The Supreme Court has stepped into the life-or-death battle of an 11-month-old battling Spinal Muscular Atrophy (SMA) Type 1, urging the government to explore immediate financial assistance for her treatment—a staggering ₹14.2 crore solution lying just out of reach for the family.
A judicial bench has requested the Attorney General to provide specific guidance on financial support under the Ministry of Health and Family Welfare’s Rare Diseases Cell framework. The child’s mother filed the petition, emphasizing the urgency of securing Zolgensma Gene Therapy, an FDA-approved treatment capable of halting or reversing the disorder if administered within the critical two-year window.
Without intervention, the genetic condition progresses rapidly, leading to paralysis, respiratory failure, and often death before the age of two. For the child of an Indian Air Force official, this challenge is exacerbated by financial barriers. Despite multiple appeals to government departments, no assistance has been granted, leaving the family reliant on sparse options.
The plea argues that this inaction breaches constitutional guarantees of equality and protection of life and violates the government’s duty to ensure adequate healthcare for Armed Forces personnel and their dependents. Complicating the matter, regulatory restrictions have blocked the family from raising funds through defense-community crowdfunding initiatives.
With the clock ticking, the Court has directed the Centre to file its response by January 2, 2025, while raising critical questions about the nation’s commitment to healthcare equity and support for its military families.
