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GoI released National Draft Policy on Rare Diseases

GoI released National Draft Policy on Rare Diseases

The government on 13th January 2020 released a draft policy, under which it proposed to fund one-time treatment cost to the tune of Rs. 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. Under the draft of  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.

But, the scope of 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. There are few diseases like Gaucher’s Disease, Hurler Syndrome, Wolman Disease, where the treatment for some of these diseases may vary from Rs. 10 Lakhs to more than Rs.1 crore per year, with drug dose and cost increasing with age.

Rare diseases which are included in the draft policy are Haemophilia , Thalassemia, Primary Immunodeficiency in children, sickle cell anaemia, lysosomal storage disorders such as Gaucher’s disease, Hirschsprung disease, Hemangiomas  and Pompe disease.

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