This year's Hemophilia Day brings overdue attention to the gender disparities in diagnosis and treatment of bleeding disorders.  With nearly 80% of cases in India remaining undiagnosed and access to preventive care still limited, the article explores how systemic gaps, stigma, and innovation intersect in the country's journey toward equitable hemophilia care

On World Hemophilia Day this year, the global spotlight turns to a long-overlooked issue: the silent suffering of women and girls with bleeding disorders. This year’s theme, “Access for All: Women and Girls Bleed Too,” underscores the urgent need to address gender disparities in diagnosis and care.

Hemophilia is a genetic disorder caused by a deficiency or absence of clotting factors—proteins in the blood that control bleeding. It is usually inherited and passed down through families via the X chromosome, which is why it primarily affects males. However, females can also experience significant bleeding symptoms, often misattributed to normal menstrual cycles. In India, where awareness about bleeding disorders is still growing, the theme resonates deeply.

“Women with bleeding disorders often face a double burden — not only are their symptoms dismissed as ‘normal,’ but there is also a deep-rooted clinical bias that sees hemophilia as a male-only condition. This leads to delayed or missed diagnoses, leaving many women to suffer silently without proper care or support.” said Dr. Roshan Dikshit, Senior Consultant, Haematology & Bone Marrow Transplant, Aakash Healthcare.

“We need to educate both healthcare providers and the public to recognize the signs early. It's crucial to integrate screening for bleeding disorders into routine health check-ups for women and girls.” Dr. Arushi Agarwal, Consultant – Pediatric Hematologist & Oncologist, Asian Hospital.

India’s Hemophilia Burden: A Call for Comprehensive Care

India bears the world's second-largest population of individuals with hemophilia, with an estimated 136,000 cases of Hemophilia A. Yet, only about 21,000 are registered patients, leaving nearly 80% undiagnosed, as estimated by the World Federation of Hemophilia. This gap is attributed to limited screening capabilities and a lack of awareness among healthcare providers.

“The underdiagnosis of hemophilia in India is alarming. Without proper screening facilities and awareness, many patients remain untreated, leading to severe complications.” added Dr. Roshan Dikshit.

Need for Preventive Treatment

A national guidelines for the treatment of Persons with Hemophilia (PwH) were launched last year by the Hemophilia and Health Collective of North (HHCN). The guidelines suggest innovative products like Emicizumab, now available in India, to be prophylactic to prevent the blood disorder.

Prophylactic treatment, which involves regular infusions to prevent bleeding episodes, is standard in developed countries, with adoption rates of 80-90%. In India, however, only about 4% of patients receive prophylaxis. The majority rely on on-demand therapy, addressing bleeds as they occur, which can lead to joint damage and other complications, according to an article published in cureus medical journal in April 2024.

“Worldwide, countries are moving towards advanced non-replacement therapy or prophylaxis care. Prophylaxis is essential for improving the quality of life for hemophilia patients. We must work towards making this preventive treatment accessible and affordable in India.” said, Dr Sweta Lunkad, Consultant - Heamtology and Bone Marrow Transplant, Jupiter Hospital, Baner, Pune.

Gene Therapy: A Beacon of Hope

In a groundbreaking development, Indian researchers at the Centre for Stem Cell Research (CSCR) at Christian Medical College (CMC), Vellore, have successfully implemented gene therapy for Hemophilia A. Five patients who underwent this therapy experienced no bleeding episodes over an extended period, marking a significant advancement in treatment.

The typical treatment for the condition requires injections at frequent intervals, with infusions of a ‘clotting factor’ to prevent bleeding. Gene therapy treatments, however, promise to be a one-time solution. A gene introduced into the body teaches it to create enough of the clotting factor that can prevent such haemorrhage.

“Gene therapy offers a promising future for hemophilia treatment in India. It has the potential to transform the lives of patients by providing a long-term solution.” added Dr. Arushi Agarwal.

Ensuring Access and Equity

As India observes World Hemophilia Day, the focus must be on bridging the gaps in diagnosis, treatment, and awareness, especially among women and girls. Collaborative efforts between government agencies, healthcare providers, and patient advocacy groups are crucial to ensure equitable access to care for all individuals affected by bleeding disorders.

“Addressing the challenges faced by hemophilia patients requires a multifaceted approach. We need to invest in infrastructure, education, and research to provide comprehensive care.” added Dr. Sweta Lunkad.

World Hemophilia Day 2025 serves as a reminder of the work that remains in ensuring that every individual, regardless of gender, has access to the care and support they need.