Extent of under-utilisation of funds for rare diseases is revealed in Lok Sabha

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Nizam’s Institute of Medical Sciences, Hyderabad (4.53%) is among the CoERDs with the least utilisation of funds.

Nizam’s Institute of Medical Sciences, Hyderabad (4.53%) is among the CoERDs with the least utilisation of funds.
| Photo Credit: G. KRISHNASWAMY

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.

Least utilisation of funds

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.

Expressing concern over the poor utilisation, L. Hanumanthaiah, Congress Rajya Sabha MP from Karnataka, who is also a member of the Parliamentary Standing Committee (PSC) on Health and Family Welfare, said the Ministry should monitor the utilisation on a day-to-day basis.

“The Ministry should also ask the CoERDs to explain the poor utilisation and submit a detailed report. I have been consistently raising this issue in the Rajya Sabha, and had also written to the Union Health Minister Mansukh Mandaviya in 2023 expressing serious concern over inordinate delay by several CoERDs to start treatment of rare disease patients,” he said.

Negligence by centres of excellence

Disturbed over the poor utilisation, patient advocacy groups alleged sheer negligence by the CoERDs. They contended that many of eligible patients, who could have been saved by this financial assistance, have unfortunately lost their lives due to lack of timely commencement of treatment by the CoERDs.

“It is unfortunate that less than half of the funds disbursed by the Ministry has been utilised by the centres. The unutilised amount can still be used to save the lives of several eligible rare disease patients across India,” said Manjit Singh, founder and honorary president, Lysosomal Storage Disorder Support Society (LSDSS).

“What is even more heartbreaking is that many children, who could have been put on treatment with this money, have passed away waiting for treatment to commence. I urge the Health Ministry to put in place a mechanism to streamline the utilisation of funds and ensure as many lives as possible can be saved,” he said.

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