Supreme Court Mulls Dedicated Corpus For Financial Assistance To Spinal Muscular Atrophy Patients

The Supreme Court today called for suggestions on the creation of a dedicated corpus for providing financial assistance to people suffering from Spinal Muscular Atrophy, a rare genetic disorder. 

A bench of CJI Surya Kant, Justice Joymalya Bagchi and Justice V Mohana was dealing with a suo motu case taken up over lack of adequate and systematic treatment for SMA patients. Senior Advocate Aparajita Singh (appointed as Amicus Curiae) and ASG Anil Kaushik appeared. 

The case is an offshoot of the proceedings related to comedian Samay Raina and others, who were accused by M/s Cure SMA Foundation of making insensitive jokes about Persons with Disabilities (including those suffering from SMA). After certain directions by the Court, the comedians apologized and took steps for making amends. Thereafter, the proceedings were closed and the Court took up the present suo motu case to address the issue of systematic issues in treatment of SMA. 

During today's hearing, the CJI asked the Union and the Amicus to suggest a proposal for establishing a dedicated corpus. The judge expressed that the proposed corpus can include CSR contributions and government grants, but it should be permanent and not incidental in nature. 

"it should not depend on the incidental circumstance that today CSR has come or upon persuasion, the government has released the grant...that should not be the case. But what is the regular channel...a permanent system...kind of an automated nudge to contribution", CJI said. 

The judge underlined that the focus should be more towards optimal utilization of the fund, instead of generating the fund.