India’s Rare Disease Funding Crisis: Millions Lie Idle as Patient Access Plummets

NEW DELHI — A burgeoning crisis in India’s healthcare sector has come to light as funding for rare disease treatments plummeted by over 60% in the current fiscal year. Despite an estimated 72 to 96 million Indians living with rare genetic disorders, government data reveals that financial allocations to Centres of Excellence (CoEs) dropped from ₹82.87 crore in 2024-25 to just ₹32.73 crore for 2025-26. This sharp decline occurs even as premier institutions like AIIMS Delhi and PGIMER Chandigarh report significant “unspent” balances from previous years, leaving hundreds of patients in a state of clinical limbo while awaiting life-saving therapies.

The Paradox of Plenty: Unspent Funds and Pending Lives

The National Policy for Rare Diseases (NPRD) 2021 was hailed as a landmark framework, establishing 15 Centres of Excellence across India to streamline diagnosis and treatment. Under this policy, patients can receive financial assistance of up to ₹50 lakh for one-time or long-term treatments.

However, Right to Information (RTI) disclosures have pulled back the curtain on a systemic bottleneck. While the government allocated nearly ₹974 crore for the 2024-26 period following Delhi High Court interventions, the actual deployment of these funds remains sluggish.

Utilization Stagnation at Major Centers

• AIIMS Delhi: Received ₹47 crore over five years but utilized only ₹34 crore. Of 553 patient applications, 170 remain pending.

• National Pattern: Historically, less than 50% of allocated funds (roughly ₹109 crore in previous cycles) were utilized, with the remainder carried over as “unspent” despite growing registries of enrolled patients.

“The optics of ‘unspent funds’ can be misleading, but the reality for the patient is binary: you either have the medicine or you don’t,” says Amit Gupta, an RTI activist who has been tracking the fund flow. “When millions are sitting in bank accounts while families are forced to crowdfund for basic survival, the system is failing its most vulnerable citizens.”

Understanding the Rare Disease Landscape in India

A “rare disease” in India is defined as a condition affecting fewer than 1 in 2,500 people. Due to India’s massive population, the collective burden is staggering. Approximately 6% to 8% of the population may be affected by one of the 7,000 to 8,000 known rare diseases.

The NPRD categorizes these conditions into three groups:

1. Group 1: Disorders amenable to one-time curative treatment (e.g., certain immune deficiencies).

2. Group 2: Diseases requiring long-term/lifelong therapy with relatively lower costs.

3. Group 3: High-cost diseases requiring lifelong therapy (e.g., Gaucher disease, Pompe disease, and Duchenne Muscular Dystrophy).

For patients in Group 3, the cost of Enzyme Replacement Therapy (ERT) can range from ₹10 lakh to over ₹1 crore annually, making the government’s ₹50 lakh cap a temporary fix for a permanent problem.

Expert Perspectives: Administrative Rigidity vs. Patient Need

Medical professionals at the forefront of these centers argue that the funding “surplus” is a byproduct of strict accounting rather than a lack of need.

Dr. Nirupam Madan, Medical Superintendent at AIIMS Delhi, explains the administrative side: “Funds up to ₹50 lakh are earmarked specifically per patient. These funds are spent incrementally as the individual undergoes treatment. They may appear ‘unspent’ on a balance sheet, but they are legally committed to that specific person. Once approved, we ensure there are no treatment delays.”

However, outside the government apparatus, experts point to a “diagnostic odyssey” that prevents funds from reaching those who need them. Dr. V. Mohan, a prominent diabetologist and rare disease advocate, notes that the current cap is fundamentally mismatched with biological reality.

“Rare therapies like enzyme replacements are not one-off events. They are monthly necessities that cost lakhs. Once a family hits the ₹50 lakh limit, they are effectively back at square one. This cap forces families into impossible decisions and causes lost opportunities for early intervention,” says Dr. Mohan.

Public Health Implications: A Growing Divide

The funding shortfall and administrative delays exacerbate existing healthcare inequities in India. Most CoEs are located in major metropolitan areas, forcing rural families to travel hundreds of miles for specialized testing and treatment.

Regional Prevalence Trends:

• Gujarat & Punjab: Higher incidence of β-thalassemia.

• Tamil Nadu: Notable clusters of Duchenne Muscular Dystrophy (DMD).

• Nationwide: Approximately 95% of rare diseases have no approved treatment, making the few available therapies even more critical.

The failure to utilize available funds (potentially ₹271 crore sitting idle across various accounts) means that thousands of children continue to suffer from progressive muscle wasting or organ failure that could otherwise be managed.

The Road Ahead: Policy Reform and Accountability

The Delhi High Court has recently taken a proactive stance, mandating 100% utilization of the National Fund for Rare Diseases (NFRD) and requesting regular oversight. However, advocates argue that more structural changes are needed:

1. Digital Portals: A transparent, real-time tracking system for patient applications to reduce approval times, which currently exceed 30 days in many cases.

2. Tiered Funding: Moving beyond a flat ₹50 lakh cap to a lifelong support model for Group 3 diseases.

3. CSR Integration: Encouraging corporations to direct mandatory Corporate Social Responsibility (CSR) funds toward rare disease research and treatment under Schedule VII of the Companies Act.

4. Local Manufacturing: Reducing dependence on expensive imports by incentivizing domestic production of orphan drugs.

As India moves further into 2026, the gap between policy intent and patient outcomes remains wide. For the millions of Indians living with rare conditions, the “unspent millions” represent more than just a budgetary anomaly—they represent a missed chance at a functional life.

Medical Disclaimer: This article is for informational purposes only and should not be considered medical advice. Always consult with qualified healthcare professionals before making any health-related decisions or changes to your treatment plan. The information presented here is based on current research and expert opinions, which may evolve as new evidence emerges.

References

• Economic Times Health (2026). Rare disease funds drop, unspent money piles up at key centres. Link