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Hemophilia not in India's health budget

India is among many developing nations, including China, Bangladesh and Pakistan, which do not allocate money for hemophilia treatment in their health budgets, a non-governmental organization has claimed.

"Hemophilia is nowhere in the health agenda of India that focuses on malaria, tuberculosis, AIDS and other infectious diseases," said Vijay Kaul, who heads the Delhi-based Hemophilia Federation of India, on the concluding day of the 24th World Haemophilia Congress in Montreal on Friday.

Hemophilia, a genetic disorder affecting only males, is caused by the absence of certain blood clotting factors.

Factor concentrates are not manufactured in India and have to imported, Kaul said, adding HFI provides an injection of anti-hemophilia factor for Rs 1,200, which is half the market price. Most hemophiliacs in India can't afford AHF.

Pleas to the health ministry to grant Rs 25 million in the budget for providing AHF through government hospitals fell on deaf ears, an HFI spokesman said.

No government hospital in India administers factor concentrates to hemophiliacs; they are referred to an HFI chapter, Kaul said.

Even the confirmatory test for hemophilia is done only at 12 centres in a country. Jammu and Kashmir, Rajasthan, Madhya Pradesh, Kerala, Himachal Pradesh, Orissa, Bihar, West Bengal and the north-eastern states have no centres for hemophiliacs, Dr Alok Srivastava from Christian Medical college in Vellore said.

Pakistan has an estimated 12,500 haemophiliacs, only a fraction of whom have been identified. The government provides no financial support and the lack of awareness, ignorance of doctors and limited availability of AHF have prevented proper haemophilia care in Pakistan, said Tahir Shamsi, a key co-ordinator of hemophilia-related activities.

Imported factor concentrates are available only in big cities with a single vial costing more than the average monthly income of a Pakistani, Shamsi said.

Bangladesh's 10,000 hemophiliacs face a similar situation as the country lacks a supply of blood factors or trained hematologists, says Nurul Islam from the Hemophilia Society of Bangladesh.

In contrast, Columbia, which has 1,300 identified hemophiliacs, provides support to all those who cannot afford treatment through the SSS (social security system). El Salvador spends around 5,500 US dollars annually on each of its 202 identified hemophiliacs while Iran fully supports its 6,000 hemophiliacs through 20 hemophilia treatment centres across the country, said Ali Akbar Tchupan of the Iranian Haemophilia Society.

Thailand, with an estimated 5,000 hemophiliacs, has several "factor assay" centres and supports the needy through SSS. It also locally manufactures blood products needed for hemophilia treatment and provides them at one-tenth the cost of imported products.

PTI

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