सुप्रीम कोर्ट ने SMA रोगियों के इलाज के लिए समर्पित फंड की मांग की, व्यवस्थित वित्तीय सहायता की जरूरत पर बल दिया

Supreme Court Takes Up Suo Motu Case On Treatment Gaps Faced By SMA Patients, Moots Dedicated Corpus

CJI Surya Kant-led Bench says lack of adequate and systematic financial support is hindering preventive and post-atrophy treatment of SMA patients.

The Supreme Court has mooted the creation of a dedicated fund or corpus for patients suffering from Spinal Muscular Atrophy (SMA), observing that inadequate and systematic financial support is hampering access to treatment for the rare genetic disorder.

A Bench comprising Chief Justice of India Surya Kant and Justices Joymalya Bagchi and V. Mohana had recently initiated a suo motu writ petition titled “In Re: Lack of Adequate and Systematic Treatment for SMA Patients and Other Ancillary Issues.”

The direction had come while the Court was disposing of proceedings arising from petitions concerning online content allegedly demeaning persons with disabilities, including those suffering from SMA.

Senior Advocate Aparajita Singh, appearing for Cure SMA Foundation of India, had earlier suggested that a dedicated corpus be created by the Union Government to provide financial assistance for SMA patients. The Court had described the suggestion as appropriate and indicated that, if such a fund already existed, it should be widely publicised to encourage contributions from corporate entities and individuals, including through Corporate Social Responsibility initiatives. Indian Kanoon

Court today observed that further judicial intervention might be required on the proposal for a specialised corpus. The Court noted that “preventative as well as post-atrophy treatment is hindered due to lack of adequate and systematic financial support.”

"Depending on individual circumstances, corporate social responsibility contributions may come forward, or the government may release grants. 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," the CJI observed.

The bench today further underscored that any such mechanism must prioritise the optimum utilisation of resources on a strictly non-profit basis to ensure direct patient support.

In September, the court was told that further hearing and judicial intervention may be required and a specialised corpus of funds be created by the Union of India for SMA patients.

Senior Advocate Aparajita Singh had pointed out that preventative as well as post-atrophy treatment is hindered due to lack of adequate and systematic financial support.

"We believe that the genesis of these Writ Petitions would not be the suitable foundation for such consideration. It would, rather, be in the interest of justice and all stakeholders that a dedicated case to consider this prayer be registered, while closing the Civil Writ Petition....The Registry is directed to initiate a Suo-Moto Writ Petition titled “In Re: Lack of Adequate and Systematic Treatment for SMA Patients and Other Ancillary Issues” to enable this Court to take a cohesive view of the matter," the court had ordered.

The court had in September quashed the criminal cases initiated against stand up comic and YouTuber Samay Raina, Vipul Goyal, Balraj Ghai, Sonali Thakker and Nishant Tanwar over their insensitive remarks made on the show India's Got Latent about persons with disabilities.

"Once there are genuine efforts positive results are bound to be there. They are very bright youngsters. If they have started working in positive direction, there will be positive output," court observed while proceeding to quash criminal cases filed against the comedians.

The orginal petition was filed by NGO Cure SMA Foundation seeking regulation of online content & action against Comedian Samay Raina & others for allegedly mocking persons with disabilities.

Court had taken strong exception to comedian Samay Raina’s alleged mockery of the exorbitant treatment cost for spinal muscular atrophy (SMA), stating that such ridicule could not be passed off as humour or satire when it demeans persons with disabilities.

Case Title: IN RE : LACK OF ADEQUATE AND SYSTEMATIC TREATMENT FOR SMA PATIENTS AND OTHER ANCILLARY ISSUES Vs

Hearing Date: October 8, 2026

Bench: CJI Surya Kant, Justice Bagchi and Justice Mohana

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