Kamal Ghorui
NEW DELHI: Funding for rare disease treatment at Centres of Excellence has dropped sharply, with allocations falling from Rs 82.87 crore in 2024–25 to Rs 32.73 crore in 2025–26, even as several institutions continue to carry forward unspent funds.The funds are released under the National Policy for Rare Diseases, which supports treatment for conditions such as Duchenne muscular dystrophy, Gaucher disease, Pompe disease, cystic fibrosis and other genetic and metabolic disorders that often require long-term, high-cost therapy.Government data shows that many leading centres — including AIIMS Delhi, MAMC, PGIMER Chandigarh and SGPGI Lucknow — reported “carried forward unspent funds” instead of receiving fresh allocations, indicating that previously released funds are not being fully utilised within the financial year.Only a few institutions saw fresh releases in 2025–26. These include IPGMER Kolkata (Rs 11 crore), AIIMS Jodhpur (Rs 11.3 crore) and CDED-NIMS Hyderabad (Rs 8.43 crore).A similar pattern is visible at the institutional level. Data accessed through RTI shows that AIIMS Delhi received nearly Rs 47 crore for rare disease treatment over the past five years, of which about Rs 34 crore has been utilised. During this period, 553 patients applied for support, but only 350 received assistance, while 170 applications remain under process.Responding to concerns over unspent funds and pending cases, Dr Nirupam Madan, medical superintendent of AIIMS, said the funding structure itself explains the pattern. “Funds up to Rs 50 lakh are earmarked per patient and can be spent only on that individual as per the mandate. While funds may appear unspent, they are utilised over time for that specific patient. There is no treatment delay once a patient is approved under the scheme,” she said.RTI activist Amit Gupta, said that Rs 189 crore has been released to 13 Centres of Excellence over the past three financial years, yet several centres continue to report unspent balances.He pointed to key concerns, including delays in processing applications, under-utilisation of allocated funds, lack of clarity on support beyond the Rs 50 lakh cap, and the absence of a long-term funding mechanism for patients requiring lifelong treatment.The data points to a structural gap in the implementation of the rare disease policy — where funds are allocated, but not always deployed efficiently or in time to meet patient needs.Experts say rare disease treatment requires sustained and timely funding, as many conditions involve expensive, lifelong therapies. Delays in utilisation or approvals can directly impact patient outcomes, making efficient use of allocated funds critical to ensuring timely access to care.
