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Supreme Court moots for SMA patients, seeks proposal for permanent fund
In a significant move to address the crippling financial burden faced by patients suffering from Spinal Muscular Atrophy (SMA), the has mooted the creation of a fund. A three-judge Bench comprising Chief Justice Surya Kant and Justices Joymalya Bagchi and V. Mohana, while hearing proceedings, emphasized that government grants and individual charity are insufficient to cover the exorbitant cost of life-saving therapies for this rare genetic disorder. The Court called for a comprehensive proposal to establish a permanent, institutionalized funding mechanism that would ensure systematic and uninterrupted access to treatment for SMA patients.
The Initiative: From Disability Rights to Systemic Healthcare Gaps
The proceedings originated from a filed by the , an NGO advocating for the rights of SMA patients. Initially, the petition sought regulation of online content that allegedly demeaned persons with disabilities, including those suffering from SMA. The Court had taken strong exception to comedian Samay Raina’s remarks on the show "India's Got Latent," which reportedly mocked the high cost of SMA treatment. The Bench quashed criminal cases against Raina and other comedians—Vipul Goyal, Balraj Ghai, Sonali Thakker, and Nishant Tanwar—after noting their willingness to engage in positive work for disability awareness.
However, the Court recognized that the underlying issue of inadequate treatment and financial support for SMA patients could not be addressed within the narrow confines of the original petition. In September, the Bench directed the Registry to register a separate titled . This shift allowed the Court to take a cohesive and holistic view of the healthcare crisis faced by SMA patients.
The Proposal for a
, appearing for the Cure SMA Foundation, suggested that the Union Government create a specialized corpus to provide financial assistance for SMA treatment. The Court 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 (CSR) initiatives.
During the hearing on , the Bench underscored that further might be required to flesh out the proposal. The Court observed that “preventative as well as post-atrophy treatment is hindered due to lack of adequate and systematic financial support.” This observation highlighted the urgent need for a permanent solution rather than relying on sporadic grants or individual philanthropy.
The Need for a Permanent, Non-Profit Mechanism
Chief Justice Surya Kant articulated the core requirement: “Depending on individual circumstances, CSR 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 Court stressed that any such mechanism must prioritize the optimum utilisation of resources on a strictly to ensure that financial assistance reaches patients directly, without intermediaries siphoning off funds.
This emphasis on a non-profit, is critical. SMA therapies, such as gene replacement therapy (Zolgensma) or nusinersen (Spinraza), can cost several crores of rupees per patient. Without a sustained funding stream, families are often forced into debt or compelled to abandon treatment. The Court’s call for a “regular channel” signals a move away from one-time relief measures toward a structured, long-term healthcare financing framework.
Legal Implications and the
The Supreme Court’s intervention in this matter is grounded in , which guarantees the . Over the years, the Court has expansively interpreted this right to include access to healthcare and medical treatment. In cases like and , the Court has held that the State has a duty to provide adequate medical facilities.
The present case extends this jurisprudence to rare diseases, which often fall through the cracks of public health policy due to their low prevalence and high treatment costs. By mooting a , the Court is effectively nudging the government to create a specialized fund—something akin to a rare disease fund—that can be sustained through CSR contributions, government grants, and automatic deductions. This could set a for other rare diseases, such as Duchenne Muscular Dystrophy or Gaucher’s disease, which also require expensive, lifelong therapies.
Impact on Legal Practice and Public Policy
For legal practitioners, this case underscores the growing role of the judiciary in shaping healthcare policy through . The Court’s willingness to convert a disability-rights petition into a broader systemic healthcare inquiry demonstrates a proactive approach to addressing gaps in policy implementation. Lawyers specializing in medical law, constitutional law, and will find this case instructive on how to frame arguments that bridge individual grievances with systemic reforms.
Additionally, the case highlights the importance of CSR as a tool for social justice. Companies operating in India are required to spend a percentage of their profits on CSR activities. By suggesting that contributions to the SMA corpus could qualify as CSR, the Court is providing a clear avenue for corporate participation in healthcare financing. This may encourage other courts to similar directions in cases involving expensive treatments for rare diseases.
Conclusion
The Supreme Court’s direction to establish a for SMA patients is a landmark step toward ensuring that no patient is denied life-saving treatment due to financial constraints. By calling for a permanent, non-profit funding mechanism that combines CSR contributions and government grants, the Court has laid the groundwork for a sustainable healthcare model. The matter is now pending further hearing, with the Court expected to issue detailed guidelines on the corpus’s structure and administration. For the legal community, this case serves as a powerful reminder of the judiciary’s role in bridging policy gaps and protecting the most vulnerable.
