The Supreme Court is set to examine a plea seeking medical help for a 11-month-old child suffering from a rare, life-threatening medical condition..A Bench of Justice Surya Kant and Justice Ujjal Bhuyan took note of her family's inability to pay for her treatment which costs approximately ₹14.2 crore and sought the response of the Central government on providing immediate financial assistance to the family. "The learned Attorney General for India is requested to have specific instructions for providing immediate financial assistance as per the terms and conditions contained in the notification/Office Memorandum File No.W-11037/40/2022-Grants (RD) dated 19.05.2022 issued by the Rare Diseases Cell, Ministry of Health and Family Welfare, Government of India," the Court ordered.The Court made the intervention on the plea moved the child's mother seeking directions for release of the amount required for her daughter's treatment. .As per the plea, the 11-month-old child, who is the daughter of an Indian Air Force official, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic disorder. Without timely and appropriate treatment, the condition leads to progressive paralysis and respiratory failure leading to death, often within the first two years of life, the plea stated. The Court was told that the only known life-saving treatment for SMA is the Food and Drug Administration (FDA)-approved Zolgensma Gene Therapy which can halt or reverse the disease if administered within the first two years of life.However, the treatment costs an exorbitant amount of ₹14.2 crores, which is far beyond the financial capacity of the ailing child's family, it was submitted..The Court was also informed that child's parents have made numerous attempts to seek assistance from relevant government departments but received no support.The government’s denial of financial support violates the child’s fundamental rights under Articles 14 (equality before law) and 21 (protection of life and personal liberty) of the Constitution of India as well as the government’s duty to provide adequate healthcare to Armed Forces personnel and their dependents, the plea argued. It was also highlighted that despite efforts to raise funds, including potential contributions from willing individuals and welfare organizations, the family was unable to seek crowd-funding from defense personnel without explicit permission or a circular from the relevant department."This limitation has further hindered the efforts to secure the funds required for this time-sensitive treatment, which must be imported with approval from the Government of India," the plea stated..The Court asked the Central government and other authorities to file their response to the plea by January 2, 2025. .Senior Advocate Gopal Sankaranarayan with advocates Amish Aggarwala (AoR), Kavish Aggarwala, Shubham Kumar, Ritesh Singh, Aditi Gupta, Manju Aggarwala, Suraj Pathak, Kumud Jha and Pradyut Kashyap appeared for the petitioner..[Read Order]
