Half of the world’s haemophilia population lives in India, according to a recent study done by the World Federation of Haemophilia. But only 15 per cent of the total haemophilia-affected persons in the country are diagnosed with the disorder.
“This is a matter of great concern and needs to be immediately addressed,” said P. Venu Gopal, Head of Department of Paediatrics, KGH.
Speaking at an awareness camp on the occasion of World Haemophilia Day at Red Cross Hospital on Sunday, Dr. Venu Gopal said that there were 859 registered patients suffering from haemophilia in Visakhapatnam.
Since last year, the Andhra Pradesh government had been offering support by providing plasma-derived products to haemophiliacs and opening more haemophilia treatment centres in the region, he said.
The haemophilia ward in the KGH that was opened six months ago had so far administered Rs. 50-lakh worth of factors.
Haemophilia, a congenital lifelong bleeding disorder that prevents blood from clotting, leads to internal bleeding, mostly in the joints, muscles, and vital organs like the brain. In many cases, the disease leads to permanent disability and can affect persons from every section of society. The disorder can be controlled, but not cured. However, doctors say that the quality of life of a patient can be definitely improved and life expectancy increased with proper care and treatment.
“One of the major problems that we have identified is the high susceptibility of haemophiliacs to blood transfusion-acquired diseases like HIV, Hepatitis B or C,” said Dr. Venu Gopal.
A study done by the Indian Red Cross Society revealed that 10 to 15 per cent of haemophiliacs have already contracted HIV and Hepatitis virus.
“Fresh frozen plasma can carry the virus unless tested in a proper lab. Patients should approach a proper blood bank to minimise the risk of virus,” he added.
Recently, the Red Cross Hospital acquired specialised testing equipment for nucleic acid test to detect HIV infection.
“There is a need to put an effective mechanism in place to address issues for proper diagnosis of the disease, which is on the rise, and expand the reach of the treatment to patients in need,” said Dr. Chandrasekhar, secretary, HFI Visakhapatnam Chapter.