The Supreme Court on Thursday called for a permanent, dedicated fund to support treatment for patients with Spinal Muscular Atrophy (SMA), saying ad hoc government grants and individual charity are insufficient to finance therapies for the rare genetic disorder.
A three-judge Bench headed by Chief Justice of India Surya Kant suggested exploring contributions through corporate social responsibility (CSR) initiatives and government grants to establish and sustain the corpus.
The Bench, also comprising Justices Joymalya Bagchi and V. Mohana, stressed the need for a regular and institutionalised funding mechanism to finance life-saving therapies for SMA patients, who often require treatment costing crores of rupees.
“Depending on individual circumstances, CSR contributions may come forward, or the government may release grants. But what we need is a regular channel, permanent system. There should be a mechanism for automatic contributions and a regular fund that is maintained,” the CJI observed.
The court also said the fund should prioritise the optimum use of resources strictly on a non-profit basis, ensuring that financial assistance reaches patients directly.
The apex court was hearing suo motu proceedings initiated to address the lack of adequate, systematic and affordable healthcare infrastructure for SMA patients.
During the hearing, the Bench asked Senior Advocate and Amicus Curiae Aparajita Singh to submit a comprehensive proposal for generating and sustaining the corpus, including through CSR initiatives, institutional donors and the Central government.
When Singh informed the court that an affidavit had already been filed and would be placed on record, CJI Kant clarified that the primary objective was to institutionalise a permanent and regular funding stream rather than rely on sporadic charity or ad hoc grants.
The court said fund generation should be the priority, followed by its optimum, non-profit utilisation strictly for patient welfare. The Chief Justice asked the amicus to devise an automated and self-sustaining financial framework, to which Singh said work was underway.
While dictating its order, the Bench said, “These petitions concern the issue of creation of a dedicated corpus account to provide financial aid and assistance to persons suffering from SMA. We request amicus curiae Aparajita Singh to submit a proposal regarding creation of such fund.”
The court appointed Pragya Barsaiyan as co-amicus and allowed the Cure SMA Foundation to intervene in the matter.