Patients suffer as govt dithers

Shubham Jangir, 6, loves to play like other boys of his age. But unlike them, he is not allowed to fall. Shubham suffers from Haemophilia, a factor VIII deficiency, an inherited disorder, where one of the proteins needed to form blood clots, is missing or reduced, reports Jaya Shroff Bhalla.

Shubham Jangir, 6, loves to play like other boys of his age. But unlike them, he is not allowed to fall. Shubham suffers from Haemophilia, a factor VIII deficiency, an inherited disorder, where one of the proteins needed to form blood clots, is missing or reduced.

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“Every time he falls, he suffers from internal bleeding. In case there is bleeding, there is no stopping. He has to be rushed to an emergency,” said his mother Pushpa, 25.

Shubham’s father Mukesh is the only earning member in the family, with a monthly salary of Rs 4,500. “The cost of treatment for a typical episode of bleeding can go up to Rs 1 lakh, depending on body weight. The patient has to be given factor VIII at least twice a day for the entire episode,” said Dr Renu Saxena, head, haemophilia department, AIIMS.

“The costs for factor VIII are high because it has to be imported. The health ministry has a plasma fractionation unit in the offing. Once that comes through, costs would come down by one-tenth,” said Dr Saxena.

“While the fractionation unit is important, the plant alone may not solve the problem. The biggest hurdle in India is the acute shortage of raw material (plasma) to produce factors,” said Dr Naresh Gupta, professor of medicine at Lok Nayak Hospital.

“The government should also look at producing factors using bio-engineering. This will bring down costs, infections and dependence on raw material,” said Dr Gupta.

The union health ministry had set aside Rs 250 crore in 2008 to set up a plasma fractionation centre at Chennai. However, three years on, the proposal remains on paper.