All India Institute of Medical Sciences in Delhi (AIIMS-Delhi) has been granted more than Rs 23 crore in funding by the Centre for the treatment of rare diseases over the past five years. This information was revealed through a Right to Information (RTI) Act request filed by social activist Amit Gupta from Noida.

From a broader perspective, the Centre has disbursed approximately Rs 90 crore in funds to various Centres of Excellence (CoE) for rare disease treatment since 2019. AIIMS Delhi is one of the eight designated CoEs for this purpose in the country.

The funding allocated to AIIMS-Delhi for rare disease treatment fluctuated over the years. In 2019, the institution received Rs 1 crore, followed by no funding in 2020. However, the funding increased significantly in subsequent years, with Rs 4.10 crore in 2021, Rs 7.12 crore in 2022, and Rs 10.93 crore in 2023.

The Department of Health and Family Welfare has been responsible for the allocation of funds. According to records maintained in the Rare Disease Cell, the government released Rs 1.30 crore in 2019-20, Rs 10 crore in 2020-21, Rs 3.15 crore in 2021-21, Rs 34.99 crore in 2022-23, and Rs 40 crore in 2023-24 (till date) for rare disease treatment across various CoEs.

The treatment provided by AIIMS-Delhi covered a range of rare diseases, including MPS II, Gaucher, Atypical HUS, DMD, Tyrosinemia type-1, Adrenoleukodystrophy, Larons Syndrome, Griscelli syndrome type-2, severe combined immunodeficiency syndrome, among others.

The government’s National Policy for Rare Diseases (NPRD), launched in March 2021, categorizes rare diseases into three groups based on the nature of treatment required. Group 1 disorders are amenable to one-time curative treatment, Group 2 diseases require long-term or lifelong treatment with relatively lower costs, while Group 3 diseases present challenges such as high cost and lifelong therapy despite having definitive treatment options available.

Under the NPRD, patients suffering from any category of rare diseases can receive financial assistance of up to Rs 50 lakh for treatment at any of the designated CoEs.

In the financial year 2022-23, financial assistance of up to Rs 50 lakh was provided to CoEs for the treatment of 203 patients with rare diseases.

To avail financial assistance for rare disease treatment, patients may approach the nearest CoE.

Overall, the government’s efforts in funding rare disease treatment through CoEs like AIIMS-Delhi aim to alleviate the burden of these conditions and improve the quality of life for affected individuals and their families.

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