11-Month-Old Baby Battles for Life: ₹14 Crore Treatment Sparks Supreme Court Intervention

An 11-month-old baby suffering from Spinal Muscular Atrophy (SMA) Type 1 has approached the Supreme Court seeking financial assistance for a life-saving treatment worth ₹14.2 crore. The parents filed a plea requesting the government to provide funds for Zolgensma gene therapy, the only viable cure for the rare and fatal disease.

The family has argued that increasing the amount is beyond their reach, as time has become critically short for the survival of the baby. Without treatment, the child may not survive beyond two years of age. The Supreme Court has taken a serious view of the issue and issued notices to the central government, Ministry of Defence, Chief of Air Staff, and Army Hospital, asking them to file responses.

Plea Details and Demands

The father of the baby, an Indian Air Force officer, cannot avail of extraneous funds due to defense policies. The plea referred to Articles 14 and 21 of the Constitution, stressing the right to equality before the law and the right to life. It pleaded with the court to direct the government to make funds available for the treatment, hasten the approval of the import of the drug, and permit crowdfunding via Defence Ministry channels.

Supreme Court's Response

Hearing the case, Justices Suryakant and Ujjal Bhuyan termed it a "serious and rare issue." They sought input from the Attorney General and scheduled the next hearing for January 2. Senior advocate Gopal Shankar Narayanan represented the family without charging a fee, emphasizing the urgency of the matter.