Supreme Court orders permanent fund to finance treatment for SMA patients

During a Thursday hearing, the Supreme Court examined the systemic gaps in treatment for spinal muscular atrophy, a rare genetic disease requiring costly, long-term therapy. Chief Justice Surya Kant, together with Justices Joymalya Bagchi and V Mohana, directed the Union government and amicus curiae Aparajita Singh to prepare a plan for a permanent financial corpus. The proposal should channel corporate social responsibility contributions and state grants into a stable fund.

Additional Solicitor General Anil Kaushik represented the government in the proceedings. The court stressed that the fund must be managed efficiently to benefit patients, not merely to raise money, and that a regular inflow of resources is essential to avoid reliance on sporadic donations. This initiative follows earlier directives for comedians, including Samay Raina, to raise awareness and funds for disability causes.