Why Hemophilia Care in India Lags Behind Globally, Expert Reveals: World Hemophilia Day

Hemophilia is a rare genetic bleeding disorder, usually inherited, wherein blood cannot clot properly due to low levels of clotting factors, causing prolonged bleeding or spontaneous internal hemorrhages. Symptoms include easy bruising, joint pain/swelling, and excessive bleeding. While not curable, it is treated with factor replacement therapy and gene therapy.India has the world's second-largest population of hemophilia patients, with estimates suggesting over 70,000 to over 1,36,000 cases of Hemophilia A and B. However, while around 13,000 to 19,000+ patients are registered, many remain undiagnosed.This World Hemophilia Day, Dr Dr Bilal Ahmed, Prof and Head, Government Medical College, J&K exclusively told Healthandme that the primary reason why thousands of Indians remain undiagnosed and unable to access proper care is due to budget constraints, lack of awareness among policymakers, and the need for technocrats to advocate boldly for regular replacement therapy. Despite having the second-largest hemophilia population, only 9-10 percent receive treatment as compared to 80-100 percent in some European countries. The expert explained: "Money plays an important role. Every center in India has, at their own level, their own policymakers and the people who are at the helm of affairs. We are the second home for the hemophilia and we can change the lives of these people by having the regular replacement but it is all depending upon the perception of individual centers."He also noted that the government needed to introduce policy reforms endorsing regular replacement therapy as the gold standard to help ensure equitable access to patients. The median age at diagnosis for severe hemophilia in India stands at 60 months—five full years—compared to under 12 months in high-income countries. This delay is not just a matter of time but one that poses a risk of serious clinical consequences. Late diagnosis often means repeated, unmanaged bleeding episodes during early childhood, particularly into joints, before appropriate treatment begins.Early Warning SignsThe three types of this condition include :Hemophilia A: This is the most common type. You may develop this condition because you have low levels of clotting factor 8 (factor VIII).Hemophilia B: You may have this type if you don’t have enough clotting factor 9 (factor IX).Hemophilia C: Hemophilia C is also known as factor 11 (factor XI) deficiency. It’s the least common type of hemophilia.Recognizing the early warning signs can be critical in preventing long-term complications. Symptoms such as recurrent nosebleeds, heavy menstrual bleeding in females, and prolonged bleeding after minor injuries are often overlooked or dismissed. Common signs include: Bleeding into the joints. This can cause swelling and pain or tightness in the joints. It often affects the knees, elbows, and ankles.Bleeding into the skin (which is bruising).Bleeding into the muscle and soft tissue, which can cause a build-up of blood in the area (called a hematoma).Bleeding of the mouth and gums, including bleeding that is hard to stop after you lose a tooth.Bleeding after circumcision.Bleeding after having shots, such as vaccinations.Bleeding in the head of an infant after a difficult delivery.Blood in the urine or stool.Frequent and hard-to-stop nosebleeds.The condition is much more common in people who were born male since they can get it with a change to the gene on one X chromosome. People who have a family history of hemophilia are also at higher risk.Treatment OptionsThe treatments for haemophilia have never been more effective, but they work only for patients who have been diagnosed. In a condition where every missed bleed moves a joint closer to permanent damage, the most important clinical act is also the most basic one: recognition.The main treatment for severe hemophilia involves replacing the clotting factor you need through a tube in a vein. This replacement therapy can be given to treat a bleeding episode in progress. It can also be given on a regular schedule at home to help prevent bleeding episodes. Some people receive continuous replacement therapy.Replacement clotting factor can be made from donated blood. Similar products, called recombinant clotting factors, are made in a laboratory, not from human blood.

Why Hemophilia Care in India Lags Behind Globally, Expert Reveals: World Hemophilia Day

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Why Hemophilia Care in India Lags Behind Globally, Expert Reveals: World Hemophilia Day

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