From Bleeds To Prevention, India’s Haemophilia Care Is At A Turning Point | World Haemophilia Day Special
With evolving treatment approaches such as prophylaxis, haemophilia patients today have a far better chance at an improved quality of life.
By Anubha Jain
Published : April 17, 2026 at 1:05 PM IST
For decades, haemophilia care in India was defined by emergency response rather than prevention. But a gradual shift is now underway that could transform outcomes for thousands living with this lifelong, often underdiagnosed disorder. On World Haemophilia Day 2026, we are turning our gaze towards the preventive and treatment aspects of this disorder.
What Is Haemophilia?
Haemophilia is a genetic bleeding disorder in which the blood does not clot properly. Normally, when a person gets a cut or injury, their body uses special proteins called clotting factors to stop bleeding. In haemophilia, these clotting factors are missing or low, so bleeding lasts longer than normal.
What Causes It?
Haemophilia is caused by mutations in genes responsible for blood clotting - specifically Factor VIII (Haemophilia A) or Factor IX (Haemophilia B), both located on the X chromosome. Patients often need to take precautions to avoid injuries that may trigger bleeding episodes. Haemophilia is an X-linked genetic disorder, meaning it primarily affects males, while females are typically carriers... though some may also experience mild to moderate bleeding symptoms. For instance, if a mother is a carrier and the father is unaffected, a son may inherit the condition, while a daughter may become a carrier.
Diagnosis Gap in India
Despite being well understood medically, timely diagnosis remains a major challenge in India. For thousands of families, haemophilia is not identified through early screening, but after repeated, unexplained bleeding episodes or irreversible joint damage has already occurred. While approximately 1,40,000 people are estimated to be affected across the country, many still remain outside the healthcare system: undiagnosed, untreated, and vulnerable. However, this is beginning to change. A significant shift is underway from managing bleeds to preventing them.
Says Dr. Tulika Seth, Professor of Haematology, AIIMS, New Delhi, "Haemophilia care has advanced from plasma-based therapies (FFP, cryoprecipitate) to wider access to clotting factors and newer treatments, significantly improving outcomes. Concerns around inhibitors with prophylaxis have reduced, alongside stronger recognition of preventive therapy in lowering complications and enhancing quality of life. Prenatal testing now enables earlier, informed decision-making for families. With government initiatives expanding diagnostics and care, the focus is on early diagnosis, proactive management, and patient empowerment."
With evolving treatment approaches (particularly prophylaxis, which refers to regular, preventive treatment given to stop bleeding episodes before they occur), patients today have a far better chance at an improved quality of life. At the same time, several states are stepping up with publicly funded programmes and decentralised care models, bringing treatment closer to those who need it most.
Why Early Detection Still Fails
“Currently in India, access to prophylactic treatment for haemophilia remains critically low, reaching less than 8% of patients and being influenced by geographical disparities,” says Dr. Thota Usha Rani, Additional Director of Medical Education and former Superintendent of Niloufer Hospital, Telangana. “For most families, the cost of treatment (if acquired privately) remains prohibitively high, making prophylaxis a realistic option for only a small fraction of those in need. This is an urgent gap that demands immediate and sustained attention,” she told ETV Bharat's Anubha Jain in an exclusive interview.
As for the reason why the disorder is significantly underdiagnosed in India, Dr. Usha Rani blames it on low awareness among general practitioners, paediatricians, and primary healthcare workers. “Early signs like easy bruising or prolonged bleeding after minor injuries are often overlooked, leading to multiple consultations before a clotting disorder is even suspected. In the absence of a family history, diagnosis is frequently delayed until a severe bleeding episode occurs. Structural gaps further compound the issue. Confirmatory clotting tests are largely unavailable at district and primary care levels, forcing patients to travel to higher centres. By then, repeated untreated bleeds often result in irreversible joint damage.” These outcomes are largely preventable with early diagnosis and timely intervention," she adds.
