For a person with hemophilia, a simple stumble isn't just a bruise; it is a ticking clock. In India, for thousands of patients, that clock has already run out of time.
Hemophilia—a genetic disorder where blood lacks the proteins (factor VIII or IX) needed to clot—is often dismissed as a 'rare' condition. But in a nation of 1.4 billion, 'rare' is a statistical deception. India carries the second-highest burden of hemophilia in the world, yet the approach to managing hemophilia in India has not kept pace with treatment advances.
Currently, India’s health care approach is largely episodic. We wait for the disaster to happen. We wait for the joint to swell, the pain to become unbearable, or the internal bleed to turn life-threatening before we infuse the missing clotting factors. This is not health care; it is crisis management.
Every time a patient bleeds into a joint, the damage is irreversible. By the time many Indian children reach adulthood, they are already crippled by chronic pain and permanent disability. In hemophilia, a delayed treatment is often a denied future. The global standard of care has evolved to embrace preventive care for PwHA rather than a reactive approach.
How to tackle?
The solution is prophylaxis: regular, scheduled infusions of clotting factors that prevent bleeding episodes before they even start. The impact of prophylaxis is nothing short of remarkable. It transforms a child destined for a wheelchair or crutches into a student who can walk to school, play with friends and eventually become a productive member of the workforce. It shifts the narrative from surviving to thriving.
The transition to preventive care (prophylaxis) is a public health imperative. For decades, hemophilia treatment meant frequent, painful intravenous (IV) administrations—sometimes several times a week.
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For a young child, this constant poking creates a cycle of trauma; for parents, it is a logistical nightmare that dictates their lives. Fortunately, medical science has evolved. New therapeutic advances are introducing flexible dosing options and subcutaneous (under-the-skin) administrations. These innovations bypass the struggle of finding a vein in a small child or a patient who may be a high bleeder. By simplifying the delivery of medicine, we allow children to be children—carefree, active and unburdened by the shadow of their next needle.
Despite advances in medical science, access to hemophilia care in India is still uneven, and geography often plays a significant role in determining patient outcomes. Many patients—particularly in rural, peri-urban and underserved regions—remain undiagnosed or unregistered, with early signs such as frequent bruising or prolonged bleeding not always recognised as symptoms of a serious bleeding disorder.
Access to treatment can also vary considerably across states. While some states have made important progress in supporting antihemophilic drugs through public health programs, availability and procurement systems are not yet consistent nationwide. At the same time, the cost of untreated hemophilia—repeated hospitalisations, complex surgeries, long-term disability, and loss of productivity—can place a far greater burden on families and health systems than early and preventive care.
Addressing these gaps requires a more coordinated national approach. Bolstering awareness and diagnostic proficiency at district and regional levels can help ensure earlier identification of patients. Extending access to prophylaxis supports better long-term results, helping prevent joint damage and disability before they arise.
At the same time, more streamlined and reliable procurement mechanisms for antihemophilic drugs could help ensure consistent availability across treatment centres.
Though hemophilia is a rare disorder, its impact is huge on individuals and society as a whole. With the modern treatment options we have today, we can greatly improve the quality of life for people living with hemophilia across the country.
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Investing in preventive prophylactic treatment is more than just a medical need; it is a smart investment in India’s younger population. We cannot let a generation of youth be held back by disabilities that could have been avoided.
By prioritising prophylaxis today, protect the health and future productivity of the workforce to come. Simply put, the time has come to put a stop to the uncontrolled bleeding to protect the nation’s future.
(The author is the Additional Director of Medical Education, Former Superintendent, Niloufer Hospital, Telangana)
The opinions expressed in this article are those of the author and do not purport to reflect the opinions or views of THE WEEK.
