Supreme Court of India seeks permanent funding for SMA patients

The Supreme Court of India has called for the establishment of a permanent funding mechanism to assist patients suffering from Spinal Muscular Atrophy (SMA). A bench led by Chief Justice of India Surya Kant emphasized that access to life-saving therapies for this rare genetic disorder should not rely on sporadic charity or one-off government grants.

Amicus curiae Aparajita Singh has been tasked with drafting a comprehensive proposal for a dedicated corpus. This fund is intended to receive regular contributions to provide sustained financial assistance for treatments that can cost several crores of rupees. The proposed framework will explore funding sources including Corporate Social Responsibility (CSR) initiatives, institutional donors, and the Central Government. The court specified that the corpus must be managed on a strictly non-profit basis to ensure resources directly benefit the patients.