New Delhi,August 21(HS): At the Rare Diseases Conference 2025 in New Delhi, Union Pharmaceuticals Secretary Amit Agrawal underscored Prime Minister Narendra Modi’s call for India to pioneer affordable medicines for global welfare, placing rare diseases at the heart of the nation’s pharma innovation agenda.

Addressing the gathering, Agrawal stressed that though individually uncommon, rare diseases collectively impact 5% of the population, making them a major public health issue. He urged policymakers, industry, academia, and civil society to approach the challenge through a lens of inclusion, in line with the PM’s vision of supporting Divyangjan.

Highlighting recent breakthroughs, Agrawal revealed that the PLI Scheme for Pharmaceuticals has driven dramatic price reductions in rare disease treatments. Eliglustat for Gaucher’s Disease—once costing families up to ₹3.6 crore a year—can now be accessed for just ₹3–6 lakh annually. Other therapies brought under the scheme include Trientine (Wilson’s Disease), Nitisinone (Tyrosinemia Type 1), and Cannabidiol (Lennox–Gastaut Syndrome).

Calling on corporates to cover rare disease patients in their CSR and patient assistance programmes, Agrawal urged stakeholder collaboration on regulatory pathways, funding models, and inclusive policy design.

“India, long hailed as the world’s pharmacy, must now ensure the benefits of science and innovation truly reach the rarest of patients,” he concluded, signaling upcoming policy shifts under a new research and innovation scheme prioritizing rare diseases and orphan drugs.

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Hindusthan Samachar / Jun Sarkar