World Haemophilia Day will be observed on April 17. India’s fight against the disease needs many fixes.

Picture this: A 10-year-old child from a small village in India, with swollen and stiff joints, bleeds at the slightest injury. Every time this happens, panicked parents travel to a distant hospital. If they’re lucky, the doctors there know why the child is prone to regular bleeds. If they are not, that’s a far more tragic story. Let’s assume that the doctors know the child is one of the roughly 1,300 children who are born with haemophilia every year in India. The 10-year-old gets an emergency infusion which is episodic or on demand treatment. This form of treatment is often not enough if the bleeding recurs, which is likely if the child has severe haemophilia. This requires escalating treatment to replacement factor therapy, a more intensive intervention. The reality of families living with haemophilia is agony that plays out in multiple ways: watching the patient suffer, a mountain of health care bills, and uncertainty about the patient’s life span.

Haemophilia is a lifelong genetic bleeding disorder that causes repeated and........

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