Supreme Court Stays Order on SMA Treatment Funding in India
The Supreme Court has temporarily stayed a Kerala High Court order regarding SMA treatment funding in India. This order directed the Centre to provide additional funds for a patient suffering from spinal muscular atrophy (SMA). Specifically, it mandated the provision of ₹18 lakh worth of medicines. The Centre challenged this order, citing financial constraints.
Background of the Case
Previously, the Kerala High Court instructed that the SMA drug Risdiplam be provided as a one-time measure. This decision aimed to ensure continued treatment for 24-year-old Seba PA. The court made this ruling due to the exorbitant cost of Risdiplam, priced at ₹6.2 lakh per bottle. Patients weighing up to 20 kilograms require one bottle monthly. In contrast, heavier patients may need up to three bottles, making long-term treatment financially unfeasible.
Supreme Court’s Ruling
On February 24, Chief Justice Sanjiv Khanna and Justice Sanjay Kumar issued a notice to the respondents regarding the Centre’s plea. The court stated, “Issue notice returnable in the week commencing April 17, 2025… till the next date of hearing, there will be a stay of the order of the impugned judgment.” Furthermore, the Supreme Court suggested that the government explore funding exceptions on a case-by-case basis. This recommendation acknowledges the financial burden on patients.
Government’s Position
The Centre argued that the high court’s ruling does not set a binding precedent. It expressed concerns that granting individual exceptions could lead to an unsustainable financial burden. Currently, over 3,000 patients across India face varying circumstances. The government policy caps treatment funding at ₹50 lakh for all patients, regardless of their financial situation.
Advocacy for Change
Senior advocate Anand Grover, representing Seba, argued that the government should negotiate with the drug manufacturer to reduce the cost of SMA treatment. He pointed out that countries like China and Pakistan have successfully negotiated lower prices for SMA treatment. The bench acknowledged the complexities involved. It suggested that international ramifications might deter the Indian government from pursuing similar negotiations.
Conclusion
The Supreme Court’s stay on the Kerala High Court order raises important questions about SMA treatment funding in India and the funding of rare disease treatments overall. As the case progresses, stakeholders will closely monitor the implications for patients suffering from spinal muscular atrophy and other rare disorders. Therefore, the government is encouraged to explore viable solutions to ensure that patients receive the necessary treatment without facing financial hardship.
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