New Delhi: An estimated half of the world's population afflicted with Haemophilia lives in India but only 15 per cent of them have been identified so far, experts on Friday said while batting for policy intervention to take on the challenge.
Speaking at a sensitisation programme on the eve of the World Haemophilia Day, they stressed on the need to ensure adequate diagnosis and screening facilities as well as comprehensive care for patients in various regions.
"Half of the world's population with Haemophilia lives in India. At present, only 15 per cent of the total Haemophilia population has been identified in India and the rest lay undiagnosed.
"There are about 16,000 patients registered with Haemophilia in the country as yet, but we suspect that the number of people suffering the disease could be ranging 7 times more than the current registered patients," said Kanjaksha Ghosh, President of Haemophilia Federation (PHF) India
The programme was organised by the Haemophilia Federation (India) under the patronage of Union Health Ministry and saw participation from state's Principal Secretaries of Health and the Mission Directors of National Health Mission (NHM).
The panel discussed the need to have a policy intervention for making diagnosis, screening and comprehensive care for Person with Haemophilia (PwH) more accessible.
This can be achieved by developing more treatment centres equipped to handle PwH, increasing number of coagulation labs, training medical for practitioners and developing regional 'Centre of Excellence- Haemophilia Treatment Centres'.
"We would request government intervention at a macro level by means of funding, expanding infrastructural support and building trained workforce to control blood related disorders including hemophilia," said Ghosh.
Talking about the disease management in Delhi region and his mission of 'One Country, One Treatment' that focusses on providing treatment to patients in their vicinity, Dr Naresh Gupta, Head of Department of Medicine at LNJP Hospital said, "In Delhi, there are 2000 registered patients suffering from Haemophilia and cases are coming from other states as they do not have management care in their region.
"Through this initiative, we are proposing to build more treatment and care centres in regions which would create effective mechanism for diagnosis, treatment and bringing timely comprehensive care for Haemophiliacs within their reach," he said.
Haemophilia is a rare genetic bleeding disorder in which blood does not clot normally due to lack of sufficient blood-clotting proteins called coagulation factors. An affected individual may bleed spontaneously or for longer than a healthy person after injury or surgery.
