Gross under-utilisation of funds for rare diseases by Centres of Excellence is revealed in information furnished by Health Ministry in Lok Sabha

In reply to an unstarred question by Congress MP Shashi Tharoor, data furnished on February 9 by Union Minister of State for Health and Family Welfare Bharati Pravin Pawar revealed that only 48.7% of around ₹109 crore disbursed by the Ministry in the last three years was utilised.

While nearly 2,420 patients have been enrolled with the 11 Centres of Excellence for Rare Diseases (CoERDs) in India, data furnished by the Union Ministry of Health and Family Welfare in the Lok Sabha during this budget session revealed gross under-utilisation of funds disbursed to these centres in the last three years.

In reply to an unstarred question by Congress MP Shashi Tharoor, data furnished on February 9 by Union Minister of State for Health and Family Welfare Bharati Pravin Pawar revealed that only 48.7% of around ₹109 crore disbursed by the Ministry in the last three years was utilised.

Providing year-wise details of the allocation and utilisation of funds by each of the CoERDs., the Minister informed that only around ₹53 crore of the ₹109 crore disbursed by the Health Ministry to all centres in the last three years had been utilised. 

The National Rare Disease Policy (NRDP) that was formulated in March 2021 was amended in May 2022. The one-time monetary aid of ₹20 lakh per patient announced under the original policy only for Group 1 patients (who need only one time treatment), was revised to one-time aid of ₹50 lakh per patient for all groups of rare diseases. While Group 2 diseases can be managed through dietary supplements, Group 3 diseases have approved therapy and clinical evidence of patients leading quality lives post therapy. Treatment is lifelong for this category.

According to the data, Maulana Azad Medical College, New Delhi has recorded nil utilisaton of ₹1.40 crore released in March 2023. This centre has carried forward the whole amount to the next financial year.

The CoERDs with the least utilisation in all three years include Centre for DNA Fingerprinting and Diagnostics at Nizam’s Institute of Medical Sciences, Hyderabad (4.53%), Maulana Azad Medical College, New Delhi (17.62%), Sree Avittam Thirunal Hospital (SAT), Government Medical College, Thiruvananthapuram (17.67%), and All India Institute of Medical Sciences, New Delhi (34.64%).

“Unspent balance of financial year 2022-23 has been carried forward by the CoERDs for continuing treatment of the patients. The Institute of Child Health and Hospital for Children, Chennai is the only centre that has surrendered the unspent balance of ₹96.03 lakh,” the reply stated.