Manashree Chowdhury, a child from Agartala diagnosed with Spinal Muscular Atrophy (SMA) Type 1 has received 12 vials of Risdiplam from the Centre of Excellence (CoE) at Assam Medical College and Hospital (AMCH), Dibrugarh, following intervention by the Tripura government.
According to the state Health Department, Manashree’s parents from Hapania, Agartala, had approached Chief Minister Dr. Manik Saha during the Mukhyamantri Samipeshu programme in June 2026, seeking government assistance for their daughter’s treatment.
Manashree has been diagnosed with SMA Type 1, a rare genetic disorder that affects motor neurons and can severely impair muscle and physical development.
Following the family’s appeal, Chief Minister Manik Saha wrote a DO letter to Union Health Minister J. P. Nadda on July 9, 2026, seeking possible assistance for the child’s treatment.
In response, the Union Health Ministry informed the Chief Minister on July 24 that the National Policy for Rare Diseases (NPRD), 2021 provides financial assistance of up to Rs 50 lakh per patient for treatment of identified rare diseases at designated Centres of Excellence (CoE).
The Ministry identified 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, as CoEs serving the eastern and northeastern regions.
The child’s parents subsequently visited AMCH, Dibrugarh, where Manashree was registered and evaluated. On August 21, the CoE provided 12 vials of Risdiplam, which, according to the Health Department, are expected to cover approximately eight months of treatment.
As per the prescription and treatment plan issued by the Dibrugarh CoE, the medication provided is valued at around Rs 2.29 lakh. Since the medicine was supplied under the Rare Disease Programme, the family remains eligible for further assistance of up to Rs 47.31 lakh, subject to the provisions of the programme and recommendations of the concerned Rare Disease Committee.
The CoE has also reportedly informed the family that while Risdiplam has shown effectiveness in other forms of SMA, its efficacy in SMA Type 1 is very limited.
Meanwhile, the family had sought a certificate from the Tripura government regarding the financial assistance available for the child’s treatment, which was required to approach Tata Trusts. The Medical Superintendent of Agartala Government Medical College and GB Pant Hospital issued the certificate on July 27. Based on the certificate, Tata Trusts has reportedly agreed to provide Rs 20 lakh towards Manashree’s treatment.
According to the Health department, it learnt that Manashree was evaluated by an expert team at AIIMS, New Delhi, in July.
According to the AIIMS assessment, the child may be considered for treatment with Zolgensma (Onasemnogene abeparvovec). The expert committee noted that the therapy replaces the deficient SMN1 gene but cannot reverse motor-neuron degeneration that has already occurred.
The committee recommended Zolgensma with the objective of disease modification and preservation or improvement of residual motor function rather than normalisation of development. However, the assessment also noted that the drug was awaiting approval from the Drug Controller General of India at the time of the evaluation.
The Tripura Health Department said government officials remain in regular contact with Manashree’s parents and are coordinating to provide the best possible treatment and necessary assistance to the child.