The wait is over: MoHFW approves much-awaited ‘National Policy for Rare Diseases 2021’

On 30th March 2021, Dr. Harsh Vardhan of the Ministry of Health and Family Welfare officially approved the much-awaited ‘National Policy for Rare Diseases 2021’. The new policy is pegged to be the harbinger of hope during the trying times of the virulent pandemic that has taken the world by storm since last year. Citizens are free to view the official document of the policy on the Ministry of Health and Family Welfare website. The Indian government encourages the citizens of the nation to partake in the quotidienne implementation of laws and policies, for we are but the watchdogs of democracy. For a long while, the pandemic has been sounding warning bells regarding the urgent need for a new policy aimed solely at the aspects of prevention and management of rare diseases. With the approval of the ‘National Policy for Rare Diseases 2021’, the Indian government proved that the need of the hour has been acknowledged and acted upon.

The highly heterogeneous and diverse nature of rare diseases poses many challenges, however, the nation’s medical community is confident in the advancements of science and the diligence of the medical workforce in implementing a new system to combat the recently emerged global obstacle. Early diagnosis is crucial to the process of prevention and cure of rare diseases, however the lack of awareness among general physicians coupled with the lack of diagnostic facilities, and adequate screening have had an impact on our ability to combat the spread of rare diseases. The lack of knowledge regarding the natural history or the pathophysiology of rare diseases makes it harder to prevent and diagnose. India has had extremely few studies on these subjects and the consequence of that is reflected on the status quo. The considerably smaller size of the patient pool leads to clinical inexperience, thereby making it tougher to deal with rare disease-related research. Easy availability and affordability play significant roles in the process of prevention and cure of rare diseases. Therefore, extended research in the field of differential treatments of rare diseases must be encouraged globally.

The draft of the new policy was made public on 13th January 2020 with the invitation for the general public, stakeholders, States and Union Territories, and various organizations to offer comments and reviews which were then carefully studied by an expert committee compiled and supervised by the Ministry of Health and Family Welfare. The revised policy aims to lower the existing exorbitant cost of treatment for rare diseases. It promises to focus exclusively on indigenous studies and research. The ‘National Policy for Rare Diseases 2021’ envisions the introduction of a national hospital-based comprehensive registry to ensure the availability of adequate data in similar future scenarios. Moreover, the new policy emphasizes the need for early screening and preventive measures by means of primary as well as secondary healthcare infrastructures, namely Health and Wellness Centres as well as District Early Intervention Centres (DEICs).

The recently introduced national policy will bring out unprecedented developments across all spheres of the medical state of affairs in the nation. It will strengthen numerous tertiary healthcare facilities by designating no less than 8 institutes as Centres of Excellence and offering them a one-time financial aid of near about Rs. 5 crores for further upgradation of facilities. Moreover, an additional provision of up to Rs. 20 lakhs have been designated under the Umbrella Scheme of Rastriya Arogya Nidhi for rare afflictions that need a one-time treatment. The financial aid is not limited to the Below Poverty Line population, but also further 40% of the population that is deemed eligible by the PM Jan Arogya Yojana. Lastly, the newly introduced policy promises to put into action a crowd-funding mechanism that allows philanthropic corporate and individual donors to make donations. The funds thus collected will be used for the research on and the treatment of all kinds of rare diseases by the Centres of Excellence. The nation’s general population and the medical community look forward to the implementation of the new policy that promises to undo the grave status quo that has ensued since the emergence of the virulent pandemic.

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