PLI scheme brings down cost of rare disease treatment from crores to lakhs

Highlighting significant policy measures, the Secretary informed that Rare Diseases were included as a focus area under the Production Linked Incentive (PLI) Scheme for Pharmaceuticals. As a result, eight drugs for rare conditions have been supported, including Eliglustat for Gaucher’s Disease, where the cost of treatment has come down from ₹1.8–3.6 crore annually to ₹3–6 lakh. Other supported treatments include Trientine for Wilson’s Disease, Nitisinone for Tyrosinemia Type 1 and Cannabidiol for Lennox–Gastaut Syndrome, among others. He noted that such tangible reductions in treatment costs demonstrate the transformative potential of targeted policy interventions.

The Secretary also encouraged corporates to factor in rare disease patients under their CSR initiatives and patient assistance programmes, considering the heavy financial and emotional burden on affected families. He urged all stakeholders to evaluate their policies, regulations, funding models and programme designs through the lens of inclusivity. He suggested exploring special pathways or regulatory exemptions to address the unique needs of the rare disease community.

Shri Agrawal concluded by noting that he looks forward to recommendations and policy insights from the day’s deliberations and expressed keen interest in learning from global best practices to strengthen India’s policy framework for rare diseases.