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The Supreme Court (SC) on Thursday called for a permanent funding mechanism to help Spinal Muscular Atrophy (SMA) patients meet the prohibitive cost of treatment, saying their access to life-saving therapies cannot depend on sporadic charity or one-off government grants.
A bench headed by Chief Justice of India Surya Kant, along with Justices Joymalya Bagchi and V Mohana, asked senior advocate and amicus curiae Aparajita Singh to draw up a comprehensive proposal for a dedicated corpus that can receive regular contributions and provide sustained financial assistance to patients. We need a regular channel, a permanent system, CJI Surya Kant observed, stressing the need for an automatic and continuously maintained funding mechanism. The proposed framework is expected to examine funding from Corporate Social Responsibility (CSR) initiatives, institutional donors and the Centre. The apex court said the corpus should be managed on a strictly non-profit basis, with resources directed towards the optimum benefit of patients. The top court is hearing a case relating to the lack of adequate and affordable treatment infrastructure for people living with Spinal Muscular Atrophy (SMA), a rare genetic disorder whose therapies can cost several crores of rupees. In its order, the bench asked Singh to submit a proposal for creating the dedicated corpus. She has been given four weeks to place the framework on record. (ANI)
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