July 30,2024
Five out of 12 Centres of Excellence (COEs) formed to treat patients suffering from rare diseases have utilised less than 35 per cent of the funds allotted to them by the Centre over the last three years, according to patient advocacy groups and data from a reply given in Parliament.
According to data accessed by Business Standard, the maximum fund utilisation was seen at Institute of Postgraduate Medical Education and Research (IPGMER), Kolkata at 93.65 per cent. The next in the chart was King Edward Medical Hospital, Mumbai at 93.55 per cent.
Hyderabad-based Centre for DNA Fingerprinting & Diagnostics with Nizam’s Institute of Medical Sciences stands last in the list with only 4.53 per cent funds utilisation. Followed by Delhi’s Maulana Azad Medical College at 17.62 per cent.
According to a reply given by the health ministry in Parliament, as of February this year these centres have utilised only 48% of around Rs 109 crore disbursed in the last three years.
COEs are institutions identified by the central government to actively treat patients suffering from rare diseases. Currently, 12 such centres have a quota of 2,420 rare disease patients from six categories across three groups.
“While the government has set up CoEs to treat patients with rare diseases, patients with Group 3a conditions are still experiencing inordinate delay in procedural formalities across these centres,” a member associated with an advocacy group for patients with Group 3a conditions said.
According to the rare disease policy enacted in 2021, Group 3a includes conditions such as Lysosomal Storage Disorders (LSD’s) for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost, and lifelong therapy.
“There are currently around 454 eligible rare disease patients with LSD’s such as Pompe disease, Fabry disease, Mucopolysaccharidosis (MPS) type I and type II in India, to be put on immediate life-saving therapy as per the National Policy for Rare Diseases 2021,” the member added.
Source: Business Standard