The central government has informed the Kerala High Court that there are over 3,000 registered patients with Group III rare diseases across 12 Centres of Excellence (CoE) in the country, with treatment costs estimated to range between ₹6,400 crore and ₹34,000 crore annually.
The submission was made by Shobhit Gupta, Under Secretary at the Department of Health and Family Welfare, in response to a contempt petition filed by a 25-year-old Ernakulam woman suffering from Type 2 Spinal Muscular Atrophy. The petitioner, who was previously treated at SAT Hospital in Thiruvananthapuram under the National Policy for Rare Diseases (NPRD), 2021, had reached the policy’s financial cap of ₹50 lakh, disrupting her treatment.
Following a high court directive to continue her treatment despite the cap, non-compliance led to contempt proceedings. In its affidavit, the Centre argued that extending financial assistance beyond ₹50 lakh is not viable under the current policy. It noted that Group III rare diseases require lifelong therapies, costing ₹50 lakh to ₹8 crore per patient annually, and that the growing identification of rare diseases and new gene therapies will further strain public healthcare resources.
To address this gap, the government has suggested crowdfunding initiatives and emphasized that health is a state subject, urging state governments to support rare disease treatment. The affidavit also stated that the high court’s directive to continue treatment beyond the policy cap conflicts with the government’s authority over policymaking.
As reported by economictimes, the Centre has requested the dismissal of contempt proceedings, while Justice V.G. Arun has reserved the order on the matter.