Equity in bleeding disorder care isn’t optional — it’s long overdue – Firstpost

As India observes World Hemophilia Day 2025 under the theme “Access for All: Women and Girls Bleed Too,” the spotlight turns to persistent gender disparities in the diagnosis and treatment of bleeding disorders. From systemic stigma and misdiagnosis to limited access to preventive therapy, the country continues to grapple with long-standing challenges, especially for women and girls, whose symptoms are often overlooked or dismissed.

Hemophilia is a genetic disorder caused by a deficiency or absence of clotting factors—proteins in the blood that control bleeding. It is typically inherited and passed through families via the X chromosome, which is why it primarily affects males. However, females can also experience bleeding symptoms, which are often misattributed to normal menstrual cycles. In India, where awareness of bleeding disorders is still evolving, this year’s theme strikes a particularly relevant chord.

This year’s Hemophilia Day brings long-overdue attention to the inequities in diagnosing and treating bleeding disorders. With nearly 80% of cases in India remaining undiagnosed and access to preventive care still limited, Firstpost spoke to experts to understand how stigma, systemic gaps and innovation intersect in India’s pursuit of equitable hemophilia care.

“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,” added Dr Arushi Agarwal, Consultant – Pediatric Hematologist & Oncologist, Asian Hospital.

India’s Hemophilia burden: A call for comprehensive care

India has the world’s second-largest population of individuals with hemophilia, with an estimated 136,000 cases of Hemophilia A. Yet only about 21,000 patients are registered, leaving nearly 80% undiagnosed, according to the World Federation of Hemophilia. This gap stems from 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,” said Dr Roshan Dikshit.

Need for preventive treatment

National guidelines for the treatment of Persons with Hemophilia (PwH) were launched last year by the Hemophilia and Health Collective of North (HHCN). These guidelines recommend the use of innovative products like Emicizumab, now available in India, as prophylactic therapy to prevent bleeding episodes.

Prophylactic treatment—which involves regular infusions to prevent bleeding—is standard in developed countries, where adoption rates are as high as 80–90%. In India, however, only around 4% of patients receive prophylaxis. The majority still rely on on-demand therapy, treating bleeding episodes as they occur, which can lead to joint damage and other complications, as highlighted in an article published in the Cureus medical journal in April 2024.

“Worldwide, countries are moving towards advanced non-replacement therapy and prophylactic 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 – Hematology and Bone Marrow Transplant, Jupiter Hospital, Baner (Pune).

Gene therapy: A beacon of hope

In a groundbreaking development, 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 the therapy experienced no bleeding episodes over an extended period, an important step forward in treatment.

Traditional treatment requires frequent infusions of clotting factor to prevent bleeding. Gene therapy, however, offers a potential one-time solution by introducing a gene that enables the body to produce enough clotting factor on its own.

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

Collaborative efforts between government agencies, healthcare providers, and patient advocacy groups are essential 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,” said Dr Sweta Lunkad.