The Supreme Court on Thursday called for a comprehensive proposal to establish a dedicated corpus fund aimed at providing financial assistance and systematic treatment to patients suffering from Spinal Muscular Atrophy (SMA), a rare and debilitating genetic disorder.
A Bench led by Chief Justice of India (CJI) Surya Kant, Justice Joymalya Bagchi and Justice V Mohana stressed that individual charity and ad-hoc government grants are insufficient, and there is a pressing need for a permanent, regularised channel to finance life-saving therapies.
"Depending on individual circumstances, corporate social responsibility (CSR) contributions may come forward, or the government may release grants. But what we need is a regular channel, a permanent system. There should be a mechanism for automatic contributions and a regular fund that is maintained," the CJI observed.
The Court further underscored that any such mechanism must prioritise the optimum utilisation of resources on a strictly non-profit basis to ensure direct patient support.
The top court was hearing suo motu proceedings initiated by it to address the lack of adequate, systematic, and affordable healthcare infrastructure for SMA patients, who often require treatments running into crores of rupees.
During the hearing, the Bench called upon Senior Advocate and Amicus Curiae Aparajita Singh to submit a comprehensive proposal exploring avenues to generate and sustain the corpus, including contributions from Corporate Social Responsibility (CSR) initiatives, institutional donors, and the Central government.
When Singh submitted that an affidavit had already been filed and would be placed on record, CJI Kant underscored that the primary objective must be to institutionalise a permanent, regular funding stream rather than relying on sporadic individual charity or ad-hoc government grants.
The Court underscored that the first priority must be fund generation followed by its optimum, non-profit utilisation strictly for patient welfare. The Chief Justice urged the amicus to devise an automated, self-sustaining financial framework, to which Singh affirmed that work on the proposal was actively underway.
While dictating the order, the Bench noted:
"These petitions concern the issue of creation of a dedicated corpus account to provide financial aid and assistance to persons suffering from Spinal Muscular Atrophy. We request amicus curiae Aparajita Singh to submit a proposal regarding the creation of such a fund."
Following the Amicus Curiae's submission that advocate Pragya Barsaiyan had contributed significantly to the proceedings, the Court appointed Barsian as co-amicus in the matter and directed the duo to place the proposal on record within four weeks.
The Court also allowed an intervention application moved by the Cure SMA Foundation.
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