Sharp 60% Drop in Rare Disease Funding Sparks Concern Over Patient Care
In a concerning development for India's healthcare landscape, funding allocations for rare disease treatment at designated Centres of Excellence have plummeted dramatically. Government data reveals that allocations have dropped from Rs 82.87 crore in the 2024–25 financial year to just Rs 32.73 crore in 2025–26—a staggering reduction of over 60%.
Unspent Funds Accumulate While Fresh Allocations Shrink
This funding decline comes despite multiple institutions continuing to carry forward substantial unspent balances from previous allocations. The funds are released under the National Policy for Rare Diseases, which supports treatment for conditions including Duchenne muscular dystrophy, Gaucher disease, Pompe disease, cystic fibrosis and numerous other genetic and metabolic disorders that typically require long-term, high-cost therapy.
Government records indicate that many leading medical centres—including AIIMS Delhi, MAMC, PGIMER Chandigarh and SGPGI Lucknow—reported "carried forward unspent funds" rather than receiving fresh allocations. This pattern suggests that previously released funds are not being fully utilized within the designated financial year, creating a paradoxical situation of reduced funding alongside unspent resources.
Limited Fresh Releases to Select Institutions
Only a handful of institutions received fresh funding releases in 2025–26. These include IPGMER Kolkata with Rs 11 crore, AIIMS Jodhpur with Rs 11.3 crore, and CDED-NIMS Hyderabad with Rs 8.43 crore. The selective nature of these releases highlights the uneven distribution of resources across the network of Centres of Excellence.
At the institutional level, a similar pattern emerges. Data accessed through Right to Information (RTI) requests shows that AIIMS Delhi received nearly Rs 47 crore for rare disease treatment over the past five years, of which approximately Rs 34 crore has been utilized. During this period, 553 patients applied for support, but only 350 received assistance, while 170 applications remain under process.
Funding Structure Explains Some Unspent Balances
Responding to concerns about unspent funds and pending cases, Dr. Nirupam Madan, medical superintendent of AIIMS, explained that the funding structure itself contributes to this 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 utilized over time for that specific patient. There is no treatment delay once a patient is approved under the scheme," she clarified.
Systemic Challenges in Rare Disease Funding
RTI activist Amit Gupta revealed that Rs 189 crore has been released to 13 Centres of Excellence over the past three financial years, yet several centres continue to report significant unspent balances. He identified multiple systemic challenges:
- Delays in processing patient applications
- Under-utilization of allocated funds
- Lack of clarity regarding support beyond the Rs 50 lakh per patient cap
- Absence of a sustainable, long-term funding mechanism for patients requiring lifelong treatment
Structural Gaps in Policy Implementation
The data points to a structural gap in the implementation of India's rare disease policy—where funds are allocated but not always deployed efficiently or in time to meet patient needs. Healthcare experts emphasize that rare disease treatment requires sustained and timely funding, as many conditions involve expensive, lifelong therapies that cannot be interrupted.
Delays in fund utilization or patient approval processes can directly impact clinical outcomes, making efficient deployment of allocated resources critical to ensuring timely access to care. The current situation raises questions about whether the reduced funding allocations reflect a strategic reassessment or simply budget constraints, and how this will affect the thousands of patients depending on these centres for life-sustaining treatments.
As India continues to develop its healthcare infrastructure for rare diseases, the balance between allocation, utilization, and patient access remains a crucial challenge requiring urgent attention from policymakers and healthcare administrators alike.
