New Delhi: Supreme Court on Thursday rushed to the aid of a 11-month-old child afflicted with a rare disease – spinal muscular atrophy (SMA) – on finding that her father, working as a corporal in the Air Force, is unable to arrange funds for her treatment which would cost Rs 14.2 crore.
Senior advocate Gopal Sankaranarayanan, appearing for the child who moved the court through her mother, informed a bench of Justices Surya Kant and Ujjal Bhuyan that the only known life-saving treatment for SMA is the FDA-approved zolgensma gene therapy that has demonstrated the potential to halt or reverse the disease if administered within the first two years of life.
However, he said the treatment cost, approximately Rs 14.2 crore, is far beyond the financial capacity of the child’s parents, and drew the court’s attention to the central govt’s notification of May 19, 2022, promising financial and healthcare assistance to persons afflicted with rare diseases.
The bench acknowledged the seriousness of the issue and the lack of financial wherewithal of the child’s parents, and sought the response of the Union govt by Jan 2, the day the court resumes judicial business after a 10-day winter break, starting from Dec 23.
It requested attorney general R Venkataramani to take specific instruction with reference to the child afflicted with SMA and impress upon the govt to provide immediate financial assistance as per the May 19, 2022, office memorandum issued by the rare disease cell of the Union health ministry.
Child’s mother told court that there had been instances of police personnel and teachers who had resorted to crowdfunding for treatment of their children afflicted with rare diseases. “The petitioner can’t seek crowdfunding from defence personnel without permission or a circular from the defence ministry,” she said.
The mother said her daughter is fast approaching critical age limit for administration of zolgensma, beyond which the treatment’s effectiveness is significantly reduced, which may have fatal consequences.
She alleged “govt’s failure to provide adequate financial support for treatment violated the right to equality under Article 14 of the Constitution, as the child is being denied equal access to life-saving treatment available to others in similar circumstances.”
