New Delhi: Shri Amit Agrawal, Secretary of the Department of Pharmaceuticals, Ministry of Chemicals & Fertilizers, delivered a special address at the inaugural session of the Rare Diseases Conference 2025 held at the FICCI Auditorium. The conference, themed “Making Rare Care Possible: Availability, Accessibility, Awareness,” brought together stakeholders to address the increasing significance of rare diseases in India’s public health landscape.
Addressing Rare Diseases as a Major Public Health Challenge
Shri Agrawal emphasized that rare diseases, though individually uncommon, collectively affect nearly 5% of India’s population—equivalent to one in every twenty individuals—highlighting the urgent need for inclusive healthcare policies. He urged society to interpret the rare disease challenge not just as a medical issue but as one of social inclusion, invoking the Prime Minister’s vision for empowering Divyangjan (persons with disabilities).
PM’s Call for Affordable Medicines and India’s Role as Global Pharmacy
Quoting Prime Minister Narendra Modi’s call for India to lead in research and development, Shri Agrawal reiterated the need for India to provide “the best and most affordable medicines for the welfare of humanity.” He highlighted India’s global stature as the “pharmacy of the world,” emphasizing that this leadership must extend to affordable treatment of rare diseases.
Transformative Impact of the Production Linked Incentive (PLI) Scheme
A significant policy measure under the PLI Scheme has made rare disease treatments considerably more affordable:
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Eight drugs for rare diseases have received PLI support, notably including Eliglustat for Gaucher’s Disease, which has reduced annual treatment costs from ₹1.8–3.6 crore to ₹3–6 lakh.
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Other supported drugs include Trientine for Wilson’s Disease, Nitisinone for Tyrosinemia Type 1, and Cannabidiol for Lennox-Gastaut Syndrome.
These cost reductions reflect the transformative power of targeted government incentives in improving patient access to essential medicines.
Call for Inclusivity and Corporate Social Responsibility
Shri Agrawal appealed to corporate entities to integrate rare disease patients within their Corporate Social Responsibility (CSR) initiatives and patient assistance programs to alleviate the high financial and emotional toll on affected families. He encouraged a re-examination of policies, funding, and regulatory frameworks through an inclusion-focused lens, suggesting consideration of special regulatory pathways or exemptions tailored to the unique challenges of rare diseases.
Looking Ahead: Global Best Practices and Policy Strengthening
Concluding his address, Shri Agrawal expressed eagerness to incorporate recommendations from the conference and learn from international best practices. His goal is to fortify India’s policy environment, ensuring enhanced research, innovation, and accessibility of medicines for rare diseases and orphan drugs.
Conclusion- by Shri Amit Agrawal
India’s commitment to pioneering affordable therapies for rare diseases is gaining momentum, supported by visionary leadership and transformative policies like the PLI Scheme. The amplified focus on inclusive healthcare underlines India’s role on the global stage as a provider of accessible and innovative medicines, aligning seamlessly with the Prime Minister’s vision of welfare-driven pharmaceutical leadership.
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Source: PIB
