Supreme Court Seeks Permanent Funding Model for Spinal Muscular Atrophy Treatment

The Supreme Court asked for proposals for a lasting financial-assistance mechanism for patients with Spinal Muscular Atrophy, a rare genetic condition that can require costly treatment.

Background

The issue arose in a suo motu proceeding examining gaps in systematic treatment after an earlier disability-related matter had been closed. The Court is considering support that does not depend on occasional donations.

Legal issue

The Bench asked how a dedicated corpus could combine corporate social responsibility contributions with government grants while ensuring predictable availability and effective use of funds.

Court’s approach

Chief Justice Surya Kant stressed that regular funding and optimal deployment are more important than an ad hoc collection drive. Amicus Aparajita Singh and Additional Solicitor General Anil Kaushik participated in the discussion.

What follows

The Union and the amicus are to suggest a workable institutional design. No final corpus or funding obligation has yet been created by the Court.