The Supreme Court on Thursday sought proposals for setting up a permanent financial corpus to support patients suffering from spinal muscular atrophy (SMA), a rare genetic disorder that often requires expensive and prolonged treatment.
A three-judge Bench headed by Chief Justice of India Surya Kant and comprising Justices Joymalya Bagchi and V Mohana was hearing a suo motu matter concerning the absence of adequate and systematic treatment facilities for patients with SMA.
Senior advocate Aparajita Singh, who has been appointed as amicus curiae in the proceedings, and Additional Solicitor General Anil Kaushik appeared before the Bench.
The proceedings stem from an earlier case involving comedian Samay Raina and others, following allegations by Cure SMA Foundation that certain remarks made during comedy performances were insensitive towards people with disabilities, including those affected by SMA. The Supreme Court had subsequently directed the comedians to undertake initiatives to raise awareness and funds for people with disabilities. They later tendered apologies and took steps in compliance with the court’s directions.
After closing those proceedings, the court initiated the present suo motu case to examine the broader systemic concerns surrounding the treatment and financial support available to SMA patients.
During Thursday’s hearing, the Bench asked the Union government and the amicus curiae to work out a proposal for establishing a dedicated corpus for SMA patients.
The CJI said the proposed mechanism could receive contributions through corporate social responsibility (CSR) initiatives as well as government grants. However, he stressed that the funding mechanism should be institutionalised and operate on a permanent basis rather than depend on sporadic donations or individual government interventions.
The court indicated that there should be a regular mechanism that would ensure contributions flow into the corpus without requiring repeated efforts to mobilise funds.
The Chief Justice said the greater challenge would be ensuring that the corpus was utilised efficiently for the benefit of patients rather than merely focusing on raising money.
The court’s observations came against the backdrop of the high cost of therapies required by SMA patients and the need for a more predictable system of financial assistance for those requiring treatment.
