There is not much hope for the country's 1.2 lakh patients suffering from haemophilia, the genetic lifelong bleeding disorder, as a majority of them face problems in accessing treatment which is beyond their pocket.
In Persons with Hemophilia (PWH), blood does not clot normally due to the absence of clotting proteins called Factors. Infusion of life saving drugs i.e. Anti-Hemophilic Factor (AHF), is the only treat, but it is costly as it is neither produced nor readily available in India. Delay can be fatal or result into permanent disability.
SS Roy Choudhury, CEO, Haemophilia Federation India (HFI), said: "The Government has not yet set up any facility for blood fractionation - or the process of separating whole blood into its component parts. As a result, the PWH have to depend on the costly imported blood components for transfusion purpose.
"Moreover, presently only around 12 States are providing subsidised treatment at a few districts."
Around 70 per cent of the patients receive inadequate treatment, no treatment, or treatment does not work because the patient does not respond to the drug, which again are extremely expensive, agreed R N Makroo, Director, Transfusion Medicine, Indraprastha Apollo Hospitals.
"However, it is important to take measures to make the drugs affordable and accessible to patients, especially to those in rural areas where the awareness levels are very low."
Hospital data indicates that patients in India suffer from preventable morbidity because doctors do not get adequate exposure in the context of suboptimal availability of infrastructure for diagnosis or treatment of PWH. This is one of the major reasons for the majority of cases remaining undiagnosed, said Naresh Gupta, Head, Haemophilia Centre at Maulana Azad Medical College and lN Hospital in Delhi.
India has only 12 per cent diagnosed haemophiliacs, 55 centres and a per capita consumption of Factor of 0.01 units.
Gupta pointed out that since girls who are rarely affected but are carriers for the gene for haemophilia, it is important that they should undergo a screening test before deciding to plunge into marriage.
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 per cent chance of getting haemophilia, he explained.
Roy Chaudhary said, "To ensure employment and other benefits to PWH, we have sought inclusion of Haemophilia in 'The Draft Rights of Persons with Disabilities Bill, 2012' while severe Haemophilia in Benchmark Disabilities."