SC to hear pleas over Rs 50L cap on Centre aid for rare diseases
New Delhi: The Supreme Court on Tuesday decided to examine pleas challenging the Rs 50 lakh cap on Centre’s assistance for treating patients suffering from rare diseases like spinal muscular atrophy (SMA).
A bench comprising Chief Justice Sanjiv Khanna and Justice Sanjay Kumar said the petitions on the cap of Rs 50 lakh Central assistance to treat diseases would be heard by a bench headed by Justice P S Narasimha in the week commencing May 13.
The bench said pharma firm M/s F Hoffmann-La Roche Ltd, which manufactures the SMA drug Risdiplam priced at Rs 6.2 lakh a bottle, had agreed to supply the medicine for free for a year to 24-year-old Seba PA, who hails from Kerala, and suffers from the disorder.
She had previously moved the Kerala High Court, which directed the Centre to provide an additional Rs 18 lakh worth of medicines to Seba beyond its Rs 50 lakh cap.
The top court on February 24 stayed the high court order after taking note of the Centre’s appeal that it couldn’t be compelled to breach the Rs 50 lakh cap and issued notices to the parties. The apex court then took note of the submissions that the treatment costs for a SMA patient could go up to Rs 26 crore and Risdiplam was being sold at much cheaper rates in Pakistan and China.
It sought the views of the drug manufacturer whether it could reduce the price in India as well.
On Tuesday, the bench perused a sealed envelope of the drug manufacturer on pricing in India and said the price of Risdiplam was negotiated by the National Rare Diseases Committee with the company.
