World Haemophilia Day: Raising Awareness and Strengthening Care Systems

Credit By: SYED MAJID QUADRI SYED MAJID QUADRI

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• 16 Apr 2026

World Haemophilia Day is not just about awareness it is a call to action

World Haemophilia Day is observed annually on April 17 to raise global awareness about haemophilia and other inherited bleeding disorders. Established in 1989 by the World Federation of Haemophilia (WFH), the date commemorates the birthday of its founder, Frank Schnabel. The day serves as a vital platform to advocate for improved diagnosis, treatment, and equitable access to care for individuals living with bleeding disorders.

Global and National Perspective

According to the latest WFH Annual Global Survey, more than 273,000 individuals with haemophilia have been identified and registered worldwide. However, experts estimate that this accounts for only 25% to 34% of the actual global population, highlighting a significant gap in diagnosis particularly in low- and middle-income countries. Recent studies suggest that the true global prevalence may range between 830,000 and 1.1 million people living with haemophilia.

In India, approximately 28,000 patients are registered with the Haemophilia Federation of India (HFI) and the National Haemophilia Registry. In Jammu and Kashmir, around 467 patients are registered in the Kashmir Valley, while nearly 200 patients are registered in the Jammu division.

Understanding Haemophilia

Haemophilia is a genetic bleeding disorder caused by the deficiency of specific clotting factors:

Haemophilia A: Deficiency of Factor VIII (accounts for about 85% of cases).

Haemophilia B: Deficiency of Factor IX.

Other rare forms: Involving deficiencies of Factors VII, X, XIII, V, and XI.

Despite differences in factor deficiencies, patients experience similar symptoms, including prolonged or spontaneous bleeding. Treatment involves replacing the missing clotting factor through targeted therapy.

Severity and Associated Risks

Haemophilia is classified into mild, moderate, and severe forms:

Severe and Moderate Haemophilia Patients are at constant risk of spontaneous bleeding.

Mild Haemophilia Bleeding typically occurs after injury or trauma.

Approximately 85% of bleeding episodes in severe cases occur in joints and muscles, often leading to permanent disability. The remaining 15% involve internal bleeding in critical areas such as the brain (intracranial), gastrointestinal tract, throat, neck, and iliopsoas muscle conditions that can be life-threatening.

Advancements in Treatment

The standard of care involves anti-homophilic factor replacement therapy. According to WFH guidelines, patients with severe and moderate haemophilia should receive prophylactic treatment—regular administration of clotting factors, typically three to four times per week—to prevent spontaneous and life-threatening bleeding chances.

Recent advancements in medical science have introduced non-factor therapies, including monoclonal antibodies, which may be administered weekly or even monthly. These therapies have significantly improved quality of life, and increased life expectancy, reducing spontaneous bleeding by up to 85% and life-threatening episodes by nearly 99%.and reducing the frequency of injections and improving treatment adherence. Currently, these treatments are primarily available for haemophilia A and B and are accessible in India as well.

Additionally, Extended Half-Life (EHL) factor products are now available. These have a longer duration of action compared to plasma-derived anti-haemophilic factors.

Challenges in Treatment Access

Despite the availability of free treatment in selected government hospitals in India, a major challenge remains the irregular supply of life-saving anti-haemophilic drugs. Such inconsistencies is lead to severe consequences, including permanent joint damage and increased risk of mortality.

In the absence of these lifesaving essential drugs, patients are often treated with Fresh Frozen Plasma (FFP)—an outdated approach introduced during World War II. While FFP may provide temporary relief, it is not an adequate substitute for the Anti haemophilic drugs and carries significant risks, including blood-borne infections. 

When the anti-haemophilic drugs were not available free of cost in hospitals In the Kashmir Valley, nearly 100 patients were historically infected with Hepatitis C and B, and one patient with HIV due to unsafe treatment practices involving FFP. In 2025, Jammu and Kashmir faced a prolonged shortage of Factor IX for nearly a year, forcing patients to rely on FFP placing many lives at risk.

A Positive Step Forward

Encouragingly, for 2026, the Government of Jammu and Kashmir, the Medical Education Department, and the administration of Government Medical College (GMC) Srinagar have taken important steps to address these challenges.

Drug projections for anti-haemophilic drugs 2026/27 have been approved, and with the intervention of the Honourable High Court, there is renewed hope that future shortages of life-saving medications will be prevented.

There is a critical need to allocate a separate annual budget for haemophilia drugs. The procurement process must also be improved, as unnecessary delays often put patients’ lives at serious risk. Haemophilia is a medical emergency, and its life-saving medications must be included in the essential drug list.

The Need for Comprehensive Care

While progress has been made, there remains an urgent need to establish a comprehensive haemophilia care system. Key requirements include:

A dedicated Comprehensive Treatment Centre (CTC).

On-site radiology facilities for immediate diagnosis of bleeding.

A specialized physiotherapy center for long-term rehabilitation.

Availability of diagnostic reagents to avoid delays in testing.

Currently, patients often face long waiting times in general radiology departments or are given delayed appointments, situations that can be life-threatening in emergencies. Haemophilia must be treated as a medical emergency requiring immediate diagnosis and intervention.

A Call to Action

World Haemophilia Day is not just about awareness—it is a call to action. While meaningful progress has been made, particularly in Jammu and Kashmir, strengthening healthcare infrastructure and ensuring uninterrupted access to life-saving treatments remain critical.

It is hoped that the Government of Jammu and Kashmir, along with the administrations of GMC Srinagar and GMC Jammu, will continue to prioritise this pressing issue and take concrete steps toward building a comprehensive and responsive haemophilia care system. Only then can patients ensure a safer, healthier, and more dignified life for all individuals living with haemophilia.

(The author is the President of the Haemophilia Society of Kashmir)