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National Policy for Rare Diseases, 2021- Analysis

  • 05 April, 2021

  • 5 Min Read

National Policy for Rare Diseases, 2021- Analysis


  • The recent notification of the National Policy for Rare Diseases 2021 is pegged on this principle of inclusion.

Details of the policy

  • It offers financial support for one-time treatment of up to ?20 lakh,
  • Introduces a crowdfunding mechanism,
  • Creates a registry of rare diseases, and
  • Provides for early detection.
  • The policy has categorised rare diseases in three groups:
  1. Group 1: Disorders amenable to one-time curative treatment.
  2. Group 2: Those requiring long term or lifelong treatment.
  3. Group 3: Diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong therapy.

What is a rare disease?

  • Rare diseases are broadly defined as diseases that infrequently occur in a population, and three markers are used —
    • the total number of people with the disease,
    • its prevalence, and
    • the availability/non-availability of treatment options.
  • WHO defines rare disease as having a frequency of less than 6.5-10 per 10,000 people.
  • As per an estimate, there are 7,000 known rare diseases with an estimated 300 million patients in the world; 70 million are in India.
  • According to the Organization for Rare Diseases India, these include:
    • inherited cancers,
    • autoimmune disorders,
    • congenital malformations,
    • Hirschsprung’s disease,
    • Gaucher disease,
    • cystic fibrosis,
    • muscular dystrophies and
    • Lysosomal Storage Disorders (LSDs).

Issues with the policy

  • As per the Policy, diseases such as LSD for which definitive treatment is available, but costs are prohibitive, have been categorised as Group 3.
  • However, no funding has been allocated for the immediate and lifelong treatment needs, for therapies already approved by the Drugs Controller General of India.
    • Experts point out that the costs to help already-diagnosed patients might be in the range of ?80-?100 crore annually.
  • If the Centre can extend the cost-sharing agreements that it has worked out with Kerala, Tamil Nadu and Karnataka, with other States too, its share of the annual costs will be halved.

Way forward

  • The Centre can, however, still set aside a substantial corpus to fund life-saving treatments, even as it rolls out the policy.
  • Doing so will not only complete a job well begun — even if not yet half done — but also cement its commitment towards the welfare of every single citizen in India.

Source: TH

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