Rare Disease Funding Crisis: Why Unspent Money Piles Up

The Declining State of Rare Disease Treatment Funding in India

Rare disease treatment funding in India has recently faced a significant and unexpected downturn. For the 2025-26 fiscal year, allocations for specialized medical centers plummeted from Rs 82.87 crore to just Rs 32.73 crore. This sharp 60% drop occurs despite a growing number of patients awaiting life-saving therapies. Consequently, many healthcare advocates are raising alarms about the sustainability of the National Policy for Rare Diseases. Premier institutions now report large sums of unspent money while patients struggle to access expensive medications.

Government data indicates that leading Centres of Excellence are carrying forward existing balances instead of receiving new grants. For example, AIIMS Delhi, PGIMER Chandigarh, and SGPGI Lucknow all reported significant unspent funds. Although the budget has decreased, some institutions like AIIMS Jodhpur and IPGMER Kolkata did receive fresh releases. Nevertheless, the overall trend suggests a major bottleneck in how the health ministry distributes and monitors these critical financial resources.

Structural Bottlenecks in Rare disease treatment funding

The current funding structure explains much of the delay in fund utilization. Under the present mandate, the government earmarks up to Rs 50 lakh for each specific patient. These funds remain tied to that individual and cannot be diverted elsewhere. Therefore, the money may appear unspent on paper while the hospital utilizes it slowly over the course of the patient’s treatment. Dr. Nirupam Madan from AIIMS Delhi noted that approved patients do not face treatment delays once their specific funds are secured.

However, many applicants remain in a state of limbo during the approval phase. Recent RTI data shows that AIIMS Delhi received nearly Rs 47 crore over the last five years but utilized only Rs 34 crore. Out of 553 applications, only 350 patients received financial assistance. This leaves 170 applications under process, which represents a significant gap in service delivery. Furthermore, activists argue that the lack of a long-term mechanism for lifelong treatment creates ongoing uncertainty for families. For professionals managing these complex cases, staying updated through specialized internal medicine training is essential for navigating evolving healthcare policies.

The Impact of Under-Utilization on Patient Outcomes

Delays in deploying funds can lead to devastating consequences for those with genetic disorders. Conditions like Duchenne muscular dystrophy and Pompe disease require high-cost, sustained therapy. If the allocation process is inefficient, patient outcomes inevitably suffer. Experts emphasize that the efficient use of every rupee is critical for ensuring timely access to care. Additionally, the absence of clarity regarding support beyond the Rs 50 lakh cap remains a major concern for clinicians and families alike.

To bridge this structural gap, the implementation of the rare disease policy must become more agile. While the government has designated 13 Centres of Excellence, many still struggle with application processing delays. Systematic changes are necessary to ensure that allocated money actually reaches the bedside. Only through improved coordination can India provide a reliable lifeline for those suffering from rare and metabolic disorders.

Frequently Asked Questions

Q1: Why is there so much unspent money if patients need treatment?

Funds are earmarked for specific individuals up to a cap of Rs 50 lakh. Because this money is tied to one patient, it remains in the hospital account and is utilized gradually as the treatment progresses over time.

Q2: Which diseases are covered under the National Policy for Rare Diseases?

The policy supports treatments for several genetic and metabolic disorders. These include Duchenne muscular dystrophy (DMD), Gaucher disease, Pompe disease, and cystic fibrosis, among others.

Q3: How many patients have successfully received aid at AIIMS Delhi?

According to recent RTI data, out of 553 total applicants over the past five years, 350 patients received financial assistance while 170 applications are still being processed.

References

1. Rare disease funds drop, unspent money piles up at key centres – ETHealthworld
2. National Policy for Rare Diseases (NPRD), 2021 – Ministry of Health and Family Welfare, Government of India
3. RTI Disclosure on Fund Utilization at Centres of Excellence – AIIMS Delhi Medical Superintendent Office

Disclaimer: This article was automatically generated from publicly available sources and is provided for informational and educational purposes only. OC Academy does not exercise editorial control or claim authorship over this content. It is not a substitute for professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider and refer to current local and national clinical guidelines.