A 22-month-old Tripura girl battling rare Spinal Muscular Atrophy (SMA) gets renewed hope as Centre signals financial support up to Rs 50 lakh under the National Policy for Rare Diseases, following MP Biplab Kumar Deb’s intervention and Union Health Ministry directions for medical evaluation and assistance.
A ray of hope has emerged for 22-month-old Manashree Chowdhury, a child from Tripura battling the rare genetic disorder Spinal Muscular Atrophy (SMA), after the Union Health Ministry indicated that financial assistance of up to Rs 50 lakh could be available under the National Policy for Rare Diseases (NPRD), 2021.
The development followed intervention by Rajya Sabha MP Biplab Kumar Deb, who raised Manashree’s case with the Centre and sought support for her treatment. Union Health Minister Jagat Prakash Nadda, in a formal communication to Deb, confirmed that patients suffering from rare diseases are eligible for assistance through designated Centres of Excellence (CoEs).
For patients from the Northeast, the designated centres include the Regional Institute of Medical Sciences (RIMS), Imphal, Assam Medical College, Dibrugarh, and the Institute of Postgraduate Medical Education & Research (IPGME&R), Kolkata. Manashree’s guardians have been advised to approach the nearest Centre of Excellence, where her medical condition will be evaluated.
Following the assessment, the Rare Disease Committee at the concerned centre will determine the appropriate course of medical and financial assistance. The Health Ministry has also directed the Nodal Officer for Rare Diseases at AIIMS, New Delhi, to facilitate assistance for Manashree and help advance her case.
SMA is a rare genetic disorder that affects motor neurons and can lead to progressive muscle weakness. For children affected by severe forms of the condition, timely medical intervention can be particularly important. The cost of specialised treatment, including gene therapy, can place an enormous financial burden on families.
In addition to government assistance, the Centre has highlighted the availability of a Digital Portal for Crowd Funding and Voluntary Donations. The platform is intended to help mobilise public contributions for patients suffering from rare diseases that require high-cost treatment.
The Centre’s response has given Manashree’s family renewed hope as they continue efforts to arrange the substantial funds required for her treatment. The intervention has also brought national attention to the child’s medical condition and formally opened avenues for assistance under the country’s rare disease policy.
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The development highlights the role of the NPRD, 2021, in supporting patients affected by rare diseases and improving access to specialised treatment. For families in smaller states such as Tripura, access to designated Centres of Excellence and government-supported financial mechanisms could provide an important pathway towards critical medical care.
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For Manashree and her family, the Centre’s assurance represents a significant step forward in their continuing fight against Spinal Muscular Atrophy.
