Agartala, 12 Sep 2026: The Health and Family Welfare Department, Government of Tripura, has shared an update on the treatment of Manasri Chowdhury, a child diagnosed with Spinal Muscular Atrophy (SMA) Type 1, stating that the Assam Medical College and Hospital (AMCH), Dibrugarh—one of the designated Centres of Excellence (CoE) for rare diseases—has provided medicines to the child under the Rare Disease Programme.
Manasri’s parents, Dhruba Chowdhury, a resident of Hapania, Agartala, had approached Chief Minister Manik Saha during Mukhyamantri Samipeshu in June 2026, seeking government assistance for their daughter’s treatment. The child’s condition has affected her muscle development and overall physical development.
Following the request, the Chief Minister wrote a D.O. letter to the Union Health Minister on July 9, 2026, seeking possible assistance for Manasri’s treatment.
In response, the Union Health Ministry informed the Chief Minister on July 24, 2026, that under the National Policy for Rare Diseases (NPRD), 2021, financial support of up to ₹50 lakh per patient is available for treatment of identified rare diseases at designated Centres of Excellence.
The ministry identified RIMS Imphal, Assam Medical College and Hospital (Dibrugarh), and IPGME&R Kolkata as Centres of Excellence in the eastern and northeastern region. The family was advised to get Manasri evaluated at the nearest CoE for further assistance.
According to the Health Department, the contact details and addresses of the CoEs were shared with Manasri’s parents. The family subsequently visited AMCH, Dibrugarh, where the child was registered and received 12 vials of Risdiplam on August 21, 2026.
The medicine is expected to be sufficient for approximately eight months. As per the prescription and treatment plan issued by AMCH, Dibrugarh, the medication provided is valued at around ₹2.29 lakh.
Since the medicine was provided under the Rare Disease Programme, the family remains eligible for further financial assistance of up to approximately ₹47.31 lakh, subject to the provisions of the programme and recommendations of the concerned Rare Disease Committee.
However, the CoE has reportedly informed the family that while Risdiplam has shown effectiveness in other types of SMA, its efficacy in SMA Type 1 is very limited.
Meanwhile, Manasri’s parents had also approached the Tripura Government seeking a certificate regarding the nature and quantum of financial assistance available from the government, which was required for seeking assistance from Tata Trusts. The Medical Superintendent of Agartala Government Medical College and GB Pant Hospital, on behalf of the Health Department, issued the certificate to the family on July 27, 2026.
The department has learnt that, based on the certificate, Tata Trusts has agreed to provide ₹20 lakh towards the child’s treatment.
The family also reportedly took Manasri to AIIMS, New Delhi, in July 2026, where she was evaluated by an expert medical team. According to the AIIMS assessment, the drug Zolgensma (Onasemnogene abeparvovec) replaces the deficient SMN1 gene but cannot regenerate motor neurons that have already undergone irreversible degeneration.
The AIIMS team noted that the greatest potential for near-normal development is achieved when treatment is provided presymptomatically and that the benefits decrease with disease progression. For children with established disease, the expected benefit is primarily disease modification and preservation or gain of residual motor function rather than normalization of development.
The AIIMS evaluation committee has recommended Zolgensma for Manasri Chowdhury, while also noting that the drug was awaiting approval from the Drug Controller General of India (DCGI) at the time of the assessment.
The Tripura Health Department said government officials are in regular contact with Manasri’s parents and are working to provide the best possible treatment and necessary assistance to the child.
