Boosting awareness, early diagnosis, and improving access to care is crucial to fight haemophilia and other bleeding disorders in the country, said Union Minister JP Nadda on World Haemophilia Day on Thursday.
World Haemophilia Day is observed every year on April 17 to raise awareness about bleeding disorders. The theme this year is: “Access for all: Women and Girls Bleed Too”.
Haemophilia is a rare bleeding disorder where blood does not clot properly, even in minor injuries.
“On #WorldHaemophiliaDay, let’s raise awareness about haemophilia and other bleeding disorders, promote early diagnosis, and improve access to care,” said Nadda, in a post on social media platform X.
“This year’s theme — “Access for All: Women and Girls Bleed Too” — urges us to recognise the unique challenges faced by women and girls and ensure inclusive, equitable healthcare for all,” he added.
India faces a significant burden of haemophilia, holding the second-largest patient population globally, estimated at around 1,36,000 individuals.
Yet, “only 18 per cent are diagnosed, compared to 90 per cent in developed nations,” Dr. Tulika Seth, Professor – Haematology, AIIMS Delhi, told IANS.
“Haemophilia is more than a bleeding disorder — it’s a lifelong battle requiring constant care, timely diagnosis, and access to treatment,” she added.
Seth cited the lack of awareness as the major reason for delayed diagnosis, which can lead to preventable joint damage.
Each bleeding episode requires attention, and patients take a prolonged time for recovery and severe complications could occur if any bleeding is not attended.
In about 80 per cent of cases, haemophilia manifests as bleeding, most frequently involving the large joints like knees, ankles, elbows, hip, and wrist, followed by deep bleeds affecting large body muscles.
However, the most dangerous ones are bleeds affecting the head/brain, neck, chest cavity, and abdominal and pelvic cavity.
The expert noted that medical advancements are transforming the lives of patients with the condition.
While traditional treatments involved clotting factor replacement during bleeds, offering prophylaxis or preventive treatment, new non-factor monoclonal replacement antibodies like emicizumab are offering better protection with fewer infusions, especially for patients with inhibitors, Seth said.
Last year, scientists at the Centre for Stem Cell Research (CSCR) at Christian Medical College (CMC), Vellore developed the first-in-human gene therapy using lentiviral vectors for severe haemophilia A.
CMC-Vellore scientists also conducted the country`s first human clinical trial of gene therapy for haemophilia A (FVIII deficiency).
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