The Supreme Court has sought the Central government’s response on a plea seeking immediate financial assistance for the life-saving treatment of an 11-month-old child diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare and severe genetic disorder.
A Bench comprising Justice Surya Kant and Justice Ujjal Bhuyan took note of the family’s inability to afford the exorbitant treatment, which costs approximately ₹14.2 crore. The Bench directed the Centre to explore financial support under existing schemes.
“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 stated.
The plea, filed by the child’s mother, highlighted the urgent need for FDA-approved Zolgensma Gene Therapy, which is capable of halting or reversing the disease if administered within the first two years of life. Without this treatment, the condition leads to progressive paralysis, respiratory failure, and death, often before the age of two.
The family, grappling with financial constraints, has struggled to secure assistance despite numerous appeals to government departments. Additionally, limitations imposed on defense personnel regarding crowdfunding efforts have further complicated their attempts to raise the required amount.
Arguing that the government’s inaction violated the child’s fundamental rights under Articles 14 and 21 of the Constitution, the plea emphasized the government’s obligation to ensure healthcare for Armed Forces personnel and their dependents.
The Court directed the government and other relevant authorities to file their responses by January 2, 2025. This case sheds light on the challenges faced by families of rare disease patients in accessing timely and adequate medical care.
