Treatment for Monoshree: JP Nadda writes to Tripura's ex-CM
AGARTALA / NEW DELHI: The Union Government, in response to the situation of baby Monoshree, a patient suffering from Spinal Muscular Atrophy (SMA), has proposed a comprehensive course of action for her treatment and financial support, which was communicated by Union Minister for Health and Family Welfare Jagat Prakash Nadda in a letter to former Tripura Chief Minister and Lok Sabha MP Biplab Kumar Deb.
The letter outlines provisions under the National Policy for Rare Diseases (NPRD) established in 2021 that allows for financial assistance of up to ₹50 lakh per patient for treatments deemed necessary at designated Centres of Excellence (CoE).
For the regions of Eastern and North-Eastern India, the designated CoEs include the Regional Institute of Medical Sciences (RIMS) in Imphal, Assam Medical College and Hospital in Dibrugarh and the Institute of Post-Graduate Medical Education and Research (IPGME&R) in Kolkata. The guardians of Monoshree have been advised to have her medical condition assessed at the nearest CoE or another CoE elsewhere in the country.
The Nodal Officer for Rare Diseases at AIIMS, New Delhi, has been tasked with ensuring that necessary assistance is provided to her.
The Union Health Ministry also underlined that any subsequent financial and medical support would be contingent upon recommendations from the Rare Disease Committee based at the respective Centre of Excellence. Alongside the initiative to provide treatment for high-cost rare diseases, the Central Government has introduced a "Digital Portal for Crowd Funding & Voluntary Donations for Patients of Rare Diseases," which aims to facilitate additional financial assistance.
This proactive initiative from the Central Government concerning Monoshree's treatment is being interpreted as a major advancement generating renewed hope for her recovery following Biplab Kumar Deb's intervention with the Central authorities.