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Five out of the twelve Centres of Excellence (COEs) established to treat patients with rare diseases have utilized less than 35% of their allocated funds over the past three years. This information comes from patient advocacy groups and a reply provided in Parliament. These centres were established under the National Policy for Rare Disease (NPRD) in 2021.
Fund Utilization Statistics
According to data from Business Standard:
- Highest Utilization:
- Institute of Postgraduate Medical Education and Research (IPGMER), Kolkata: 93.65%
- King Edward Medical Hospital, Mumbai: 93.55%
- Lowest Utilization:
- Centre for DNA Fingerprinting & Diagnostics, Hyderabad (Nizam’s Institute of Medical Sciences): 4.53%
- Maulana Azad Medical College, Delhi: 17.62%
As of February this year, these centres have utilized only 48% of the approximately ₹109 crore disbursed over the past three years.
Role of COEs
COEs are designated by the central government to actively treat patients with rare diseases. Currently, there are 12 COEs with a quota of 2,420 patients from six categories across three groups.
Issues Faced by Group 3a Patients
- Group 3a Conditions: Includes Lysosomal Storage Disorders (LSDs), such as Pompe disease, Fabry disease, and Mucopolysaccharidosis (MPS) type I and II. These conditions have definitive treatments but face challenges including high costs and lifelong therapy.
- Current Situation: Approximately 454 patients with LSDs are eligible for treatment under NPRD. However, only 98 are currently receiving government-approved treatment, with over 300 still awaiting treatment.
Concerns Raised
- Patient Delays and Fatalities: Delays in starting treatment and uncertainties in sustainable funding are critical issues. About 28 patients have reportedly died while waiting for treatment.
- Advocacy Groups’ Actions: Caregivers and advocacy groups have urged the government to ensure efficient use of funds by COEs. A recent letter to Union Health Minister JP Nadda highlighted these delays and the exhaustion of the one-time support of ₹50 lakh for some patients.
Personal Accounts
- Delhi-Based Parent: A parent of a six-year-old child with MPS-2 has faced delays in accessing life-saving therapy despite eligibility.
- Hyderabad-Based Parent: A parent of an eight-year-old Pompe disease patient is struggling with the lack of urgency from the hospital despite available funding for Enzyme Replacement Therapy (ERT).
Medical Expert’s View
A medical expert emphasized the urgency of timely treatment for young children with LSDs to avoid life-threatening complications. Despite the availability of approved therapies and government funding, delays are a significant concern.
Multiple-Choice Questions (MCQs):
- What percentage of funds have five COEs utilized over the past three years?
- A) More than 50%
- B) Less than 35%
- C) 70%
- D) 90%
- Which COE had the highest fund utilization percentage?
- A) Maulana Azad Medical College
- B) King Edward Medical Hospital
- C) Centre for DNA Fingerprinting & Diagnostics
- D) Institute of Postgraduate Medical Education and Research (IPGMER)
- As of February this year, what percentage of the allocated funds have the COEs utilized?
- A) 35%
- B) 48%
- C) 60%
- D) 75%
- How many patients with Lysosomal Storage Disorders (LSDs) are currently receiving government-approved treatment?
- A) 98
- B) 300
- C) 454
- D) 500
- What is the primary concern expressed by advocacy groups regarding Group 3a conditions?
- A) Lack of awareness
- B) Inefficient use of funds
- C) Inadequate number of COEs
- D) Insufficient number of patients