Healthcare professional preparing a plasma transfusion.
Most people understand haemophilia as "the disease where blood doesn't clot." That description is accurate but incomplete. Because what haemophilia really means — in the daily lived reality of patients across India — is a constant, unpredictable risk of bleeding that requires blood products to manage, month after month, sometimes week after week, for a lifetime.
And nearly every blood product that keeps a haemophilia patient alive in India comes, ultimately, from a voluntary blood donor.
Haemophilia is a genetic bleeding disorder caused by a deficiency in specific clotting factors — proteins in the blood that are essential for forming clots and stopping bleeding.
Haemophilia A — the most common form, accounting for approximately 85% of haemophilia cases — is caused by deficiency of Factor VIII (Factor 8). The gene responsible is located on the X chromosome, making haemophilia an X-linked condition that primarily affects males (with females typically being carriers).
Haemophilia B — accounting for most remaining cases — involves deficiency of Factor IX (Factor 9).
Without adequate clotting factor levels, even minor injuries can cause prolonged, potentially life-threatening bleeding. More dangerous still is spontaneous internal bleeding — particularly into joints (haemarthrosis) and muscles — which occurs without any external injury in patients with severe haemophilia.
Severity is classified by residual clotting factor level:
India's haemophilia burden is among the largest in the world — a reflection of both its massive population and historically under-detected disease rates.
Haemophilia A has a reported incidence of approximately 1 in 4,000 male births globally. In India, this translates to thousands of new cases each year. The World Federation of Hemophilia's data places India among the four highest-burden countries globally for haemophilia A.
Despite this scale, India has one of the lowest per capita usages of clotting factor concentrate in the world — a stark illustration of the treatment gap. The per capita use of clotting factor concentrate in India was reported at just 0.032 IU per person compared to 5.157 in the United States. Only one quarter of bleeding episodes in Indian haemophilia patients were treated with clotting factor concentrate — the rest went either untreated or were managed with older, less effective blood products.
The consequences of this treatment gap are severe. Studies found that:
Haemophilia, inadequately treated, destroys joints and permanently disables patients before middle age.
Haemophilia management depends on blood-derived products — and virtually all of these products begin with a donated unit of blood.
When whole blood is separated in the laboratory, the plasma fraction — containing all clotting factors including Factor VIII and Factor IX — is frozen rapidly to preserve its potency. This is Fresh Frozen Plasma (FFP).
FFP has historically been the most commonly used treatment for haemophilia in India, particularly in smaller hospitals and blood banks that do not have access to factor concentrates. A 2018 study found that 64% of rare clotting factor deficiency cases in India were treated with FFP — reflecting its widespread availability relative to more expensive alternatives.
FFP requires ABO blood group compatibility and carries risks of volume overload and transfusion reactions at the doses needed for haemophilia treatment. But it is broadly available at most licensed blood banks across India.
Cryoprecipitate is a concentrated blood product prepared by thawing FFP at controlled low temperatures. The cold-insoluble proteins that precipitate during this process are rich in:
Cryoprecipitate delivers a much higher concentration of Factor VIII per volume than FFP — making it more effective for haemophilia A management with less volume transfused. Approximately 15% of rare clotting factor deficiency cases in India were managed with cryoprecipitate, though this proportion varies significantly by institution.
Each unit of cryoprecipitate is derived from one unit of whole blood. A haemophilia patient needing treatment for a joint bleed may require multiple cryoprecipitate units in a single episode. This creates a direct and meaningful demand on the voluntary blood donor pool.
The gold standard for haemophilia treatment globally is plasma-derived clotting factor concentrate — a purified, standardised product manufactured from large pools of donated plasma. It allows precise dosing, is heat-treated to inactivate viruses, and can be administered at home.
Manufacturing factor concentrates requires enormous volumes of plasma — thousands of donations per production batch. India has domestic factor concentrate manufacturing capacity, and the government has expanded access through various programmes, but availability remains limited compared to global standards.
The most advanced treatment option is recombinant Factor VIII or IX — engineered versions of the clotting factors produced through biotechnology rather than human plasma. These are not blood-donation-dependent but are expensive and not universally accessible in India.
Less discussed than haemophilia but actually more prevalent is Von Willebrand Disease (VWD) — a genetic disorder affecting a protein called Von Willebrand factor that helps platelets stick together and carries Factor VIII in the bloodstream.
VWD affects men and women equally (unlike haemophilia, which primarily affects males) and is often under-diagnosed in women, where heavy menstrual bleeding may be the primary symptom.
Treatment for severe VWD includes cryoprecipitate and plasma-derived factor concentrates containing Von Willebrand factor — again derived from voluntary blood donations.
The journey from a voluntary blood donation to a haemophilia patient's treatment:
Every link in this chain works only if blood was donated in the first place.
India's haemophilia treatment gap is a reflection of multiple overlapping challenges:
1. Access to concentrates: Most government hospitals still primarily use FFP and cryoprecipitate because factor concentrates are expensive. The gap between what patients need and what they receive is enormous.
2. Awareness and diagnosis: Many patients in rural India are never properly diagnosed. Their joint bleeds are treated as orthopaedic problems without understanding the underlying bleeding disorder.
3. Inhibitor development: Between 8–13% of Indian haemophilia A patients develop antibodies (inhibitors) against Factor VIII — a complication that makes treatment significantly more difficult and expensive. Early access to factor concentrates, rather than cryoprecipitate, reduces inhibitor risk.
4. Free blood provision: Many blood banks — including NTR Trust in Hyderabad and Red Cross branches in Gujarat — provide blood and blood products free to haemophilia patients. This is a crucial service that depends entirely on voluntary donation.
Donating whole blood contributes to the FFP and cryoprecipitate supply that haemophilia patients in India rely on. Donating plasma (apheresis plasma) more directly feeds the plasma pool used for factor concentrate manufacturing.
AB blood type plasma donors are particularly valuable — AB plasma is universally compatible and is often used for plasma-derived manufacturing pools.
Register on TheBloodApp. Donate whole blood every 90–120 days. If you have AB blood type, consider plasma donation specifically. Your donation has a direct path to a haemophilia patient's bleeding episode — more directly than you might imagine. To find blood banks and donation camps near you across India, call the number listed in the app.
Sources: PMC — Epidemiology and Social Costs of Haemophilia India | PMC — Haemophilia Care India Tertiary Centre UP | PMC — Prevalence Intron 22 Inversion Haemophilia NE India | WHO Essential Medicines — Cryoprecipitate | Global Citizen — Blood Products India | PLOS ONE National Blood Demand Study | WHO India Blood Safety 2024
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