseases, you should check the list of diseases covered by your health insurance provider. Since many rare diseases are not treatable in India, you should go through the list to check if you are getting coverage for your rare disease.

Is there Any Waiting Period for Health Insurance Covering Rare Diseases?

Usually, health insurance policies have a 30-day waiting period, and you can avail insurance benefits after this period ends. However, for rare diseases, the waiting period is 2 years.

So, you need to continue the policy for 2 years, through timely renewal, to avail the coverage. If you already have rare diseases at the time of purchasing the policy, the waiting period may be extended, as it is considered a pre-existing condition.