Advancing Haemophilia Care in India

Context:

India continues to face underdiagnosis and inadequate treatment of haemophilia, with only 20% of estimated cases identified, highlighting the need for wider adoption of prophylaxis-based care.

Haemophilia:

Haemophilia is an inherited, rare bleeding disorder where blood fails to clot due to deficiency of clotting factors.
Most common form is Haemophilia A, caused by Factor VIII deficiency.

Clinical Impact:

Even minor injuries can result in excessive external or internal bleeding.
Recurrent spontaneous joint/muscle bleeds may cause chronic disability.
Cerebral bleeds without trauma can be life-threatening.

Prevalence in India:

Estimated cases: 1 to 1.5 lakh based on 1 in 10,000 prevalence.
Only ~29,000 diagnosed—20% of expected—due to lack of awareness and access to diagnostics.

Prophylaxis vs. On-Demand Therapy:

On-demand therapy treats bleeding after it occurs, often after damage.
Prophylactic therapy involves regular replacement of clotting factors to prevent bleeding episodes.
Newer options include subcutaneous injections using non-factor products.

Advantages of Prophylaxis:

Prevents joint damage and disability.
Improves quality of life, reduces school/work absenteeism.
Reduces healthcare burden and long-term treatment costs.
Regarded as international gold standard in haemophilia treatment.
~90% of patients in developed nations are on prophylaxis, achieving near-normal life expectancy.