SC to hear pleas over ₹50 lakh cap on Centre aid for rare diseases
By : Sandhya
Delhi, On Tuesday, the Supreme Court agreed to consider appeals against the ₹50 lakh cap on the amount of money that the Center might spend on treating patients with uncommon conditions like spinal muscular atrophy. According to a bench made up of Chief Justice Sanjiv Khanna and Justice Sanjay Kumar, a bench led by Justice P S Narasimha would hear the petitions regarding the ₹50 lakh restriction on central support for disease treatment in the week starting May 13.
The 24-year-old Seba PA, who is from Kerala and has the disease, will receive free medication for a year from pharmaceutical company M/s F Hoffmann-La Roche Ltd, which makes the SMA medication Risdiplam, which costs ₹6.2 lakh each bottle, according to the bench.
She had earlier petitioned the Kerala High Court, which ordered the Center to give Seba an extra ₹18 lakh in medications, above the ₹50 lakh threshold. After considering the Center's argument that it could not be forced to violate the ₹50 lakh cap, the top court issued notices to the parties and, on February 24, stayed the high court ruling.