Government funding for rare disease treatment at designated Centres of Excellence (CoEs) has declined significantly in the current financial year. Allocations fell 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 from previous years.
The funding is released under the National Policy for Rare Diseases (NPRD), which aims to support patients suffering from life-threatening and often expensive conditions.
National Policy Supports High-Cost Rare Disease Treatments
The National Policy for Rare Diseases provides financial support for the treatment of several complex genetic and metabolic disorders. These include Duchenne muscular dystrophy, Gaucher disease, Pompe disease, cystic fibrosis, and other rare conditions that often require long-term and high-cost therapies.
Because many of these diseases require lifelong treatment and specialised care, sustained financial support from the government plays a crucial role in ensuring patient access to therapy.
Several Leading Institutes Carry Forward Unspent Funds
Government data indicates that several major institutions have carried forward unspent funds instead of receiving new allocations for 2025–26.
These institutions include:
- AIIMS Delhi
- Maulana Azad Medical College (MAMC), Delhi
- PGIMER Chandigarh
- Sanjay Gandhi Postgraduate Institute of Medical Sciences (SGPGI), Lucknow
The presence of unspent funds suggests that previously allocated resources have not been fully utilised within the financial year, which has influenced fresh fund releases.
Only a Few Centres Receive Fresh Allocations
While several institutions carried forward earlier funds, only a limited number of Centres of Excellence received fresh allocations in 2025–26.
These include:
- IPGMER Kolkata – Rs 11 crore
- AIIMS Jodhpur – Rs 11.3 crore
- Centre for DNA Fingerprinting and Diagnostics – NIMS (CDED-NIMS), Hyderabad – Rs 8.43 crore
This selective allocation highlights the uneven distribution and utilisation of rare disease funding across institutions.
AIIMS Delhi Data Shows Gap Between Applications and Approvals
Data obtained through Right to Information (RTI) reveals a similar trend at the institutional level.
Over the past five years, AIIMS Delhi received nearly Rs 47 crore for rare disease treatment. However, the institute utilised only about Rs 34 crore during this period.
In addition, 553 patients applied for financial support, but only 350 patients received assistance. Meanwhile, 170 applications are still under process, indicating delays in approvals and fund disbursement.
AIIMS Clarifies Patient-Specific Funding Structure
Responding to concerns about unspent funds and pending applications, Dr. Nirupam Madan, Medical Superintendent of AIIMS Delhi, explained that the funding model itself affects how funds are utilised.
She noted that up to Rs 50 lakh is earmarked per patient under the policy. Importantly, these funds can only be used for the specific patient for whom they are approved.
“Although funds may appear unspent, they are reserved for that individual patient and are utilised gradually during the course of treatment. Once a patient is approved under the scheme, there is no delay in treatment,” she said.
RTI Activist Raises Concerns Over Fund Utilisation
However, RTI activist Amit Gupta highlighted broader concerns about the overall utilisation of rare disease funds.
According to Gupta, the government has released around Rs 189 crore to 13 Centres of Excellence over the past three financial years. Despite this, several centres continue to report unspent balances.
He also pointed out several systemic challenges, including:
- Delays in processing patient applications
- Under-utilisation of allocated funds
- Lack of clarity on financial support beyond the Rs 50 lakh cap
- Absence of a long-term funding mechanism for lifelong treatments
Structural Challenges in Rare Disease Policy Implementation
As reported by TOI, the data highlights a structural gap in the implementation of India’s rare disease policy. Although funds are allocated to treatment centres, they are not always deployed efficiently or quickly enough to meet patient needs.
Experts emphasise that rare diseases often require timely and sustained treatment, which makes efficient financial management essential.
Need for Timely and Sustained Funding for Rare Diseases
Medical experts stress that many rare diseases involve lifelong and extremely expensive therapies, making continuous funding critical for patient survival and quality of life.
Therefore, delays in approvals or fund utilisation can directly affect patient outcomes. Ensuring efficient allocation, timely approvals, and long-term funding mechanisms will be key to improving access to care for patients living with rare diseases in India.