SC Calls for Permanent Funding for SMA Patients
The Supreme Court calls for a permanent funding mechanism to help SMA patients afford life-saving, high-cost therapies.
The Supreme Court of India has stepped in to address the crushing financial burden faced by patients suffering from Spinal Muscular Atrophy (SMA). In a significant move on Thursday, the apex court emphasized that access to life-saving therapies for this rare genetic disorder should not rely on unpredictable charity or occasional government grants.
A Need for a Sustainable Financial System
A bench led by Chief Justice of India Surya Kant, alongside Justices Joymalya Bagchi and V Mohana, highlighted the inadequacy of the current sporadic support system. The court stressed that patients facing such critical medical needs require a reliable and continuous financial lifeline.
“We need a regular channel, a permanent system,” Chief Justice Surya Kant observed during the proceedings. The court's focus is to ensure that the astronomical costs of treatment do not become a barrier to survival for those afflicted by the condition.
Proposed Corpus and Management Framework
To solve this crisis, the court has tasked senior advocate and amicus curiae Aparajita Singh with designing a comprehensive proposal for a dedicated fund. This proposed corpus is intended to receive regular contributions to provide sustained financial assistance to SMA patients.
The framework under consideration aims to explore various funding avenues, including:
- Corporate Social Responsibility (CSR) initiatives from various companies.
- Institutional donors who can provide long-term support.
- The Central Government for direct budgetary assistance.
The Supreme Court has explicitly stated that this fund must be managed on a strictly non-profit basis. Every resource collected must be directed toward the maximum possible benefit of the patients undergoing treatment.
The High Cost of Survival
The legal intervention comes as the court examines the lack of affordable treatment infrastructure for SMA. Spinal Muscular Atrophy is a rare genetic disorder that requires specialized therapies, the costs of which can escalate to several crores of rupees, making it impossible for most families to afford without external help.
The amicus curiae, Aparajita Singh, has been granted four weeks to submit the formal framework for this dedicated corpus to the court.