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Are Rare Diseases Included in Indian Health Insurance Plans?

By Juhi Walia
26 August 2022, 1:45 PM

Diabetes, hypertension, thyroid - nearly every household has one or more of these conditions. But did you know that you might be suffering from some ailments and not even be aware of them? We refer to it as a rare disease. So, if you have questions about what, why, and how it is caused, as well as whether or not it is covered under health insurance, you've come to the right place.

When it comes to the general population, rare diseases only impact a small portion of people, and their rarity raises certain concerns. A rare disease, as defined by the World Health Organization (WHO), is one that affects one or fewer ones per 1000 people. But in India, a rare ailment is one that affects less than one person out of every 2500 individuals. A disease may be prevalent in one area while being rare in another. For example,  thalassemia, an anaemia of hereditary origin, which is unusual in Northern Europe, but it is frequent in the Mediterranean region. "Periodic disease" is more prevalent in Armenia than in France. There are also other common diseases with uncommon variations. People who have rare diseases can get treated even as the costs may be high. But health insurance plans are there to help you cover the treatment cost. We’ll discuss everything about rare diseases. So, keep reading!

What are the Characteristics of Rare Diseases?

  • All genetic diseases are rare diseases but not vice versa.
  • The cause remains unknown for many rare diseases.
  • They are serious, often chronic and progressive in nature.
  • Signs may be observed at birth or from early childhood.
  • 50% of rare diseases appear during adulthood.

Which are the Most Common Types of Rare Diseases?

To date, six to seven thousand rare diseases have been discovered and new diseases are regularly described in the medical literature. Here’s the list of the common ones:

  • Alzheimer’s Disease
  • Parkinson Disease
  • Cystic Fibrosis
  • Gaucher Disease
  • Osteopetrosis
  • Sickle Cell Anaemia
  • Hurler Syndrome
  • Wolman Disease

What is the Biggest Hurdle in Dealing with Rare Diseases?

  • Limited therapy options are available.
  • Difficulty in making an accurate diagnosis (this might take years, which can be crucial for slowing or arresting the progression of a disease).
  •  There is little to no research being done on the disease.
  •  It is challenging to identify doctors or treatment facilities with experience treating a specific  disease.
  •  Spending money on treatments that are typically more expensive than those for common illnesses.
  •  Accessing medical, social, or financial services or help is difficult because those making the decisions are unfamiliar with the disease. 
  •  Feelings of loneliness and being "orphaned" or abandoned by our healthcare system
  • The treatment cost is high. For instance, the cost of treating Pompe disease and Gaucher disease might range from INR 35-40 lakh.

Are Rare Diseases Included in Indian Health Insurance Plans?

Yes. The expense of treating a rare disease is covered by various health insurance plans in India. You can file a health insurance claim for the treatment costs under your health insurance plan whether or not a rare condition is inherited. The insurance plan will cover the costs of daycare visits, surgeries, post-hospitalization consultations, diagnostic testing, and other medical procedures. You can choose health insurance for rare diseases with a coverage value of up to INR 6 crore, depending on your budget.

However, not all rare diseases might be covered under health insurance plans in India. Furthermore, all health plans may not offer the same level of coverage. Therefore, it is advised that you research a health insurance policy's list of covered rare diseases before purchasing it. Additionally, select a health plan that will sufficiently cover your medical costs incurred in treating a rare disease. Paytm Insurance, a leading insurance marketplace, helps you select the best health insurance policy for rare diseases by showcasing numerous plans for you to compare.

How Long Must One Wait Before They May Submit a Claim?

Although a lot of health insurance plans cover rare diseases, you might not get coverage right once after purchasing the policy. Before you are qualified to submit a claim, there may be a waiting time.

Most health insurance plans include a 30-day initial waiting period, and coverage for rare conditions may become available after a two- to four-year wait. This means that before the insurance provider would pay for the expense of treating uncommon diseases, you must have the policy in force and faithfully pay the premium for a set amount of time.

The insurer will treat a rare disease as a pre-existing condition if it is discovered at the time you purchase the coverage or earlier. A pre-existing disease waiting period, which may last up to four years, will be applicable in such a situation.

What Can We Expect in Terms of Diagnosis and Therapy in the Future?

Science might have some answers for all rare disorders. A biological sample test can now be used to diagnose hundreds of rare diseases. The development of registries enhances our understanding of the natural history of many diseases. Researchers are working more and more through networks in order to communicate their study findings and move forward swiftly.


We all live in unpredictable times. When a virus like COVID-19 can create such havoc, one can imagine the plight of rare diseases. In addition to being challenging to diagnose, these conditions also require lengthy therapies that can be expensive. Therefore, it is advised to compare health insurance plans, whether online or offline, and choose the one that best fits your needs.

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1. How do I know if a disease that I have could be a rare disease?

In India, a disease is considered to be rare, if it affects less than one out of 2500 Indians.

2. What percentage of rare diseases could be considered as genetic?

According to a research, it was found that rare diseases currently affect 3.5% to 5.9% of the world's population at any given time, which is equivalent to a conservative estimate of 300 million people worldwide (4% of an estimated 7.5 billion people in the world), the number previously used by Rare Diseases International and EURORDIS. According to the data, there are over 6,000 clinically recognised uncommon disorders, 72% of which are hereditary and 70% of which manifest in childhood.

3. What types of rare diseases are easily recognisable?

Severe, typically chronic, and degenerative disorders are classified as rare diseases. Numerous unusual diseases, including Rett syndrome, neurofibromatosis, chondrodysplasia, osteogenesis imperfecta, and proximal spinal muscular atrophy, have symptoms that can be seen at birth or in infancy. However, more than 50% of rare diseases, such as Kaposi's sarcoma, thyroid cancer, amyotrophic lateral sclerosis, Charcot-Marie-Tooth disease, Crohn's disease, and Huntington's disease, develop in adulthood.

4. Why does the treatment for a rare disease prolong so much?

Because rare diseases are typically chronic, their treatment takes a lengthy period. Additionally, patients might be put on long-term pharmaceutical regimens and need to undergo repeated diagnostic procedures. Since there are only a few pharmaceutical companies producing medications for the treatment of rare diseases worldwide, they are quite expensive. 

5. Will I be eligible for health insurance if I am diagnosed with a rare disease?

Yes. Some health insurance plans in India will pay for the cost of treating a rare illness. Whether or whether a rare ailment is inherited, you may be eligible to file a claim for treatment costs under your health insurance. The insurance will pay for in-patient hospitalisation stays, outpatient procedures, diagnostic tests after inpatient stays, daycare visits, and other medical costs.

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