Union Health Minister Dr. Harsh Vardhan on March 30, 2021 approved the “National Policy for Rare Diseases 2021”.
- The Rare Diseases Policy aims to lower the high cost of treatment for rare diseases with increased focus on indigenous research with the help of a National Consortium. Increased focus of research and development and local production of medicines will lower the cost of treatment for rare diseases.
- The policy also envisages creation of a national hospital based registry of rare diseases so that adequate data is available for definition of rare diseases and for research and development.
- The Policy also focuses on early screening and prevention through primary and secondary health care infrastructure such as Health and Wellness Centres and District Early Intervention Centres.
- As per the policy, rare diseases have been earmarked under three categories based on the nature of treatment. They are disorders amenable to one-time curative treatment, diseases requiring long term or lifelong treatment having relatively lower cost of treatment and diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong therapy, like Lysosomal Storage Disorders (LSD) like Gaucher Disease.
- The policy provide for one-time government financial assistance of up to Rs 20 lakh for certain diseases.
