India's Haemophilia Crisis: 80% Undiagnosed

Haemophilia, a hereditary bleeding disorder, remains severely underdiagnosed in India, with an estimated 80% of patients outside the formal health system. The founder of a pathology lab highlights that early diagnosis is key, preventing the silent, progressive joint damage that affects nearly 90% of severe haemophilia patients by their 20s and 30s. For newborns, the risks are even higher, with a 33-fold increased chance of brain bleeds for premature infants with the condition.

Scientific advancements have led to new therapies, such as monthly non-factor injections, which can offer a near-normal life to children diagnosed at birth. Gene therapy also holds future promise. However, realizing this potential requires a coordinated national strategy.

To address this, India needs a national patient registry, standardized treatment guidelines reflecting current evidence, and improved access to newer therapies. The infrastructure and expertise exist; what is needed is the guiding architecture to connect diagnostics, clinical expertise, and advanced treatments effectively.