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National Draft Policy on Rare Diseases

Posted on : 17 Jan 2020

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  • The government released a draft policy, under which it proposed to fund one-time treatment cost to the tune of ₹15 lakh for certain treatable rare diseases, provided the patient was eligible under its flagship health insurance scheme, Ayushman Bharat’s Pradhan Mantri Jan Arogya Yojana.
  • Under the draft National Policy for Rare Diseases, the Ministry of Health and Family Welfare would provide financial support under its umbrella scheme Rashtriya Arogya Nidhi.
  • While Rashtriya Arogya Nidhi is aimed at providing financial assistance to patients living below the poverty line, under the rare disease policy, the financial benefits will also be extended to the broader class of Ayushman Bharat, which covers 40% of the population.
  • Under the policy, the government plans to notify certain medical institutes as Centers of Excellence for Rare Diseases.
  • However, the scope of the draft policy proposed to limit financial support to patients suffering from only a few rare diseases categorised under Group 1, like osteopetrosis and certain immune deficiency disorders that can be cured with treatment, and certain diseases Tyrosinemia, Fabry’s disease and Maple Syrup Urine Disease, which require kidney or liver transplants.
  • The draft policy cited lack of adequate resources not provides financial assistance to rare diseases that require lifelong treatment.
  • These diseases include Gaucher’s Disease, Hurler Syndrome, Wolman Disease, among others. Treatment for some of these diseases may vary from ₹10 Lakhs to more than ₹1 crore per year, with drug dose and cost increasing with age.
  • For these diseases, the government has sought alternate funding mechanism like setting up a digital platform for voluntary and corporate donations.
  • Cure SMA Foundation of India is a charitable trust for patients with spinal muscular atrophy, a rare genetic life threatening neuromuscular disease.
  • The Health Ministry had formulated a national policy on treatment of rare diseases in 2017, which envisaged the setting up of a corpus fund with an initial amount of ₹100 crore towards funding treatment of rare genetic diseases, but this never picked up due to budget constraints.
  • In the US, the Orphan Drugs Act provides incentives to drug manufacturers to encourage them to manufacture drugs for rare diseases, and similar incentives are also provided in the UK and certain other developed countries.

Article Related Questions

  1. The government released a draft policy on Rare Diseases; with reference to it consider the following statements
    1.A rare disease is also referred to as an orphan disease.
    2.These diseases include Gaucher’s Disease, Hurler Syndrome, Wolman Disease, among others.
    3.A rare disease is universally defined as a condition that affects fewer than 200,000 people.
    Which of the following statement is/are correct?

  2. 1.1 and 2 only

    2.2 and 3 only

    3.1, 2 and 3

    4.3 only

    Right Ans : 1, 2 and 3

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