Manasri Gets Free SMA Drug, Family Clarifies Fund Appeal
Sep 13, 2026
The Tripura government on Saturday confirmed that two-year-old Manasri Chowdhury, who suffers from Spinal Muscular Atrophy (SMA) Type 1, has received free medicine worth over Rs 2 lakh under a state-backed rare disease programme, hours after her father clarified that the family's ongoing crowdfunding drive was never meant for that medicine, but for a separate and far costlier gene therapy still out of reach.
According to the Health and Family Welfare Department, the case moved forward after Manasri's father, Dhruba Chowdhury, a resident of Hapania, appealed to Chief Minister Manik Saha during Mukhyamantri Samipeshu in June. The Chief Minister subsequently wrote to the Union Health Minister, who responded that the Centre's National Policy for Rare Diseases, 2021, allows assistance of up to Rs 50 lakh per patient at designated Centres of Excellence, including Assam Medical College and Hospital (AMCH), Dibrugarh.
Manasri received 12 vials of Risdiplam, worth around Rs 2.29 lakh and sufficient for roughly eight months, at AMCH on August 21. The family remains eligible for up to Rs 47.31 lakh more under the scheme, though the Centre noted the drug's efficacy against SMA Type 1 specifically is limited. Separately, the Tata Trust sanctioned Rs 20 lakh after GB Pant Hospital issued a supporting certificate in July.
Doctors at AIIMS, New Delhi, who evaluated Manasri, recommended Zolgensma, noting that "the potential for near-normal development is greatest with presymptomatic treatment" and diminishes over time. The drug is still awaiting approval from India's Drug Controller General.
In a Facebook post on Friday, Dhruba Chowdhury said the family's crowdfunding, over Rs 6 crore raised so far toward a Rs 16.37 crore target, was always meant for Zolgensma, not Risdiplam, and that around Rs 3.5 crore more is needed before Manasri, currently around 12 kg, crosses a weight threshold that could affect her eligibility. He urged the public to disregard "incomplete" information circulating online.
The statement followed an earlier, sharper post in which he had questioned the state's delayed response. The government said it remains in regular contact with the family to provide further assistance.
