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Rachel V Thomas

From Treating Bleeds to Preventing Them: Experts Push For Better Hemophilia Care And Funding In India

India must move beyond treating hemophilia—a genetic bleeding disorder—only after bleeding episodes and focus on preventing bleeding and its complications, health experts said at the UP-Hemophilia Conclave 2026. 

<span>Hemophilia</span> is a rare bleeding disorder where blood does not clot properly, even for minor injuries. It is caused by an error in a specific gene on the X chromosome, leading to a deficiency or absence of clotting factors. 

The country has the world's second-largest population of people with hemophilia, who experience spontaneous and traumatic bleeding due to low or very low levels of clotting factors. 

The World Federation of Hemophilia (WFH) reported nearly 28,000 diagnosed and registered Persons with Hemophilia (PwH) in India as of 2026, including more than 24,000 with Hemophilia A. However, the estimated prevalence could be as high as 1,36,000, suggesting many cases may remain undiagnosed or misdiagnosed. In Uttar Pradesh, around 7,700 PwH are diagnosed, including approximately 5,500 with Hemophilia A. 

Although India has expanded access to modern diagnosis and treatment, including gene therapy trials and non-factor therapies (NFTs) such as emicizumab, experts said preventive care needs to be strengthened. 

<h2>Experts Call For Shift To Preventive Care </h2>

<strong>Also read: </strong><a href="https://www.healthandme.com/health-wellness/why-india-must-shift-towards-prophylaxis-care-for-hemophilia-article-154102897" data-type="tilCustomLink">Why India Must Shift Towards Prophylaxis Care For Hemophilia</a>

Hemophilia patients should be able to lead normal lives and be managed like people with chronic conditions such as diabetes and hypertension, with regular replacement treatment to prevent complications, said Prof A. K. Tripathi, Clinical Hematologist and former Director, RMLIMS, Lucknow. 

“At present, patients largely rely on reactive treatment, where therapy is given only after a bleeding episode. This approach is neither appropriate nor effective. They do not just need treatment when they bleed; they need treatment that prevents bleeding in the first place. The only way forward is to start prophylaxis,” he said. 

Repeated joint bleeding can cause lasting damage, making it difficult to walk and, in severe cases, leaving patients chair-bound or bed-bound. 

Regular replacement treatment, or prophylaxis, can protect joints and muscles and improve quality of life, said Dr S. P. Verma, Professor and Head, Department of Clinical Hematology, King George's Medical University (KGMU), Lucknow. 

“Preventive treatment through regular replacement therapy (prophylaxis) has emerged as the global standard of care. This changing treatment landscape presents an opportunity to strengthen preventive care and improve long-term outcomes for patients,” said Dr Nita Radhakrishnan, Professor and HOD, Pediatric Hematology and Oncology, Post Graduate Institute of Child Health (PGICH), Noida. 

<h2>Access And Availability Remains A Concern </h2>

Read More: <a href="https://www.healthandme.com/health-news/type-2-diabetes-affects-men-and-women-differently-new-plos-study-finds-article-156016115" data-type="tilCustomLink">Type 2 Diabetes Affects Men And Women Differently, New PLOS Study Finds</a>

Vineet Manchanda, Secretary, Hemophilia Society, Lucknow, and Manoj, Hemophilia Federation of India (HFI) North and Agra Chapter, flagged that “Factor VIII, a clotting factor that can prevent bleeding in Hemophilia patients, is very expensive, and the government hospital’s supply is erratic, making availability a major issue". 

They also stressed the importance of physiotherapy alongside newer therapies such as prophylaxis. 

The experts also highlighted the financial burden of complications, including costly knee or hip replacement surgeries. 

Access remains a major concern, with many patients travelling long distances for treatment. “Despite the resources, manpower and factors being invested, we are not achieving the desired results,” Prof Tripathi said. 

Experts also called for better use of available budgets to identify and support patients who need treatment the most. 

Organized under the aegis of the Uttar Pradesh Hematology Group (UPHG), the UP-Hemophilia Conclave 2026 was held in Lucknow under the theme ‘Uniting Care. Improving Lives.’ It brought together hematologists, physicians, researchers, pathologists, healthcare professionals from hemophilia treatment centers, policymakers and patient groups.

