SC seeks dedicated funding framework for costly treatment of SMA patients

Parmod Kumar

New Delhi, Oct 8 (UNI) The Supreme Court on Thursday called for a permanent financial support mechanism for patients suffering from Spinal Muscular Atrophy (SMA), a rare genetic disorder, observing that access to prohibitively expensive treatment should not be left to occasional charity or ad hoc government assistance.

A bench comprising Chief Justice Surya Kant, Justices Joymalya Bagchi and V Mohana asked senior advocate and amicus curiae Aparajita Singh to prepare a comprehensive proposal for the creation of a dedicated corpus that could receive regular contributions and provide sustained assistance to patients in need. The bench emphasised that what was required was not a one-time arrangement but a continuing and dependable system capable of responding to the recurring financial burden faced by families of SMA patients.

The proposed framework is expected to examine possible contributions from Corporate Social Responsibility initiatives, institutional donors, and the Central government. The court also indicated that the fund should operate strictly on a non-profit basis, with the available resources channelled in a manner that maximises benefit to patients.

The proceedings concern the lack of adequate and affordable treatment infrastructure for people living with SMA, which predominantly affects infants and young children, and for which available therapies can cost several crores of rupees. For families confronted with such treatment costs, the absence of a stable support mechanism can make access to therapy uncertain and financially overwhelming. The bench has given the amicus curiae four weeks to place the proposed framework for the dedicated corpus before the court.

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