Union Health Minister Harsh Vardhan has approved the 'National Policy for Rare Diseases 2021' on Saturday. The policy aims to lower the high cost of treatment for rare diseases, The official in his statement said that the policy also visualizes the creation of a national hospital-based registry of rare diseases. It will help to keep adequate data about the definition of rare diseases and for research and development related to rare diseases within the country.
The statement further added that a provision for financial support up to Rs 20 lakh under the Umbrella Scheme of Rastriya Arogya Nidhi. This policy is proposed for the treatment of those rare diseases that require a one-time treatment i.e. diseases listed under Group 1 in the rare disease policy. The health ministry said that the beneficiaries will not be limited to BPL families, but the benefit will be extended to about 40 per cent of the population who are eligible under the Pradhan Mantri Jan Arogya Yojana. Also, financial support for the treatment of rare diseases is proposed under the Umbrella Scheme of Rashtriya Arogya Nidhi. The Draft policy for Rare Diseases was put in the public domain on January 13, 2020, on which comments/views were invited from everywhere and everyone. All the comments received were examined in depth by an expert committee constituted by the health ministry.
Moreover, the statement talked about rare diseases that are difficult to research. The patient pool is very small which often results in inadequate clinical experience. Another important thing is the availability and accessibility of medicines to reduce morbidity and mortality. The cost of treatment of rare diseases is prohibitively expensive. Various high courts and the Supreme Court have also expressed concern about the lack of a national policy for rare diseases.
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