The Supreme Court of India on Dec 19, 2024 stepped in to support an 11-month-old child suffering from spinal muscular atrophy (SMA), a rare and life-threatening disease, after learning that her father, an Air Force corporal, could not afford the exorbitant cost of treatment, estimated at ₹14.2 crore. Senior advocate Gopal Sankaranarayanan, representing the child’s mother in court, highlighted before a bench comprising Justices Surya Kant and Ujjal Bhuyan that the only effective treatment for SMA is Zolgensma, a gene therapy approved by the FDA. This therapy has shown potential to stop or reverse the disease’s progression, but it is most effective when administered within the first two years of life.
Sankaranarayanan emphasized that the treatment’s cost far exceeds the financial capabilities of the child’s parents. He also referred to a government notification dated May 19, 2022, which assures financial and healthcare assistance to individuals diagnosed with rare diseases.
Recognizing the gravity of the situation and the financial limitations of the family, the bench directed the Union government to respond by January 2, after the court’s winter recess beginning on December 23. The court also sought input from Attorney General R. Venkataramani, urging him to obtain specific instructions from the government regarding immediate financial aid in compliance with the rare disease cell’s memorandum.
The child’s mother informed the court that there have been instances of police and teachers resorting to crowdfunding to cover medical costs for rare diseases. However, she pointed out that as a member of the armed forces, her husband is not permitted to initiate crowdfunding efforts without explicit authorization from the Ministry of Defence. She expressed concern over the urgent need for treatment, stating that her daughter is nearing the critical age limit for Zolgensma therapy, beyond which the treatment may lose its effectiveness, posing fatal risks.
She also argued that the government’s inability to provide sufficient financial support violates the constitutional right to equality under Article 14, as it deprives her child of equitable access to life-saving medical treatment available to others in similar circumstances.
