NATIONAL POLICY FOR RARE DISEASES (NPRD) (Syllabus: GS Paper 2 – Health)
Context: Only four of the twelve Centres of Excellence (CoEs) for rare diseases have utilized the funds allocated by the Government of India under the National Policy for Rare Diseases (NPRD) over the past three years.
National Policy for Rare Diseases (NPRD)
- Launch: The Ministry of Health and Family Welfare, Government of India, launched the NPRD in March 2021
- Objective: To manage rare diseases with a focus on prevention, early detection, and treatment.
- Free Treatment Facilities: The NPRD provides free treatment at designated ‘Centres of Excellence’ (CoEs) for patients with rare diseases.
- Salient Features of NPRD 2021:
o Categorization: Rare diseases are classified into three groups:
ü Group 1: Disorders amenable to one-time curative treatment.
ü Group 2: Diseases requiring long-term or lifelong treatment with relatively lower costs and documented benefits, requiring annual or more frequent surveillance.
ü Group 3: Diseases with available but challenging treatments due to high costs and lifelong therapy needs.
o Centres of Excellence (CoEs): These are designated for diagnosis, prevention, and treatment of rare diseases and receive a one-time grant up to Rs 5 crore for infrastructure development if necessary.
o Financial Support for Patients: Financial support up to Rs 50 lakh is provided to patients for treatment at CoEs, excluding those covered by the Rashtriya Arogaya Nidhi (RAN).
o Rashtriya Arogaya Nidhi: RAN offers one-time financial assistance up to Rs 20 lakh for patients below the poverty line with Group 1 rare diseases, specifically for treatment at government hospitals with super specialty facilities.
o Promotion of Research and Development: NPRD promotes research and development for rare diseases, encourages local drug development, and aims to create an environment for affordable indigenous drug manufacturing.
