NEW DELHI: The Supreme Court stepped in on Thursday to assist an 11-month-old child suffering from a rare disease, spinal muscular atrophy (SMA), after it was revealed that her father, an Air Force corporal, could not afford the treatment, which costs Rs 14.2 crore.
Senior advocate Gopal Sankaranarayanan, representing the child through her mother, informed the bench of Justices Surya Kant and Ujjal Bhuyan that the only known life-saving treatment for SMA is the FDA-approved zolgensma gene therapy. The treatment, which can halt or even reverse the disease if administered before the child turns two, is financially out of reach for the family.
Sankaranarayanan also pointed out a central government notification from May 19, 2022, which promised financial and healthcare assistance for individuals with rare diseases. The bench recognized the gravity of the situation and the parents’ financial inability to fund the treatment. It asked the Union government to respond by January 2, when the court resumes after its winter break, which begins on December 23.
The court requested Attorney General R. Venkataramani to consult with the government and urge them to provide immediate financial assistance under the May 19, 2022, memorandum from the Union Health Ministry’s Rare Disease Cell.
The child’s mother informed the court that, in similar cases, police personnel and teachers had turned to crowdfunding to finance treatment for their children suffering from rare diseases. She noted, however, that the petitioner, being a defense personnel, could not seek crowdfunding without permission or a directive from the Ministry of Defense.
She also explained that her daughter was quickly approaching the critical age for zolgensma administration, after which the treatment’s effectiveness would drastically decrease, potentially leading to fatal consequences. She argued that the government’s failure to provide timely financial support violated the child’s right to equality under Article 14 of the Constitution, as it denied her access to life-saving treatment available to others in similar circumstances.
