Union health and family welfare minister Harsh Vardhan has approved the National Policy for Rare Diseases 2021, according to a statement issued by the health ministry on Saturday. The policy aims to bring down the high cost of treatment for rare diseases and was brought about after “multiple consultations with different stakeholders and experts in the area,” the statement said.

Around 40 per cent of the population covered under the Pradhan Mantri Jan Arogya Yojana will benefit from the policy and financial assistance will not be limited to just the BPL families, it added.

Here are 7 points you need to know about the National Policy for Rare Diseases:

1. Along with lowering the cost of treatment of rare diseases, the policy aims to increase focus on indigenous research and local production of medicines.

2. Those who are suffering from rare diseases (diseases listed under Group 1 in the rare disease policy) that require one-time treatment will have the financial support of up to Rs20 lakh under the umbrella scheme of Rashtriya Arogya Nidhi. It will cover about 40 per cent of the population who are eligible under the Pradhan Mantri Jan Arogya Yojana.

3. The policy will make use of a crowdfunding mechanism to cover the cost of treatment of rare diseases. As part of it, corporates and individuals will be encouraged to extend financial support through a robust IT platform.

4. A national hospital-based registry of rare diseases will be created to ensure adequate data and comprehensive definitions of such diseases are available for those interested in research and development. 

5. Through the help of Health and Wellness Centres, District Early Intervention Centres and counselling, the policy aims to screen and detect rare diseases early at early stages, which will in turn help in their prevention.

6. A draft of the policy was put in the public domain on January 13, 2020, and comments from stakeholders, the general public, organisations, states and Union territories were invited on the same. “All the comments received were examined in depth by an expert committee constituted by the health ministry,” the statement issued by the ministry read.

7. The Supreme Court and various high courts expressed concern about the lack of a national policy for rare diseases, the statement said. Rare diseases are difficult to research upon and availability and accessibility to medicines are important in the process of treatment. The policy aims to help the nation overcome these fundamental challenges.



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