State apathy, lack of awareness add to misery

State apathy, lack of awareness add to misery

State apathy, lack of awareness add to misery

Most of us know this condition by the name of ‘the royal disease.’ Reigning families across Europe - in Spain, Germany and Russia – are known to have been afflicted by it. In fact, the mystic Rasputin famously claimed to have treated Russian empress Alexandra’s son, thereby gaining control of the royal family and the country.

What most of us, though, remain unaware of is haemophilia’s high prevalence in India, cutting across class, its diagnosis and treatment. No less than 1,22,000 Indians are estimated to be suffering from this hereditary bleeding disorder, of which not even 20 per cent are identified. Of the 32 States in India, only 16 provide free treatment and the large majority languish in the face of unaffordably high cost transfusions.

“One in every 10,000 persons across the world is a haemophiliac,” says Dr Amita Mahajan, senior consultant, Paediatric Haematology and Oncology Department, Indraprastha Apollo Hospitals. “It’s a genetic disorder where the body cannot produce certain proteins which are required to coagulate blood at the site of an injury. As a result, haemophiliacs bleed to death, most of the times not due to external bleeding but invisible internal bleeding in the body.”

Doctors believe that haemophilia is most commonly found in communities where intra-family marriages take place. All human beings are genetically predisposed to produce the requisite blood coagulant proteins but occasionally, they turn defective and the body is unable to carry out this vital function. It rarely manifests in women, who are the carriers of this disorder, while men are symptomatic and fall prey to haemophilia.

Dr Anita Kant, senior consultant, Gynaecology and Obstetrics, Asian Institute of Medical Sciences, Faridabad, says, “The sad part is that families often hide it even from doctors and don’t go for medical counselling even after having one child who is a haemophiliac. Symptoms, generally, don’t show up till a child has started to crawl and develops large bruises and blood clots in the knee.

Girls, who are mostly mildly haemophiliac, don’t realise it till they get their first
menses and the bleeding just doesn’t stop.” The treatment, in the developed world, comprises weekly shots of two proteins, Factor 8 and 9. Sadly, due to the inadequate availability and high cost of these in India, shots are given only on emergency basis leaving patients vulnerable. A majority of haemophiliacs die to due to lack of awareness of the disease. Interestingly, as many haemophiliacs die of transfusions of contaminated blood products including HIV/AIDS.

CEO of the Haemophilia Federation (India), Rtn. Wg. Cdr. (Rtd) S S Roychoudhury, informs, “We have been waging a long battle in the courts for every State Government to provide free haemophilia treatment. In a country where people can’t afford two square meals, how do you expect them to spend on treatment which can run into crores. However, across the world, Governments are facilitating treatment and haemophiliacs are leading long and quality lives.” “We hope our Government wakes up to the misery of haemophiliacs too.”