New Delhi: The corona epidemic has caused panic all over the world. Union Health Minister Dr. Harsh Vardhan on Saturday allowed the "National Policy for Rare Diseases 2021," which is intended to focus on research and production of medicines in the country for treatment of serious or rare diseases as well as to reduce the large cost or expenses incurred in the treatment of rare diseases. 20 lakh has been provided in the name of assistance under the National Arogya Fund for the treatment of rare diseases under the scheme. The scheme has been brought up after a series of discussions with different experts.
The health ministry said that such subsidy will not be confined to BPL families, but the benefits will be extended to about 40% of the population who are eligible under the PM Jan Arogya Yojana. The ministry's statement said that financial assistance for the treatment of rare diseases has been proposed under the National Arogya Nidhi Scheme and not under Ayushman Bharat PMJAY.
Important Highlights of 'National Policy for Rare Diseases 2021':-
1. Effective and safe treatment for rare diseases is needed in recent years. The cost of treatment of rare diseases is very high. As well as reducing the expenses incurred in the treatment of such diseases, the policy aims to focus on research and local production of medicines for the treatment of these diseases in the country.
2. The Supreme Court and the individual High Court had expressed concern about the lack of a national policy for rare diseases. Research, availability, and access to medicines are difficult to process the treatment of rare diseases. The policy aims to help the country overcome these challenges.
3. On January 13, 2020, a draft of the policy was placed in the public sector and their suggestions and views were sought from stakeholders, the general public, organizations, states, and union territories. A statement issued by the Ministry said that the suggestions received from an expert committee on behalf of the Ministry of Health have been examined in depth.
4. With the help of Health and Wellness Centres, District Early Intervention Centres, and Counselling, the policy aims at detecting rare diseases and detecting their patients, thereby helping in the treatment of such diseases and treatment of patients.
5. Those suffering from rare diseases (rare illness policy listed under Group-I) who need treatment once they will receive financial assistance up to Rs 20 lakh under the National Arogya Fund. The scheme will cover about 40% of the population who are eligible under Prime Minister Jan Arogya Yojana.
6. A registry of rare diseases based on a national hospital will be created to ensure adequate data for those interested in research and development, providing adequate data for the definition of rare diseases and for research and development associated with rare diseases within the country.
7. The policy also considers a crowdfunding arrangement, which will encourage corporates and individuals to provide financial support through a robust IT platform for the treatment of rare diseases.
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