From Survival to Advocacy: I Want the Next Child with Hemophilia to Need Less Luck

When I was one year old, I fell. Within hours, a hematoma swelled on my skull until it looked as though I were growing a second head. In Bihar, a state of over 100 million people in eastern India, no doctor could tell my parents why. It took four more years, a deep cut inside my mouth that refused to stop bleeding, and a thousand-kilometer journey to the All India Institute of Medical Sciences (AIIMS) in New Delhi before my family finally had a name for my condition: Severe Hemophilia A.

Having a diagnosis, however, did not mean having medicine. In the Bihar of my childhood, clotting factor was a distant rumor—something that existed in other cities, for other people. At home, our only tools were whole blood transfusions and ice.

My knees and shoulders became target joints before I even knew the medical term for them. Most nights, my childhood was measured in shifts: my mother holding an ice pack to my swollen knee until her fingers went numb, and my father taking over until dawn. School was a place I visited briefly between bleeds. Looking back, there were several episodes I should not have survived. That I made it to adulthood felt less like a medical outcome and more like a coin toss that kept landing in my favor.

As I grew older, I began reaching out to fellow patients and their parents across Bihar, educating them about hemophilia and helping them make sense of their condition. I knew the quiet isolation of growing up in a bed while the world moved on outside, and I knew how much difference the right guidance could make. Years after completing my undergraduate studies, I also decided to pursue a postgraduate degree in psychology—a subject that had always drawn me in. Studying the human mind gave me better tools to support patients through the emotional weight of living with a chronic bleeding disorder.

Yet the more families I sat with, the more a hard truth settled in. While basic clotting factor had finally become available in Bihar over the years, the supply remained painfully intermittent, and modern preventative care was still out of reach. Whenever hospital stocks ran dry, parents were pushed right back into the same cycle of ice packs and anxious waiting that my own family had endured decades earlier. I realized that you cannot educate or counsel a child out of an active bleed. Awareness and empathy, when reliable treatment remains out of reach, are just shared helplessness.

That realization pushed me out of counseling conversations and into the corridors of the state secretariat. Alongside fellow patients, I began pressing the state government to bring modern, consistent, preventative care to Bihar. We did not have an institution backing us—just damaged joints, folders full of clinical data, and a refusal to be ignored. Over several months, we drafted more than a hundred policy notes and made over fifty visits to health ministry offices, waiting for hours outside doors to explain the realities of hemophilia to policymakers.

Recently, that persistence paid off. The Bihar state cabinet officially approved a dedicated ₹26.33 crore ($3.1 million USD) flagship programme exclusively for non-factor replacement therapy (Emicizumab), alongside separate approval to provide Extended Half-Life (EHL) clotting factors for the wider patient community in our state.

Policy approval on paper is an important milestone, though the real test is making sure these vials reach the hospital shelves and benifits the patients waiting for them without interruption. Still, when the cabinet note was passed, I thought about myself at seven years old, staring at the ceiling on another missed school day. If someone had told that boy that one day he would walk into government ministries and help secure life-changing treatment for his state, I think he would have believed it. Not because he knew how policy worked, but because lying in bed for months gives you a very stubborn belief in what you can do once you finally stand up: I can.

I have not “overcome” hemophilia. I live with the physical toll of those untreated years every day, and every step I took up the stairs of the health ministry reminded me of what a lack of access costs a human body.

I was fortunate to survive my childhood. Through my advocacy, I want to make sure that the next child growing up with hemophilia in Bihar has more than intermittent relief and the hope that things will somehow work out. I want that child to have uninterrupted access to modern care, a schoolbag on his shoulders, and the freedom to plan a future—while needing far less luck than I did.