Four weeks to design a fund: the Supreme Court has asked its amici to propose a dedicated corpus for Spinal Muscular Atrophy patients, saying individual charity and ad hoc government grants cannot sustain care for a disease whose treatment can run into crores of rupees.
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New Delhi: Hearing suo motu proceedings on the lack of adequate, affordable treatment and healthcare infrastructure for patients with Spinal Muscular Atrophy (SMA), a rare genetic disorder, the Supreme Court on Thursday (October 8, 2026) mooted a dedicated corpus to finance their treatment [Suo Motu Proceedings on Treatment and Healthcare Infrastructure for Spinal Muscular Atrophy Patients].
The matter was heard by a Bench of Chief Justice of India Surya Kant, Justice Joymalya Bagchi and Justice V. Mohana.
The task given to the amici
Senior Advocate Aparajita Singh, the amicus curiae, was asked to submit a proposal on how such a fund can be generated and sustained, including through Corporate Social Responsibility (CSR) contributions, institutional donors and the Central government. Counsel told the Court that an affidavit had already been filed.
Advocate Pragya Barsaiyan was appointed co-amicus, and the two were directed to file the proposal within four weeks.
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What the Bench said
The proceedings are about the cost and availability of SMA treatment, which can run to crores of rupees per patient and is out of reach for most families. The Bench indicated that individual charity and one-off government grants were not enough.
What was needed, CJI Surya Kant said, was “a regular channel, a permanent system”, with contributions flowing in automatically and a fund that is maintained over time. The Court also stressed that money in such a corpus should be used on a non-profit basis, for direct support to patients.
Foundation joins the case
An intervention application filed by the Cure SMA Foundation was also allowed.
Why the order matters
SMA drugs and therapies are among the costliest in the world, and families have so far depended on crowdfunding, court-directed assistance and case-by-case government support. By pressing for a standing corpus with a regular source of funds, the Court has signalled that it is looking for a structural, rather than episodic, answer. No corpus has been created yet; the shape of the fund, its sources and its governance will depend on the proposal the amici file and on the Court’s further directions.
Case Title: Suo Motu Proceedings on Treatment and Healthcare Infrastructure for Spinal Muscular Atrophy Patients
Bench: CJI Surya Kant, Justice Joymalya Bagchi and Justice V. Mohana, Supreme Court of India
Date of Hearing: October 8, 2026
Appearances: Senior Advocate Aparajita Singh (Amicus Curiae); Advocate Pragya Barsaiyan (Co-Amicus Curiae)