New Delhi, Feb 26: The Supreme Court has temporarily suspended a Kerala High Court order that directed the Centre to supply additional medicines worth Rs 18 lakh to a patient diagnosed with spinal muscular atrophy, exceeding its limit of Rs 50 lakh.
On February 24, a bench headed by Chief Justice Sanjiv Khanna and Justice Sanjay Kumar issued a notice to the respondents in response to the Centre’s appeal.
“Issue notice returnable in the week commencing April 17, 2025… until the next hearing date, the order from the contested judgment will remain stayed.” Spinal muscular atrophy (SMA) is a rare genetic condition marked by progressive muscle weakness and deterioration, impacting the nerve cells that control voluntary muscle movement.
According to policy, the Centre allocates up to Rs 50 lakh for treatment to patients in need.
On February 6, the high court mandated that the SMA medication Risdiplam should be dispensed as a one-time measure to secure ongoing treatment for 24-year-old Seba PA until the issue of its high cost was resolved by a single-judge bench — a process anticipated to take a minimum of a month.
Seba’s plea in the high court underscored the high price of Risdiplam, which is Rs 6.2 lakh per bottle.
Patients weighing up to 20 kilograms require one bottle monthly, while heavier patients may need as many as three bottles, rendering long-term treatment economically impractical.
The Centre contended that although the high court indicated its ruling was not an obligatory precedent, granting individual exceptions might create a default precedent.
“There are over 3,000 patients across India with various situations, and treating each case as unique could impose an unsustainable financial burden,” they added.
The government’s attorney noted that the established policy enforces a strict cap of Rs 50 lakh for all patients, irrespective of financial resources.
Senior advocate Anand Grover, representing Seba, argued that the government could take actions to lower the cost of SMA treatment by either negotiating with the drug manufacturer or utilizing provisions under the Patents Act, 1970.
Grover mentioned that countries like China and Pakistan had successfully negotiated lower prices for SMA treatment and questioned why India had not pursued similar negotiations.
The bench suggested that the Indian government’s reluctance might stem from potential “international ramifications”.
“Why would the Indian government not be interested? They would certainly be interested. It’s easy to criticize. They probably have made considerable efforts to negotiate lower prices,” the bench remarked.
The bench urged the Centre to look into the possibility of approving expenditures exceeding Rs 50 lakh on a case-by-case basis. (Agencies)
