KABUL: In a heart-wrenching display of resilience and determination, patients grappling with the debilitating effects of hemophilia and their concerned family members recently gathered in the capital city of Kabul, Afghanistan. Their rallying cry was a desperate plea for help in the face of a critical shortage of essential blood factors, the proteins responsible for clotting in the bloodstream.
Hemophilia is a rare genetic disorder characterized by the absence or deficiency of clotting factors in the blood, leading to prolonged bleeding episodes and a heightened risk of internal and external bleeding. These clotting factors, notably Factor VIII, Factor XIII, and Factor VII, are vital for the body’s ability to staunch bleeding effectively. Without them, even minor injuries can result in excessive bleeding and severe pain, making everyday life a challenging ordeal for those affected by the condition.
Amidst their struggles, some patients voiced concerns about the suspension of assistance from aid organizations, stressing that humanitarian aid should never become a pawn in political agendas. Musa, one of the patients, implored, “The assistance to us should not be politicized. We should persevere and be neutral. We call on the WHO to help us. We are going towards penalization.”
Mohammad Sami, another patient, shared the profound impact of the supply shortages on his life, saying, If you don’t recognize our government, we are human after all and a nation. There is no injection, the factor. There is no Factor VIII and Factor XIII and Factor VII. There is no factor. It has been six months, my foot is in pain.
The dire situation has left many patients suffering not only physically but also financially. Bahman, a 20-year-old patient, revealed, “Since the factors have been suspended, I am going through severe pain. Both of my feet are harmed. I also have economic challenges and I am unable to purchase the medicine.”
The Afghanistan National Blood Bank (ANBB) has issued an alarming warning, stating that 98 percent of hemophilia patients in the country are at risk of paralysis and death due to the shortage of clotting factors. Patients like Farhad, who endure relentless pain, bear witness to the gravity of the situation: We have passed severe pain. We are awake from night till morning. My mom also stayed awake with me.
Mohammad Nasir Sadiq, head of the ANBB, estimated that there could be between 3,000 to 4,000 hemophilia patients in Afghanistan. Tragically, nearly all of them are now in severe distress. Sadiq stated, When we assess how many of the patients have been harmed or paralyzed, 98 percent of the patients have become severe.
Hemophilia is a rare disorder that profoundly affects those who live with it. In the absence of clotting factors, patients face a life filled with uncertainty, knowing that even a minor injury can lead to life-threatening bleeding. The shortage of clotting factors has magnified these challenges, leaving patients and their families in Kabul and across Afghanistan in a state of desperate need.
