MP Biplab Kumar Deb Seeks Centre's Intervention for Baby Mansari's Rs.16–18 Crore SMA Treatment, No Official Government Crowdfunding Appeal Issued Yet

By Our Correspondent

Agartala, July 19, 2026

West Tripura Member of Parliament and former Chief Minister Biplab Kumar Deb has appealed to Union Health and Family Welfare Minister JP Nadda to facilitate life-saving treatment for 22-month-old Baby Mansari Chowdhury of Hapania, West Tripura, who has been diagnosed with Spinal Muscular Atrophy (SMA) Type-I, a rare and life-threatening genetic disorder.

In a letter dated July 18, 2026, Deb enclosed a representation submitted by the child's father, Dhruba Chowdhury, stating that doctors at AIIMS, New Delhi, have recommended Zolgensma Gene Therapy, regarded as one of the most advanced treatments available for SMA Type-I. The letter states that the estimated cost of the treatment is around Rs.16–18 crore, an amount far beyond the financial capacity of the family. The MP requested the Union Health Minister to issue necessary directions to facilitate the therapy on humanitarian grounds so that the child's life can be saved.

The case has once again highlighted the Government of India's National Policy for Rare Diseases (NPRD), 2021, under which patients suffering from notified rare diseases, including SMA, are eligible for financial assistance of up to Rs.50 lakh for treatment at designated Centres of Excellence. However, the policy also acknowledges that certain advanced therapies, including gene therapies such as Zolgensma, cost several crores of rupees and therefore require additional financial support beyond the government's assistance.

To address this challenge, the Ministry of Health and Family Welfare has established the Government of India Digital Portal for Crowdfunding and Voluntary Donations for Patients with Rare Diseases. The portal enables verified patients, whose details are uploaded by their treating Centres of Excellence, to receive donations directly through an official and transparent government mechanism. Individual donors, corporate organisations and philanthropic institutions can contribute securely through the portal, with donations going directly to the treating institution for the patient's care. If donations exceed the required amount, the surplus is utilised for the treatment of other rare disease patients.

A search of the official Government of India Rare Diseases Crowdfunding Portal as of July 19, 2026, however, did not show any publicly listed crowdfunding appeal for Baby Mansari Chowdhury of Tripura. While the portal contains details of thousands of registered patients from across the country, including several SMA patients, no official listing for Mansari Chowdhury could be verified at the time of publication. But some individuals in Tripura are trying to generate some amount through crowdfunding by their own way.

This suggests that in this child's case may still be undergoing documentation or registration by the treating Centre of Excellence AIIMS, or that the official fundraising page has not yet been made publicly available. Until such registration is completed, there is no publicly verifiable Government of India crowdfunding appeal for the child.

Meanwhile, the Tripura Government has already extended administrative support to the family following the intervention of Chief Minister Prof. (Dr.) Manik Saha. Officials of Tripura Bhawan in New Delhi have been coordinating with AIIMS to facilitate medical evaluation and treatment for the child.

The issue has also generated widespread public sympathy, with several individuals and organisations expressing their willingness to support the family through various initiatives.

In view of the Government of India's established policy for funding treatment of rare diseases, experts in Tripura say that any large-scale public financial contribution should ideally be channelled through the official Ministry of Health and Family Welfare Rare Diseases Crowdfunding Portal once the patient's case is formally registered. Such a mechanism ensures transparency, institutional oversight, proper utilisation of donations and direct transfer of funds to the treating institution, while protecting donors and beneficiaries alike.

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