Delhi: Patients’ advocacy groups have called for the health ministry to implement a mechanism to streamline the utilisation of rare disease funds and ensure as many lives as possible are saved after it emerged gross underutilisation of the funds allocated to centres of excellence (CoEs) for rare disease treatment by in the past three years.
The Union Ministry of Health and Family Welfare had disbursed around Rs 109 crore in funds to these institutes in FY 2021-22, 2022-23, and 2023-24. However, these CoEs spent only Rs 53 crore, or 48.7%, being used during those three years, reports Times of India in a news report.
So far, 2,420 patients have been enrolled with CoEs across the country. The data was shared by the ministry in response to a question raised by Lok Sabha MP Shashi Tharoor in Lok Sabha during the Budget Session on Feb 9.
Though these unspent funds are allowed to be carried forward by these centres, what is shocking is that the underutilization of rare disease funds by centres of excellence happened despite a National Rare Diseases’ Committee (NRDC) appointed by the Delhi High Court. Read about it here.
This committee was set up in compliance with the order dated 15.05.2023 of the Hon’ble High Court of Delhi in the matter of WP No. 5315/2020 and other connected petitions under the chairmanship of Secretary, Department of Health Research & DG, ICMR. The committee has conducted 12 meetings so far.
Worst Underutilization:
Several institutions have significantly underutilized the funds allocated for rare disease treatment, indicating inefficiency or lack of capacity to utilize the resources effectively.
Underutilization of rare disease funds can have adverse effects on rare disease patients, as it may lead to delays or gaps in treatment, affecting patient outcomes and quality of life.
Financial year 2023-24: Worst Spenders
According to the financial assistance released by the Ministry of Health during the financial year 2023-24 to various Centres of Excellence (CoEs) and available balance, the worst three performers with underutilization percentage among the CoEs during 2023-24 was led by the Centre for DNA Fingerprinting & Diagnostics with Nizam’s Institute of Medical Sciences, Hyderabad with unspent and accumulated funds lying with it standing approximately at 235.02%.
It was followed by Maulana Azad Medical College, New Delhi with unspent and accumulated funds standing at 120.84% including funds it was carrying from the previous year.
The underutilization percentage for Sree Avittam Thirunal Hospital (SAT), Government Medical College, Thiruvananthapuram is approximately 82.33%..
It was closely followed by the All India Institute of Medical Sciences, New Delhi and Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow, with underutilized funds at approximately 80.36% and 71.08% respectively.
Similarly, the underutilized funds lying with the All India Institute of Medical Sciences (AIIMS), Jodhpur is approximately 69.61%.
Financial year 2023-24: Best Spender
The Institute of Child Health and Hospital for Children (ICH & CH), Chennai has no unspent rare disease funds lying with it. Its utilization rate is 100%. It spent the entire Rs 3,00,00,000 allotted to it by the Union Health Ministry.
It is followed by King Edward Medical Hospital, Mumbai and the Institute of Post-Graduate Medical Education and Research, Kolkata, which were among the CoEs with the best utilization record of the rare disease funds for the final year 2023-24 with 90.57% and 90.13% funds being spent respectively.
Financial year 2022-23: Worst Spender
·The underutilization percentage for the Centre for DNA Fingerprinting & Diagnostics with Maulana Azad Medical College, New Delhi at 100% and Nizam’s Institute of Medical Sciences, Hyderabad for the financial year 2022-23 is approximately 98.58%.
Financial year 2022-23: Best Spender
The following Centres of Excellence (CoEs) wereamong those with the best utilization record of the rare disease funds. They include Center for Human Genetics(CHG) with Indira Gandhi Hospital, Bengaluru (100%), Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow (100%), All India Institute of Medical Sciences, New Delhi (94.89%), Institute of Post-Graduate Medical Education and Research, Kolkata (98.13%), King Edward Medical Hospital, Mumbai (83.81%), Institute of Child Health and Hospital for Children (ICH & CH), Chennai ( 80.62%).
