New Delhi: Patient advocacy groups have called upon the Union Health Ministry to address critical delays in the implementation of the ₹974 crore national programme for rare disease patients under the National Policy for Rare Diseases (NPRD) 2021.
In a letter addressed to Union Health Minister J.P. Nadda, the groups highlighted that many families dealing with rare diseases are experiencing catastrophic financial strain. The lack of timely financial support for life-saving treatments is undermining trust in the government’s commitment to the welfare of the rare disease community.
The letter specifically pointed out that 38 patients from three Centers of Excellence (CoEs) have exhausted the one-time financial support of ₹50 lakh and are now left scrambling for resources.
The advocacy groups made several recommendations, including:
–Removing the ₹50 lakh cap for patients with chronic and ultra-rare disorders like Lysosomal Storage Disorders (LSDs).
–Including Acid Sphingomyelinase Deficiency (ASMD) under the NPRD 2021.
–Establishing a robust monitoring mechanism to address administrative challenges and ensure accountability at all levels of NPRD implementation.
The Delhi High Court, in a ruling last year, directed the central government to establish a national fund for rare diseases. Subsequently, a ₹974 crore fund was recommended for allocation over the years 2024-25 and 2025-26. However, delays in disbursing this fund have left families struggling to meet the cost of critical treatments.
Currently, 12 Centers of Excellence (CoE)are designated to provide financial assistance and benefits to rare disease patients under the government’s scheme. Advocacy groups emphasise the urgent need for the health ministry to fast-track the roll-out of funds to alleviate the financial and emotional burden on affected families.
