Health Ministry grants Rs 22.20 crore fund for treatment of 134 rare diseases patients

“Since the guidelines were issued, applications from patients seeking financial assistance have been received from eight CoEs, of which Rs 22.20 crore have been released for the treatment,” an official source told PTI.

The budget allocation for the financial year 2022-2023 for rare diseases was Rs 25 crore. The rest of the 2.80 crore will soon be disbursed for the treatment of rare disease patients, the source said.

The guidelines mention that the maximum financial assistance admissible under the scheme will be up to Rs 50 lakh per patient and the financial assistance per patient will be given to the concerned CoE, where the patient is getting treatment, it said. As envisaged in the policy, the state governments shall also support patients of rare diseases.

The guidelines also mention about the crowdfunding portal which was set up in August 2021 for receiving voluntary funds for patients suffering from rare diseases.

There are three groups in which patients diagnosed with rare diseases have been classified.

Group 1 includes disorders amenable to one-time curative treatment, while Group 2 includes diseases requiring long-term lifelong treatment having a relatively lower costs of treatment, and the benefit has been documented in the literature.

Under group 3 falls those diseases for which definitive treatment is available but challenges are to make an optimal patient selection for benefit, very high cost and lifelong therapy.

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