Centre Offers Up to Rs.50 Lakh Assistance for Manashree’s SMA Treatment, Concerns Raised Over Unauthorised Fund Collection
By Our Correspondent
Agartala, August 17, 2026
A significant development has emerged in the case of two-year-old Manashree Choudhury of Tripura, who is undergoing treatment for the rare genetic disorder Spinal Muscular Atrophy (SMA), with Union Health and Family Welfare Minister Jagat Prakash Nadda informing Tripura MP Biplab Kumar Deb that the Central Government can provide financial assistance of up to Rs.50 lakh under the National Policy for Rare Diseases (NPRD), 2021.
In a letter dated August 12, 2026, addressed to MP Biplab Kumar Deb in response to his letter of July 18 seeking financial and medical assistance for Manashree, Nadda stated that the Ministry of Health and Family Welfare is implementing the NPRD, 2021, under which financial support of up to Rs.50 lakh per patient is available for identified rare diseases through designated Centres of Excellence (CoEs).
The Minister specifically mentioned the availability of Centres of Excellence in the eastern and northeastern region, including the Regional Institute of Medical Sciences (RIMS), Imphal, Assam Medical College and Hospital, Dibrugarh, and the Institute of Post-Graduate Medical Education and Research (IPGMER), Kolkata.
According to the letter, Manashree’s father has been advised to get the child evaluated at the nearest Centre of Excellence or any other designated CoE for further assistance. The Nodal Officer for Rare Diseases at AIIMS, New Delhi, has also been requested to facilitate the patient. The letter makes it clear that further financial assistance would be provided on the recommendation of the Rare Disease Committee of the concerned Centre of Excellence, meaning that the assistance is subject to the prescribed medical and administrative process rather than being an unconditional direct payment.
The Union Health Minister has also advised that Manashree’s case be taken up through the Central Government’s Digital Portal for Crowd Funding and Voluntary Donations for Patients of Rare Diseases so that additional funds required for her treatment can be mobilised through the authorised mechanism.
The Central Government has already established this digital crowdfunding mechanism under the National Policy for Rare Diseases. The Ministry has stated that the portal is intended to facilitate voluntary contributions for patients suffering from rare diseases, with donations channelled through the designated system and Centres of Excellence.
The latest Central Government position is particularly significant because the estimated cost of advanced SMA treatment can run into several crores of rupees. Recent reports from Tripura have said that substantial public contributions have already been raised for Manashree’s treatment, while the family continues to face a major financial requirement.
However, the Centre’s letter has also raised an important question over the manner in which donations are being collected in Manashree’s name. Allegations have surfaced that some individuals or groups are collecting money claiming to support Manashree’s treatment through various cash collections and personal UPI/GPay QR-code accounts, rather than through a transparent, officially identifiable fundraising mechanism. These allegations require proper verification by the competent authorities, including examination of the accounts, identities of the collectors and the utilisation of the money collected.
The issue assumes greater importance after the Union Health Ministry itself has advised that Manashree’s case be connected with the Government’s dedicated crowdfunding portal. The Ministry has previously stated that its rare-disease crowdfunding system was created specifically to provide a structured mechanism for voluntary donations and that patients need to approach a designated Centre of Excellence for assessment and registration.
Therefore, no individual, organisation or group should be allowed to collect donations in Manashree Choudhury’s name without proper authorisation, transparent identification of the beneficiary, verifiable bank/UPI details and publicly accountable records of the money received and spent. In particular, donors should exercise extreme caution before transferring money to personal bank accounts, private UPI IDs, QR codes or making cash payments purportedly for Manashree’s treatment.
mittee.
more news...