West Bengal Hemophilia Conclave 2025 Calls for Prophylaxis to Become the Standard of Care for People with Hemophilia

 

Kolkata : Leading hematologists, government representatives, and patient advocates came together today at the West Bengal Hemophilia Conclave 2025 organised by HEMCare (Hemophilia Care & Research), held at the Hyatt Regency, Kolkata, to underline the critical need to adopt prophylaxis as the standard of care for people living with hemophilia (PwH) across India.

 

The day-long conclave, hosted under the leadership of Prof. Dr. Maitreyee Bhattacharyya, Director, Institute of Hematology and Transfusion Medicine, brought together key voices in hemophilia care and policy, uniting on one message: preventive care must replace reactive treatment to truly improve quality of life and reduce long-term disability for PwH.

 

Prof. Dr. Maitreye Bhattacharyya, Director, Institute of Haematology and Transfusion Medicine, Kolkata emphasized the transformational role of novel therapies in haemophilia care. “India has made notable progress in hemophilia care, and there is a growing shift from episodic treatment to preventive strategies across several centers. West Bengal, in particular, has adopted a prophylaxis-driven approach. However, despite this progress, several challenges remain. While the frequency of bleeding episodes has decreased, a corresponding improvement in overall quality of life is yet to be fully realized.

 

The advent of Emicizumab has significantly changed the clinical trajectory for many patients with Haemophilia A. Its ease of administration and reduced bleeding frequency have led to a measurable improvement in quality of life, allowing children to attend school regularly and adults to live with fewer limitations. In India, where only 20,000 haemophilia patients are officially registered, the estimated number exceeds 1.5 lakhs. Emicizumab offers hope, for both with inhibitors or without inhibitors.”

 

Prophylaxis—through non-factor replacement treatment like Emicizumab has long been recognized as the global gold standard in haemophilia care. However, in India, most patients are still treated only after bleeding episodes occur, often leading to irreversible joint damage and disability.

 

Echoing the need for alignment with global gold standards, Prof Dr Prakas Kumar Mandal (DM Haematology), Dept of Haematology, NRS Medical College and Hospital, Kolkata, added "Prophylaxis must become the norm in haemophilia care—not the exception. Every bleed counts. Whether it’s a joint bleed, a muscle bleed, CNS bleed or an eye bleed threatening vision—each incident contributes to long-term, often irreversible, damage. Inhibitors to Factor VIII, delays in initiating treatment, and limited access to prophylaxis continue to compromise outcomes for patients in India.

 

Despite advances such as Extended Half-Life (EHL) products, Emicizumab, and recombinant factors, the real-world access to these innovations remains worryingly low. As a result, India’s prophylaxis adoption stands at just 4–5%, while countries aligned with global gold standards achieve rates close to 95%. The impact is stark: each untreated bleed costs patients up to 15.5 days of lost health. Over time, this contributes to significant joint damage, reduced mobility, and a devastating 23-year loss in life expectancy for those with severe haemophilia.

 

Zero bleeds must be our shared goal. With early diagnosis, timely intervention, and affordability of care, we can prevent complications before they start. No child or adult should face disability or death when effective treatment exists. The focus now must shift from reactive care to preventive action—where prophylaxis is available for all, not just a few."

 

During the session titled Voices That Matter: Driving Improvements in Quality and Access, Mr. Ajoy Roy, Secretary, Hemophilia Society, Durgapur Chapter, reflected the lived realities of patients living with Hemophilia: “For far too long, persons with haemophilia in India have battled not just the condition, but the systemic hurdles surrounding timely diagnosis, access to consistent therapy, and social awareness. As patient advocates, our role is to ensure that their voices are not lost in the noise of government policies and protocols. True progress means moving beyond episodic treatment to structured, state-supported prophylaxis—where care is proactive, not reactive.”

 

Resonating this from the same session, Mr. Prasanta Mal, Treasurer, Hemophilia Society, Kolkata Chapter, added, “Living with hemophilia shouldn't mean living with limitations. Families often endure emotional and financial strain due to the unpredictability of bleeds. With prophylaxis, especially using newer therapies, we have an opportunity to shift the narrative—from managing crisis to ensuring normalcy. The government must recognize this as an investment in human potential.”

 

Bringing in a broader system-level perspective during the policy and advocacy panel, Prof. Dr. Nanda Kishore Alva, Dean, ESIC Joka, emphasized the importance of medical education and institutional support. “It is imperative that our medical institutions not only treat but also educate. Training healthcare professionals and investing in infrastructure for prophylaxis must go hand in hand to build a sustainable care model.”

 

The conclave strongly advocated for the inclusion of prophylaxis within public health frameworks, particularly under the National Health Mission (NHM), to ensure equitable access and drive improved patient outcomes. The Conclave reinforced the need for continued collaboration among stakeholders to establish a robust framework for haemophilia care across West Bengal.