Says Dr. Sheikh Bilal, Head of Department, Pathology, Government Medical College, Srinagar, "Though rare, haemophilia is highly treatable with timely intervention. The biggest barrier remains low awareness, leading to underdiagnosis and gaps in diagnostic readiness. Strengthening awareness-led screening, laboratory infrastructure, and training across medical colleges and district centres is critical."
He adds that there is growing evidence supporting a shift from on-demand care to regular prophylaxis, which reduces bleeding, hospitalisation, school absenteeism, and caregiver burden while improving outcomes. A multidisciplinary care model, along with a sustained focus on awareness, early diagnosis, prophylaxis, and strengthened healthcare infrastructure, is essential for equitable access.
Strengthening Screening and Referral Systems
From a public health perspective, strengthening early screening and referral requires a dual focus on training and system design.
1. Capacity building: Capacity building is critical. Doctors, nurses, and caregivers must be trained to recognise early warning signs such as prolonged bleeding after minor cuts or vaccinations, unexplained joint swelling in children, and excessive bruising and to understand how and where to refer patients promptly. Embedding haemophilia education into medical and nursing curricula can ensure better diagnosis by future practitioners.
2. System support: Infrastructure must support timely care. This includes establishing a clear, hierarchical referral pathway and expanding access to specialised haemophilia treatment centres at the district level, not just in urban hubs. Targetted newborn screening in families with a known history, along with carrier testing, can enable identification even before the first bleeding episode, preventing long-term complications such as irreversible joint damage.
State-Led Initiatives Show Promise
On improving equitable access to care through state-led initiatives, Dr. Usha Rani said that these efforts are beginning to make a meaningful impact. Karnataka’s Kusuma Sanjeevani programme, for instance, provides free access to essential medicines and newer haemophilia therapies, reducing the financial burden on families and showing what’s possible when haemophilia is prioritised in public health policy.
However, progress remains uneven. While patients in cities like Bengaluru or Mumbai can access specialist care, those in smaller districts often face stock-outs, long travel distances, and limited provider awareness of updated treatment protocols. The programme ultimately underscores a key point: states can drive change, but ensuring equitable access across regions remains the critical challenge.
Shift Towards Preventive Care
“Haemophilia care in India should move towards a prevention-first approach rather than emergency treatment. Across much of India, haemophilia care remains crisis-driven, patients receive emergency treatment for bleeding episodes but are discharged without a preventive plan. This approach is not only medically suboptimal, ineffective but also economically burdensome,” says Dr. Usha Rani.
Says Dr. Parul Bhatt, Professor and Head of the Department of Medicine, GMERS Medical College, Sola, Ahmedabad, "Haemophilia is now better recognised, with a shift from diagnosis during major bleeds or surgery to early detection through prenatal screening, birth assessment in high-risk families, and evaluation of prolonged bleeding... even in atypical cases such as menorrhagia."
She adds that challenges persist, including limited diagnostic infrastructure, delays in sample processing, and a lack of local coagulation laboratories and trained systems at the local level to enable accurate and early diagnosis. However, diagnostic capacity is expanding, and there is increasing alignment toward preventive care through regular prophylaxis to reduce joint damage and disability. Access to prophylaxis remains uneven, but home-based therapy and simplified treatments offer promise, especially for patients in remote areas. Strengthening awareness, infrastructure, and preventive care remains key to advancing haemophilia management.
"The next step is clear: shift to prophylaxis as the default standard of care, not a limited privilege. Countries that have made this transition have seen sharp reductions in joint damage and hospitalisations. India has the patient base and clinical expertise to do the same; the challenge now is consistent implementation," adds Dr. Usha Rani.
Bridging The Affordability Gap
Access to prophylaxis in India remains below 8%, largely due to cost barriers and regional disparities. Dr. Usha Rani further said, “To improve affordability and equitable access to preventive haemophilia treatment across all socio-economic groups, the fastest way forward is to boost government procurement of haemophilia medicines and ensure a reliable supply at district-level public hospitals.” Expanding access to preventive care can reduce hospitalisations and enable patients to lead productive, fulfilling lives.
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