Delays In Implementing The National Policy For Rare Diseases (NPRD) 2021

Delays In Implementing The National Policy For Rare Diseases (NPRD) 2021:

Several rare disease patients across India, including many children, are facing a life-or-death struggle due to delays in implementing the National Policy for Rare Diseases (NPRD) 2021, patient advocacy groups said recently.

• The Ministry of Health & Family Welfare launched the National Policy for Rare Diseases (NPRD) in March 2021.
• Currently, 63 rare diseases are included under the National Policy for Rare Diseases on the recommendation of the Central Technical Committee for Rare Diseases (CTCRD).
• The key features of NPRD, 2021, are as under:
  • The rare diseases have been identified and categorized into 3 groups.
    • Group 1: Disorders amenable to one-time curative treatment.
    • Group 2: Diseases requiring long-term/lifelong treatment with relatively lower cost of treatment.
    • 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.
• Financial support of up to Rs. 50 lakhs per patient is provided for the treatment at the notified Centres of Excellence (CoEs) for Rare Diseases.
• 12 Centres of Excellence (CoEs) have been identified so far, which are premier Government tertiary hospitals with facilities for diagnosis, prevention, and treatment of rare diseases.
• Treatment of patients starts immediately after registration with the CoEs.
• Nidan Kendras have been set up for genetic testing and counselling services.
• The Ministry of Health and Family Welfare has obtained exemption from the Goods & Services Tax (GST) and Basic Customs Duty on drugs imported for Rare Diseases for individual use and through CoE.
• As envisaged in the policy, the Department of Health Research has established the National Consortium for Research and Development on Therapeutics for Rare Diseases (NCRDTRD) for streamlining the research activities for rare diseases.
• It has provisions for the promotion of research and development for diagnosis and treatment of rare diseases; promotion of local development and manufacture of drugs; and creation of a conducive environment for indigenous manufacturing of drugs for rare diseases at affordable prices.