Supreme Court seeks Centre's view on creation of corpus fund for treatment of SMA patients

New Delhi: The Supreme Court on Thursday mulled setting up a corpus fund to treat people suffering from Spinal Muscular Atrophy (SMA), a rare and debilitating genetic disorder.

A bench of Chief Justice Surya Kant and Justices Joymalya Bagchi and V Mohana, while hearing a suo motu case, pointed out that individual charity and ad hoc government grants are insufficient and what is needed is a permanent, regularised channel to finance life-saving therapies.

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"Depending on individual circumstances, corporate social responsibility (CSR) contributions may come forward, or the government may release funds. 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," CJI Kant said.

The bench said the focus should not just be on the creation of the fund, but also on its optimum use.

The bench asked senior advocate Aprajita Singh, appointed amicus curiae, to submit a comprehensive proposal exploring avenues to generate and sustain the corpus, including contributions from corporate social responsibility initiatives, institutional donors, and the central government.

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It also asked the Centre, represented by Additional Solicitor General Anil Kaushik, to file an affidavit on the corpus fund question.

The matter came to the court's notice when NGO SMA Cure Foundation approached it, flagging jokes made by India's Got Latent host Samay Raina and other social media influencers about people with disabilities.

On August 14, the top court quashed criminal proceedings against Raina and four others for their remarks about people with disabilities and appreciated their efforts in spreading awareness and promoting the dignity of such people.

Besides Raina, the apex court quashed the FIRs and criminal proceedings against Vipul Goyal, Balraj Paramjeet Singh Ghai, Sonali Thakkar, and Nishant Jagdish Tanwar.

It appreciated their organising a chess tournament in March for persons with disabilities and helping raise awareness about organisations working for such people.

Taking note of the expensive treatment of the disease, the bench ordered the registration of the suo motu case for creating a mechanism for corpus funds for the patients.