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India must move beyond treating hemophilia—a genetic bleeding disorder—only after bleeding episodes and focus on preventing bleeding and its complications, health experts said at the UP-Hemophilia Conclave 2026. Hemophilia is a rare bleeding disorder where blood does not clot properly, even for minor injuries. It is caused by an error in a specific gene on the X chromosome, leading to a deficiency or absence of clotting factors. The country has the world's second-largest population of people with hemophilia, who experience spontaneous and traumatic bleeding due to low or very low levels of clotting factors. The World Federation of Hemophilia (WFH) reported nearly 28,000 diagnosed and registered Persons with Hemophilia (PwH) in India as of 2026, including more than 24,000 with Hemophilia A. However, the estimated prevalence could be as high as 1,36,000, suggesting many cases may remain undiagnosed or misdiagnosed. In Uttar Pradesh, around 7,700 PwH are diagnosed, including approximately 5,500 with Hemophilia A. Although India has expanded access to modern diagnosis and treatment, including gene therapy trials and non-factor therapies (NFTs) such as emicizumab, experts said preventive care needs to be strengthened. Experts Call For Shift To Preventive Care Also read: Why India Must Shift Towards Prophylaxis Care For HemophiliaHemophilia patients should be able to lead normal lives and be managed like people with chronic conditions such as diabetes and hypertension, with regular replacement treatment to prevent complications, said Prof A. K. Tripathi, Clinical Hematologist and former Director, RMLIMS, Lucknow. “At present, patients largely rely on reactive treatment, where therapy is given only after a bleeding episode. This approach is neither appropriate nor effective. They do not just need treatment when they bleed; they need treatment that prevents bleeding in the first place. The only way forward is to start prophylaxis,” he said. Why Is Prophylaxis Important? Repeated joint bleeding can cause lasting damage, making it difficult to walk and, in severe cases, leaving patients chair-bound or bed-bound. Regular replacement treatment, or prophylaxis, can protect joints and muscles and improve quality of life, said Dr S. P. Verma, Professor and Head, Department of Clinical Hematology, King George's Medical University (KGMU), Lucknow. “Preventive treatment through regular replacement therapy (prophylaxis) has emerged as the global standard of care. This changing treatment landscape presents an opportunity to strengthen preventive care and improve long-term outcomes for patients,” said Dr Nita Radhakrishnan, Professor and HOD, Pediatric Hematology and Oncology, Post Graduate Institute of Child Health (PGICH), Noida. Access And Availability Remains A Concern Read More: Type 2 Diabetes Affects Men And Women Differently, New PLOS Study FindsVineet Manchanda, Secretary, Hemophilia Society, Lucknow, and Manoj, Hemophilia Federation of India (HFI) North and Agra Chapter, flagged that “Factor VIII, a clotting factor that can prevent bleeding in Hemophilia patients, is very expensive, and the government hospital’s supply is erratic, making availability a major issue". They also stressed the importance of physiotherapy alongside newer therapies such as prophylaxis. The experts also highlighted the financial burden of complications, including costly knee or hip replacement surgeries. Access remains a major concern, with many patients travelling long distances for treatment. “Despite the resources, manpower and factors being invested, we are not achieving the desired results,” Prof Tripathi said. Experts also called for better use of available budgets to identify and support patients who need treatment the most. Organized under the aegis of the Uttar Pradesh Hematology Group (UPHG), the UP-Hemophilia Conclave 2026 was held in Lucknow under the theme ‘Uniting Care. Improving Lives.’ It brought together hematologists, physicians, researchers, pathologists, healthcare professionals from hemophilia treatment centers, policymakers and patient groups.

from treating bleeds to preventing them: experts push for better hemophilia care in india

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From Treating Bleeds to Preventing Them: Experts Push For Better Hemophilia Care And Funding In India

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From Treating Bleeds to Preventing Them: Experts Push For Better Hemophilia Care And Funding In India

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When a Fever Is More Than a Fever: Recurrent UTIs in Children Can Put Kidneys at Risk