World Health Organization has advanced a new resolution titled “Global Action to Advance Health Equity for People with Hemophilia and Other Bleeding Disorders”, aimed at addressing long-standing inequities in diagnosis, treatment access, and care delivery. The resolution will be presented at the 79th World Health Assembly (on May 2026) for final adoption.
This move reflects growing global recognition that haemophilia, though manageable, remains underdiagnosed and neglected, especially in low- and middle-income countries.
Global & India Burden
Haemophilia is a rare but significant public health concern:
- Affects approximately 1 in 10,000 people globally. The actual burden is likely higher due to underdiagnosis and underreporting.
- India has the second-largest burden globally, with an estimated 1.36–1.4 lakh cases. However, only 20,000–30,000 cases are officially registered. Over 80% of cases in India remain undiagnosed, indicating a major gap in healthcare access.
- World Haemophilia Day is observed annually on 17 April to raise awareness.
What is Haemophilia?
Haemophilia is a rare inherited bleeding disorder in which blood fails to clot properly due to deficiency of clotting factors:
- Haemophilia A: Deficiency of Factor VIII
- Haemophilia B: Deficiency of Factor IX
These clotting proteins are essential for forming stable blood clots. Their absence leads to:
- Prolonged bleeding even from minor injuries
- Spontaneous internal bleeding (especially in severe cases)
Repeated internal bleeding, particularly into joints (haemarthrosis), can lead to:
- Chronic pain
- Joint deformity
- Long-term disability
Symptoms and Clinical Features
Severity Classification: Mild, moderate, severe (based on clotting factor levels). The severity of haemophilia determines its presentation:
- Severe cases: Frequent spontaneous bleeding episodes
- Mild cases: Symptoms appear after injury, surgery, or dental procedures
Common symptoms include:
- Prolonged bleeding
- Easy bruising
- Frequent nosebleeds
- Joint bleeding (most characteristic feature)
Complications:
- Progressive joint damage (leading cause of disability)
- Life-threatening bleeding (e.g., brain hemorrhage)
Diagnosis and Challenges
Diagnosis is based on blood tests measuring clotting factor levels:
- Complete Blood Count (CBC)
- Clotting time tests (aPTT, PT)
- Factor activity assays (Factor VIII/IX levels)
Key Challenges
- Limited diagnostic infrastructure
- Absence of robust national registries
- Underreporting and late detection
- Patients often diagnosed only after complications appear
A study published in The Lancet highlights that many cases remain hidden due to these systemic gaps.
Treatment and Management
There is no permanent cure, but effective management is available:
Standard Treatment: Clotting factor replacement therapy
- Used to stop bleeding episodes
- Also used preventively (prophylaxis). Prophylaxis is a regular preventive treatment to avoid bleeding episodes
Comprehensive Care
- Managed through Hemophilia Treatment Centers (HTCs)
- Multidisciplinary support including:
- Hematologists
- Physiotherapists
- Nursing care
Advanced Therapies
- Non-factor therapies (e.g., emicizumab)
- Gene therapy (aims long-term correction by enabling clotting factor production)