In a heartfelt appeal, over 220 parents and caregivers of children with rare diseases such as spinal muscular atrophy (SMA) and cystic fibrosis have written to Chief Justice of India Sanjiv Khanna, seeking judicial intervention to ensure access to life-saving drugs at affordable prices.

Key Highlights
Supreme Court urged to take suo motu cognizance

• Caregivers appealed to the CJI to address long-pending legal cases related to rare disease treatments.

• They requested action on patent disputes, affordability, and availability of key medicines.

Demand for compulsory licensing and local production

• The letter calls for enforcement of Indian patent law provisions (Sections 83, 84, 92, 100) to promote generic alternatives.

• Parents allege current drug prices are unaffordable, even with the Rs 50 lakh support under NPRD.

Delayed court hearings and legal roadblocks

• Despite progressive High Court rulings, Supreme Court appeals and injunctions have prevented relief.

• Families highlighted repeated delays in hearings, causing distress and avoidable loss of life.

Concerns raised over Risdiplam costs

• Swiss firm Roche’s SMA drug, Risdiplam, costs ₹6 lakh per bottle, amounting to ₹70 lakh annually per patient.

• Experts claim it could be produced for as little as ₹3,000 a year if generic production were allowed.

Recent Delhi HC verdict offers some relief
The Delhi High Court recently rejected Roche’s interim injunction plea against Natco Pharma, allowing potential generic alternatives for Risdiplam (Evrysdi).

Statements from Leaders or Officials
 Chitali Rao, Senior Legal and Policy Analyst, Third World Network: “Roche's monopoly until 2035 is keeping life-saving treatment out of reach. India has the capacity to produce these drugs affordably. It’s time the judiciary stepped in to balance patent rights with the right to life.”As multiple cases remain pending, families hope for swift judicial intervention to fast-track compulsory licensing and ensure local production. The plea reflects growing frustration with legal delays and a demand for prioritising patients’ rights over pharmaceutical monopolies.