Rare diseases not only affect the health and well-being of individuals but also place a significant emotional and financial burden on families. Understanding treatment costs, insurance coverage, and policy limitations is essential for making informed healthcare decisions.
Having a loved one affected with a rare disease takes a significant emotional and financial toll on families. Described by the World Health Organization (WHO) as a health condition that affects fewer than one in 2,000 people in the general population, the financial burden caused by regular hospital visits and treatment often forces families to crowd fund for medications, procedures and doctors' consultation fees.
Cost, Risk and Government Intervention for Rare Diseases in India
Expenses for managing a rare disease often run into lakhs and crores. Take Spinal Muscular Atrophy (SMA) for instance, which is characterised by progressive muscle weakness. Zolgensma, a gene therapy for treating SMA, can cost about Rs 17 crore in India and excluding the cost of regular hospital visits and ongoing care.
Another example is of haemophilia, an incurable genetic disorder that prevents blood clotting, causing prolonged bleeding after cuts or injuries. This occurs because of an absence of a protein called ‘clotting factors’ or ‘Coagulation Factor Concentrates’ (CCFC). Based on severity, the annual treatment cost for haemophilia in India can go up to a few lakhs.
To reduce the financial burden of rare diseases in India, the government in March 2021 launched the National Policy for Rare Diseases. Under this, a Rs 50 lakh benefit is provided to each patient for treatment of 63 rare diseases.
Insurance Coverage for Rare Diseases in India
Considered either as a genetic occurrence or a preexisting condition with high treatment costs, insurance coverage for rare diseases in India has been tricky.
The earlier exclusionary clause for genetic disorders in insurance policies was held to be too broad, ambiguous and discriminatory by the Delhi High Court in 2018. The IRDAI (Insurance Regulatory and Development Authority of India) then asked insurance companies not to reject claims based on the exclusionary clause of genetic disorders.
The amount for total insurance coverage ranges from a few lakhs to a couple of crores. However, high insurance premiums for more coverage can make it difficult for some families to arrange the high policy renewal cost.
Waiting Period for Insurance Coverage
The normal waiting period for insurance coverage is 30 days, which means one can avail the benefits from the 31st day of the purchase of the policy. However, for rare diseases, it is two years, which means someone can avail the benefits of the coverage only after the policy has been renewed for two consecutive times.
In cases where a rare disease is a preexisting condition, meaning the patient has it at the time of purchasing an insurance policy, the waiting period may be extended for several years.
Coverage Plans Differ as per the Company
With different insurance companies having different terms and conditions for rare diseases, the coverage is provided for hospital admission, surgical procedures and diagnostic tests, among others. One must thoroughly read the policy document before buying one.
Conclusion
The exorbitant treatment cost for rare diseases affects families both emotionally and financially. With insurance companies providing coverage for rare diseases in India, one must carefully go through the policy document before purchase.
