This past week, the executive board of the Factor Foundation had the opportunity to meet with Devyansh, an eighteen-year-old from India living with hemophilia, a rare genetic bleeding disorder that affects the body’s ability to form blood clots. Through our conversation, we gained insight into the reality of living with hemophilia, specifically in a country where access to treatment is often dictated by socioeconomic status, and where awareness of Hemophilia remains extremely low.

Hemophilia is caused by a deficiency in clotting factors, proteins in the blood that help stop bleeding. Individuals with Hemophilia A lack Factor VIII, while those with Hemophilia B lack Factor IX. The severity of the conditions depends on how much factor is present within the bloodstream. Without proper levels, even minor injuries can lead to prolonged bleeding, joint damage, and in some cases, potentially internal hemorrhaging (blood escaping from damaged blood vessels).

The Factor Foundation was named in honor of these critical proteins, with a mission to spread awareness for those affected by hemophilia worldwide. Our goal is to amplify voices like Devyansh’s and highlight the barriers that prevent equity in care worldwide.

Devyansh’s life is shaped by constant caution. “I have to be very careful with physical activities," he told us. Running and lifting heavy objects often have limitations, and joint pain is a constant adversary. In 2021, he suffered a brain clot, leading to vomiting, headaches, and even jaundice. “You have to be mentally strong when you are diagnosed with hemophilia," he said. “Think of hemophilia as your friend.”

Despite the constant challenges, Devyansh finds comfort in print sketching, specifically sketching others' drawings or objects, Bollywood films, and his dream of acting. His story is one of strength, but it also reveals the cracks in India’s healthcare system, sparking powerful discussions about medicine on a global scale.

In India, access to Anti-Hemophilic Factor (AHF) is limited and expensive. While the Government of the National Capital Territory of Delhi (GNCTD) provides AHF free of charge to patients below the Poverty Line (BPL), many others struggling to float above it pay out-of-pocket. Devyansh explained that 250 units of factor can cost up to $1000, and prices only continue to rise with higher doses. This pricing structure forces treatment to be rationed, causing patients to receive less than they need, with potentially life-threatening consequences.

Moreover, misconceptions remain within families, often alarmed by possible side effects. “Some people think children can be paralyzed by factors,” Devyansh shared. This fear, combined with stigma, leads many children to hide their symptoms from parents, delaying care even during intensifying suffering.

India is not alone in this struggle. Worldwide, hemophilia care is marked by disparity. In high-income countries, patients often have easy access to recombinant factors, lab-made proteins that reduce the risk of infection and allergic reactions. Devyansh uses Nova 8, a recombinant factor, but noted financial stability, or lack thereof, causes patients to receive different factors. Devyansh also explained that not all patients tolerate the same factors, further complicating Hemophilia care. In lower-income regions, plasma-derived factors are more common, but supply shortages and quality gaps remain major concerns.

Gene therapy offers hope for the future, potentially allowing patients to produce their own clotting factors. However, as Devyansh pointed out, this treatment is extraordinarily expensive and largely unavailable in government hospitals, which an estimated 85% of India’s hemophilia patients are dependent on for care due to the lack of affordable alternatives.

Devyansh’s story is not just a personal narrative, but a reflection of the systemic neglect. Hemophilia patients deserve more than just painkillers and ice packs. They deserve consistent access to real treatment, accurate information, and a healthcare system that prioritizes their needs and health regardless of their socioeconomic status.

At the Factor Foundation, we believe that awareness is the first step toward change. By sharing stories like Devyansh’s, we hope to challenge the current misconceptions, advocate for policy reform, and build a global community, supporting those living with hemophilia.

Hemophilia may shape a person’s life, but it should never define their identity. Devyansh reminds us that behind every diagnosis is a full human being, with passions like sketching, Bollywood films, and the same dreams and interests that connect us all.

Together, we can make Hemophilia visible. Let’s join together to make equity possible.