Cash aid for rare disease patients hiked from Rs 20 lakh to Rs 50 lakh

The rare disease community in Bengaluru is elated as the health ministry has increased the financial support for them from Rs 20 lakh to Rs 50 lakh.

While it was previously offered to only 40% of the population eligible under the Pradhan Mantri Jan Arogya Yojana for a certain category of diseases, it will now be available to all.

As per an official memo issued on May 19 by Manish Raj, Undersecretary at the Health Ministry, the following paragraph will be removed from the National Policy for Rare Diseases, 2021:

“Financial support up to Rs 20 lakh under the Umbrella Scheme of Rashtriya Arogya Nidhi shall be provided by the Central Government for treatment of those rare diseases that require a one-time treatment (diseases listed under Group 1). Beneficiaries for such financial assistance would not be limited to BPL families, but extended to about 40% of the population, who are eligible as per norms of Pradhan Mantri Jan Arogya Yojana, for their treatment in government tertiary hospitals only.”

“Financial support up to Rs 50 lakh shall be provided to the patients suffering from any category of rare diseases. The financial support will be provided to the patients for the treatment in any of the Centre of Excellence (CoE) mentioned in NPRD-2021, outside the Umbrella Scheme of Rashtriya Arogya Nidhi,” the memo said.

Conditions laid

Prasanna Shirol, Co-founder and Executive Director, Organisation for Rare Diseases India, said the grant was earlier available only for a few conditions in Group 1, which involved one-time therapies like Stem Cell Therapy and Gene Therapy.

“But now the grant is for all rare diseases, including lung transplants. Some treatments are not available in India because there was no reimbursement. Now, even those companies may come,” he added.

According to Shirol, of the eight centres of excellence in India, Karnataka has only one: Indira Gandhi Institute of Child Health.