NEW DELHI: An unusual plea—given that the medication used to treat spinal muscular atrophy (SMA) costs less in both Pakistan and China—prompted the Supreme Court to request responses from the central government and Roche, the international pharmaceutical company producing the drug. The court aimed to understand why such treatments cannot also be affordably priced to aid patients with this uncommon condition.
For Seba, aged 24 and hailing from Kerala, lawyer Anand Grover addressed a bench comprising Chief Justice of India Sanjiv Khanna along with Justices Sanjay Kumar and K V Viswanathan. He highlighted that Hoffmann-La Roche, the company behind the patent-holding oral medication Risdiplam (Evrysdi), sells this drug at lower prices in both Pakistan and China. "Since SMA patients have access to the medication at reduced costs in Pakistan and China due to government interventions in these nations, why isn’t the Indian government negotiating with the pharmaceutical firm to decrease the high pricing? Alternatively, could they consider producing it as a generic version to make treatments more affordable?" he questioned.
In India, a bottle of Risdiplam is priced at Rs 6.2 lakh, whereas in Pakistan it costs Rs 41,000 per bottle and in China, Rs 44,692. On August 17, 2023, TOI reported that Roche’s medication for rare diseases was sold at prices up to 15 times higher in India than in neighboring nations. The court directed Roche to submit their response and requested the Center to present its stance on reducing the cost of this drug used to treat SMA in India. Recognizing the critical nature of this issue, where swift action could potentially save numerous SMA patients from imminent fatality, the court scheduled the matter for continued hearings the following week.