Acute Drug Shortage Impacts Haemophilia Patients in UP

In Uttar Pradesh, patients with haemophilia are struggling due to a severe shortage of antihaemophilic factor (AHF), an essential medication for managing their condition. Haemophilia is a rare genetic disorder that disrupts the blood clotting process, causing considerable distress for those dependent on these essential drugs. Currently, over 7,000 patients in the state are struggling to access the necessary treatment.

For example, Baldev, a resident of Sitapur, experienced a knee bleed last Wednesday. When he sought AHF 8 at King George's Medical University (KGMU), he was turned away due to low stock, as it is being prioritized for life-threatening brain bleeds. Baldev was advised to use ice and given medication to prevent infection, but his condition remains critical. Similarly, Manish Verma from Basti needed factor eight for a nosebleed ten days ago but was refused at KGMU. After much effort, he managed to obtain a dose at Sanjay Gandhi Postgraduate Institute of Medical Sciences (SGPGIMS). Azad Rawat has been struggling for a month to obtain factor nine injections. Following a recent bleed, he could not secure the factor at either KGMU or SGPGIMS and received only one vial instead of the two needed, leaving him in ongoing pain despite the bleeding stopping.

The state government operates a haemophilia care program that provides free AHF to patients. Launched in 2009 with state government support, the program initially had eight haemophilia treatment centers (HTCs) and now operates 26 centers, serving 7,275 patients. Since 2015, the program has been funded by the National Health Mission (NHM). SGPGIMS Lucknow, the nodal center for the program, procures and supplies AHF to the HTCs for treating bleeding episodes.

A doctor mentioned that until last year, SGPGIMS purchased AHF and distributed it to the Hemophilia Treatment Centers (HTCs). The state government allocated around Rs 18 crore, with NHM providing Rs 39 crore. However, this year, while the state government’s Rs 18 crore was received, the NHM has not released the Rs 39 crore even after four months. This delay has severely depleted the state’s funds, making it difficult to maintain a steady AHF supply.

NHM officials explained that the central government decided to shift the budget from medical educational institutions to district health authorities. NHM director Pinky Jowel confirmed that 50% of the budget was recently released to the chief medical officer of Lucknow to be given to SGPGIMS. She emphasized that the nodal agency should not ration AHF as the state budget is available.

New directives have shifted the AHF procurement budget to district hospitals, moving away from medical institutions like PGI, which are part of the medical education sector. The district health committee is currently overseeing the purchase and distribution of factors. Until a new system is fully operational, the previous system will remain in effect. NHM funding is intended as a temporary solution, with medical institutions expected to receive their budget from the state government.

This critical shortage of AHF has caused immense hardship for haemophilia patients, highlighting the urgent need for a consistent supply of these life-saving medications. Effective coordination between state and central governments is essential to ensure that patients receive the necessary treatment without delay.