DEADLY APATHY | Haemophilia patients in Kashmir struggle for life-saving medication

Srinagar, Mar 11: For Syed Majid, a haemophilia patient, the holy month of Ramadan has brought an agonising dilemma - the lack of life-saving medication has left him uncertain about his ability to survive.

Over the past two months, Majid has been without the crucial factor protein injections that are typically administered twice a week, leaving him in a perilous state.

Haemophilia, a rare genetic disorder that impairs blood clotting, can lead to excessive internal or external bleeding.

For Majid, a Haemophilia A patient who requires Factor 8 medications, the absence of this treatment has become a matter of life and death.

“Without the administration of Factor 8 medication, I can die anytime due to interior bleeding or damage to my organs,” Majid said, his voice laced with desperation. “At the same time, my dosage cost if bought privately will cost me more than Rs 1 lakh, which I and my family cannot afford.”

The haemophilia treatment is notoriously expensive, with a single dose of the clotting factor ranging from Rs 6000 to a staggering Rs 24,000.

Majid, who also serves as the president of the Haemophilia Society of Kashmir, revealed that his organisation has 413 registered patients, with over 250 requiring Factor 8 medicines – all of whom have been without medication for the past two months.

The shortage of Factor 8 medications at SMHS has compounded the crisis, leaving Majid and countless others in a state of uncertainty and fear.

“We are living on borrowed time,” Majid said. “Without access to these life-saving injections, any minor injury or internal bleeding could prove fatal. I am by birth a haemophilia patient and need this medication, which is infused through IVs.”

have alleged that the Haemophilia Day Care Centre at SMHS Hospital of GMC Srinagar is facing a shortage of anti-haemophilia drugs due to the lackadaisical approach of the Jammu and Kashmir Medical Supplies Corporation Limited (JKMSCL), putting patients at risk.

Head of the Department of Pathology at GMC Srinagar, Dr Sheikh Bilal confirmed the crisis.

“We have given procurement orders to JKMSCL. A few days back, the medicine was bought by the medical supplies corporation, but they are not giving it to us, saying that they have to wait for testing of medicines before supplying. However, the problem is severe as these patients require the medication; otherwise, their condition can go from bad to worse,” he said.

Dr Bilal further emphasised the gravity of the situation, saying, “Serious injury and even death are possible if these patients don’t receive regular and proper medication, as they bleed for a longer time after an injury. In such patients, there are also chances of internal bleeding in knees, ankles, elbows, and other joints, and this can be life-threatening.”

However, General Manager (K) of JKMSCL, Dr Abdul Majid Mirab explained the delay saying, “We have received supplies of Factor 8 medicines, but we are awaiting reports of testing labs for these medicines before being supplied. It is an imported medicine, and there is a procedure to get it tested before being given to patients.”