//Haemophiliacs not getting a fair deal: NGO (LEAD)

Haemophiliacs not getting a fair deal: NGO (LEAD)

New Delhi: A leading NGO Monday accused the central government of not showing any apparent urgency to address haemophilia, a little known blood disorder, even though it was officially recognised as being as dangerous as AIDS and thalassemia.

"Because haemophiliacs are lesser in number in comparison to people suffering from other deadly diseases, the government has refrained from taking interest in the matter," said Ranjit Mookerji, executive director of the Haemophilia Federation-India (HFI), a body working for the rights of people affected by the disease.

"No budgetary allocations are made for haemophilia. We petitioned the central government through the National Human Rights Commission (NHRC) but it fell on deaf ears," Mookerjee told IANS on the occasion of World Haemophilia Day.

"Haemophilia patients deserve fair treatment from the government in keeping with the right to life incorporated in Article 21 of the constitution," said Vinod Khanna, president of the Haemophilia Society of Delhi, who is also a haemophiliac.

Except for the Karnataka government, which has agreed to reimburse the medical expenses of haemophilia patients living below poverty line, no other states have any scheme for the haemophiliacs.

According to a reliable estimate, there are some 50,000 haemophiliacs in India. HFI alone has some 12,000 haemophiliacs registered with it.

The disease is not curable, but only manageable and at a very high cost, experts pointed out.

The economic factor often deters a patient from treatment, and this might lead to permanent disabilities and even death in case of frequent bleeding, said Khanna.

"The social taboos associated with haemophilia in India affect an individual on three fronts – schools reluctantly admit a haemophiliac child, society considers haemophiliacs a burden, and financial pressures related with the treatment of the disease might ruin a family," said Khanna.

Suman Jha, a carrier of haemophilia and the mother of a haemophiliac son, said her in-laws had shunned her after they came to know of her condition. But she pointed out that she was fortunate to have a supportive husband.

"Haemophilia often bars a girl from getting married, leads to divorces and causes tremendous family unhappiness," said Jha.

Haemophilia normally passes on at birth from an affected father to a daughter, who then becomes a carrier of the disease-causing gene. There is also every possibility that the defective gene will be passed on to her children.

HFI is now focussing on stopping an affected child from being disabled by making available treatment as soon as possible.

"Almost 80 percent of children who are less than 15 years of age and registered with us are not disabled," said Mookerji.

But accepting blood urgently from donors to prevent handicaps sometimes might cost one’s life if the source of the blood is "unsafe", said Khanna. Tremendous care has to be taken to ensure that the blood is not tainted with viruses like HIV, he remarked.

Haemophiliacs have to be given the life saving drug AHF (Anti-Haemophilic Factor, which is not manufactured in India and has to be imported. This, say experts, adds to the cost of treatment.