As the world observed Haemophilia Day on Sunday, there was not much to cheer about for the patients suffering from the inherited bleeding disorder in India where just 15 per cent are able to avail medical facilities.
Approximately one in 10,000 Indians are suffering from the rare blood disorder in the country, but about 85 per cent of the patients are either not aware of their disease or not getting timely treatment because of absence/inadequate medical facilities.
Being bleeding disorder (See Box), the only possible treatment is infusion of life saving drugs called Anti Hemophilic Factors (AHF), which is costly and neither produced nor readily available in India, Dr Naresh Gupta, Director, Maulana Azad Medical College and associated lok Nayak Hospital said.
He also stressed on awareness among not only patients but also doctors. In rural areas, many times doctors are not able to identify whether it is Haemophilia, Dr Gupta added.
“There is a need to set up more diagnosis, screening and comprehensive centres for Person with Haemophilia (PwH) for early identification and treatment at the district level.
“This can be achieved by developing more physiotherapy centres to handle musculoskeletal issues among PwH, increasing number of coagulation labs as many patients remain undiagnoised,” Dr Kanjaksha Ghosh, President, Haemophilia Federation India added.
Presently, just a few States like Tamil Nadu, Delhi, Karnataka, Maharashtra, Kerala and Gujarat have taken initiative to ensure treatment to patients. However, patients in other States continue to suffer.
According to a survey by the World Federation of Hemophilia in 2011-12, almost half of the world’s Hemophilia population lives in India and around 70 per cent of PwH do not have adequate knowledge or access to treatment.
“Ironically, at a time when the world is providing home therapy and even prophylaxis (i. e. the regular and long-term administration of clotting factor concentrate in order to prevent bleeding) for hemophilia care, we in India are struggling to provide on demand therapy,” Dr Ghosh rued.
He said that setting up coagulation laboratories for proper diagnosis would not only benefit hemophilia patients but also help cut down maternal mortality due to bleeding, curb dengue deaths as well as snake bites. However, unfortunately, such laboratories do not even exist in most of the medical colleges across the country.
The expert also pitched in for amendment in the Disability Bill to include Hemophilia in the category of Benchmark Disabilities.