The Union Health Ministry on January 13, 2020 released Draft National Policy for Rare Diseases-2020.
Features
- The draft policy 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.
- 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.
- 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.
- 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.
- The government plans to notify certain medical institutes as Centers of Excellence for Rare Diseases.
