Inclusive approach needed to tackle rare diseases: Pharma Secretary
He pointed out that while rare diseases may seem infrequent on an individual basis, collectively they impact nearly one in every twenty persons, approximately 5 per cent of the population, making it a critical public health challenge.
Agrawal made these remarks during the inaugural session of the Rare Diseases Conference 2025, organized by FICCI, which was themed 'Making Rare Care Possible: Availability, Accessibility, Awareness.'
The Secretary urged the issue be viewed not only as a medical or technical concern but through a human lens of inclusion and empathy. Citing Prime Minister Narendra Modi's inclusive vision for Divyangjan, he called upon the government, industry, academia, and civil society to unite in addressing the multifaceted burdens borne by patients and their caregivers.
Referring to the Prime Minister's recent Independence Day address, he recalled: 'We are known as the pharmacy of the world, but isn't it the need of the hour to invest in research and development? Shouldn't we be the ones providing the best and most affordable medicines for the welfare of humanity?'
The Secretary further informed that rare diseases have been incorporated as a focus area under the Production Linked Incentive (PLI) Scheme for Pharmaceuticals. This initiative has supported the development of eight drugs targeting rare conditions, including Eliglustat for Gaucher's Disease, where treatment costs have been drastically reduced from Rs 1.8–3.6 crore annually to Rs 3–6 lakh.
Other supported treatments include Trientine for Wilson's Disease, Nitisinone for Tyrosinemia Type 1, and Cannabidiol for Lennox–Gastaut Syndrome. He underscored that these significant cost reductions exemplify the transformative potential of targeted policy measures, Agrawal said.
In addition, the Secretary encouraged corporate entities to integrate rare disease patients into their CSR initiatives and patient assistance programmes, given the considerable financial and emotional hardships faced by affected families.
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