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DAILY NEWS ANALYSIS

  • 04 April, 2021

  • 3 Min Read

National Policy for Rare Diseases 2021 Released

The Union Health Ministry recently released the policy.

Rare Diseases: WHO defines a rare disease as a lifelong disease or disorder that often highly weakens an individual. It has a prevalence of 1 or less per 1000 population.

  • Example: Haemophilia, Thalassemia, Sickle cell anaemia, auto-immune diseases among others.
  • However, every country has its own definition for rare diseases.
  • The US defines rare diseases as a disease or condition that affects fewer than 200,000 patients in the country.
  • Likewise, the EU defines rare diseases as life-threatening or chronically debilitating (weakening) condition. It should affect no more than 5 in 10,000 people.

About National Policy For Rare Diseases,2021:

  • Aim: The policy aims to lower the incidence and prevalence of rare diseases based on an integrated and comprehensive preventive strategy.
  • The strategy includes awareness generation, counselling programmes, providing affordable Health Care among others.

Key Features of the National Policy For Rare Diseases, 2021:

  • Categorisation: The policy categorizes rare diseases into three groups:
    • Group 1: Disorders amenable to one-time curative treatment;
    • Group 2: Diseases requiring long term or lifelong treatment; and
    • Group 3: Diseases for which definitive treatment is available, but challenges are to make an optimal patient selection for benefit.
  • Government Support:
    • The government will provide Financial support of up to Rs. 20 lakh under the Umbrella Scheme of Rashtriya Arogya Nidhi for treatment of those rare diseases listed under Group 1.
    • Moreover, Beneficiaries for such financial assistance would not be limited to BPL families.
      • About 40% of the population, eligible under Pradhan Mantri Jan Arogya Yojana, will also be eligible for assistance.
    • For group 2, the State Governments can consider supporting specific patients.
      • It includes a rare disease that can be managed with special diets or hormonal supplements or other relatively low-cost interventions (Diseases listed under Group 2).
  • Voluntary Crowdfunding: The government has said that it will assist in voluntary crowd-funding for the treatment of Group 3. It is because it will be difficult to fully finance the treatment of high-cost rare diseases of Group 3.

Rashtriya Arogya Nidhi scheme:

  • It provides financial assistance to patients living below the poverty line and who are suffering from major life-threatening diseases, to receive medical treatment.

Source: TH


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