World Haemophilia Day: Lack of awareness remains challenge

Chennai: Haemophilia, a rare chronic disorder when blood doesn't clot normally because it lacks sufficient blood-clotting proteins,  is an incurable disease. While lack of awareness remains a major factor for fatalities due to the disorder, the expensive cost of medicines also remains a challenge in the treatment of the disorder.

On World Haemophilia Day, medicos discuss various issues related to management of hemophilic patients in the state, including inadequate availability, lack of early detection and unaffordability.

Haemophilia can only be managed by use of certain medicines called Anti Haemophilia Factors (AHFs), but the disease is usually detected in an emergency situation. There are various symptoms such as pain or swelling in joints, excessive bleeding, blood in urine or stool, heavy or prolonged periods, nosebleed or internal bleeding.

“Mostly haemophilia is detected in a person when a person suffering from the disorder bleeds for a long time after an injury. The disorder is fatal mainly because of late referrals, owing to lack of awareness of the disorder. People fail to recognise the symptoms and thus land up in emergency situations,” said Dr A. Kartikeya, senior hematologist, Fortis Malar.

Another major setback for the management of haemophiliac patients is the cost of AHFs. Though anti-haemophilia factors help to manage haemophilia, these medications are too expensive to afford a long-term treatment in private hospitals especially.

“Though government hospitals provide affordable or free treatment for haemophilia patients, a single dose of AHF can cost around '30,000 in private hospitals and the medications can cost more than a lakh as four dosages are needed ideally to stop the bleeding. In case of emergency situations, AHFs remain out of the affordability reach of a common man in private hospitals,” said Dr Kartikeya.

These medicines are not manufactured in India, are very expensive and imported from developed countries like USA, Germany and Canada. The high price is because AHFs are manufactured outside the country and are mostly imported. The government should look for ways to provide affordability and easy accessibility of these medications at all hospitals, he added. There are more than 75-80 cases of haemophilia witnessed at Madras Medical College in a month. Kilapuk Medical College and Stanley Medical College witnesses around 50 cases of haemophilia monthly say sources. “The disorder can be managed if the medical services such as blood banks and AHFs are available soon after injury. However, haemophiliac patients from rural areas, mostly land up in a critical state due to excessive bleeding and facilities such as blood banks and AHF medicines are unavailable at all hospitals,” said Dr P. Vasanthamani, dean, Kilpauk Medical College.