RTI Flags Funding Gaps As Rare Disease Patients Hit Financial Limits
The RTI data highlights systemic shortcomings in how financial support is being delivered.
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- At least 34 rare disease patients have exhausted the Rs 50 lakh treatment cap in India
- AIIMS received Rs 46.98 crore but disbursed only Rs 34 crore to rare disease patients
- Out of 553 applicants, 170 financial aid requests remain pending and 24 were rejected
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An RTI response has revealed that at least 34 rare disease patients in India have already exhausted the Rs 50 lakh treatment cap under the National Policy for Rare Diseases-despite requiring lifelong care-exposing serious gaps in the country's funding model for chronic and high-cost illnesses.
Rare diseases are a group of conditions that affect a small percentage of the population but are often severe, chronic, and life-threatening. They are typically genetic in origin, may appear early in life, and frequently require long-term, specialized, and expensive treatment. Examples include disorders such as Spinal Muscular Atrophy and Lysosomal Storage Disorders, where therapies can run into crores over a patient's lifetime.
The RTI data highlights systemic shortcomings in how financial support is being delivered. According to the response, the All India Institute of Medical Sciences (AIIMS) received approximately Rs 46.98 crore over the past five years for rare disease treatment, but only about Rs 34 crore has been disbursed to patients, leaving a notable portion of funds unutilized.
Out of 553 patients who applied for financial assistance, only 350 have received support so far. Meanwhile, 170 applications remain pending and 24 have been rejected, indicating significant delays in processing and approval.
Beyond individual cases, the RTI also reveals broader inefficiencies. A total of Rs 189 crore has been released to 13 Centres of Excellence over the past three years, yet several centres have reported unspent funds-raising concerns about implementation and administrative bottlenecks.
Key Concerns Identified
Delays in processing applications, with 170 cases still pending
Under-utilization of allocated funds at treatment centres
Lack of clarity on financial support beyond the Rs 50 lakh cap
Absence of a long-term funding framework for lifelong diseases
Need for Policy Overhaul
The findings have intensified calls for urgent reforms, particularly revisiting the Rs 50 lakh cap, which appears inadequate for diseases requiring lifelong therapy. Experts argue that without a sustainable funding mechanism and faster approvals, patients with rare diseases risk losing access to critical, life-saving treatments.
As the data underscores, the challenge is not only about allocating funds-but ensuring they reach patients in time and continue for as long as treatment is needed.
Disclaimer: This content, including advice, provides generic information only. It is in no way a substitute for a qualified medical opinion. Always consult a specialist or your own doctor for more information. NDTV does not claim responsibility for this information.
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