New Delhi: Amit Ahuja, 32, is at an age when a man is usually at his productive best. But haemophilia, a genetic blood disorder, has left him frail and confined to his bed.
Ahuja had to have one of his legs amputated due to complications arising from the disease, and he is also having to bear the brunt of high treatment costs.
Haemophilia, a congenital lifelong bleeding disorder that prevents the blood from clotting properly, leads to patients bleeding internally, mostly in the joints, muscles and vital organs like the brain. In many cases, the disease leads to permanent disability.
India has nearly over 100,000 haemophilia patients, most of who face severe problems in treatment with only a few able to afford the high costs. It`s a genetic disorder, which means it is the result of a change in genes that was either inherited (passed from parent to child) or occurred during development in the womb.
"There is no facility available for blood fractionation - or the process of separating whole blood into its component parts," R.N. Makroo, Department of Transfusion Medicine, Molecular Biology and Transplant Immunology at Indraprastha Apollo Hospitals, told IANS.
During the fractionation process, blood components needed by hemophilia-affected people is separated and then transfused to haemophilia patients.
Though many people are being treated with this method, in India there is no blood fractionation unit working as of now, said Makroo, adding that the required blood components are being imported into India, pushing up treatment costs.
According to Indira Venkatraman, who heads the Delhi chapter of the Haemophilia Federation of India (HFI), the government should make treatment and medicines for haemophilia-affected people completely free.
"It is a rare disease and only 16,000 patients are registered across the country. The government can easily make treatment free for them," Venkatraman told IANS.
Delhi has 1,100 haemophilia patients.
Venkatraman, who has been working with the government closely, said that in 2007 when the HFI approached the government for setting up a fractionation unit the then health minister Anbumani Ramadoss promised to set up one in Chennai.
"The matter was also taken up at the cabinet meeting. But nothing has materialised out of it so far," she said.
Gaurav Bhardwaj, senior consultant Saket City hospital, said the quality of life of a patient can be definitely improved and life expectancy increased with proper care and treatment.
Currently, about 17,000 people in the United States have haemophilia, which affects mostly boys - with about one in every 5,000-10,000 born with it.
Girls are more rarely affected. A male can`t pass the gene for haemophilia to his sons, but his daughters will be carriers. Each male child of a female carrier has a 50 percent chance of getting haemophilia.
"Continued medical advancement means the situation is constantly evolving. In the 60s, life expectancy for haemophilia was 11 years. Though the condition is potentially life threatening in severe conditions when there is spontaneous internal bleeding, today life expectancy at birth is over 50-60 years," he said.