MONTREAL: India is among many developing nations including China, Bangladesh, Pakistan, which do not allocate money for hemophilia treatment in their health budgets, an NGO has said. “Hemophilia is nowhere in the health agenda of India which focuses on malaria, tuberculosis, AIDS and other infectious diseases”, Vijay Kaul, who heads the Hemophilia Federation of India (HFI), a Delhi–based NGO, said on the concluding day of the 24th World Hemophilia Congress here yesterday.
Hemophilia, a genetic disorder affecting only males, is caused by the absence of certain blood clotting factors which have to be injected in the patients either during surgery or during continual bouts of internal bleeding into joints and muscles which leads to pain, stiffness, aches and even disability.
Factor concentrates are not manufactured in India and have to be imported, Kaul said, adding HFI provides an injection of the anti–hemophilia factor (AHF) for Rs 1,200 which is half the market price. Most hemophiliacs in India can’t afford the AHF. Pleas to the Health Ministry to grant Rs. 2.5 crore in the budget for providing AHF through government hospitals fell on deaf ears, an HFI spokesman here said. No government hospital in India administers factor concentrates to hemophiliacs who are then referred to an HFI chapter, Kaul said. Even facilities of factor assay test, a confirmatory test for hemophilia, is available only at 12 centers in a country with a population of one billion.
Jammu and Kashmir, Rajasthan, Madhya Pradesh, Kerala, Himachal Pradesh, Orissa, Bihar, West Bengal and the north–east do not have any centers for hemophiliacs, Dr. Alok Srivastava from Christian Medical college in Vellore said.
Research for Cure
The World Federation of Hemophilia (WFH) and the World Health Organization (WHO) will take up a joint research project to find the optimum dosage of blood – derived factors needed for hemophilia treatment, WHF president Brian O’Mahony has said. Research on the issue has assumed importance as high cost of these factors has resulted in rich nations giving more dosage to their patients than what is generally required whereas developing nations have to compromise with low dosage, Mahony, who is here to attend the on–going World Hemophilia Congress, told PTI.
He said the issue had led to debates between Hemophilia experts from the developed and developing countries. Describing the issue of lower dosage of factors which has been often raised by doctors of Christian Medical College in Vellore as “Justifiable”, he said “We will have a meeting this year (with WHO) to discuss the project which may last three years”. Hemophilia, caused due to absence of certain clotting factors in blood, is treated by replacing the deficient factors using a product derived from donated blood or synthetically through genetic engineering.
Treatment of Hemophilia
Ultrasound treatment together with the application of Arnica, a homeopathic medicine known for its anti–inflammatory and pain relieving properties, could bring relief to hemophiliacs suffering muscle bleeding by making the muscles softer and healing bruises on the skin, a British doctor said today.
Muscle bleeding and resultant bruising of soft tissues (visible on the skin) are frequent symptoms of Hemophilia. Bleeding in the muscles results in local inflammation and formation of “Fiber tissues” after which the muscular region becomes stiff and weakened. Ultrasound, which produces a mechanical vibration effect in tissues at the molecular level, along with application of arnica ointment, can bring relief to hemophiliacs within a week or two, Dr. David Stephenson from Kent Hemophilia Center in Canterbury in Britain told the Congress here.
Stephenson, who applied the treatment modality on 28 patients, however, said as the low number of subjects lacked statistical significance, trial tests had to be carried out on more patients to substantiate his conclusions. The treatment, which is applied once every alternate day, stimulates tissue repair, reduces adhesion formation which stiffens the region, and improves cells’ absorbing capacity, he said. The treatment mode could also be applied to muscular bleeding in Von Willebrand Disease – another blood disorder, he added. An Indian expert has said that dosages of blood–derived factors, lower that usually administered in hemophilic patients, can be equally effective in treating the disorder, thus reducing the cost of treatment.
Dr. Alok Srivastava from Christian Medical College, Vellore, said, infusion of 250–300 international units per kilogram weight of a person (iu/kg) of factors instead of 800–1000 iu/kg, generally given in rich nations, could prove to be equally effective in treating hemophiliacs. Prohibitively high cost has always been a major barrier in the use of anti–hemophilia factors (AHF) in developing nations, Srivastava said at a session on hemophilia care in developing nations.
Using the lower dose protocol developed by CMC, doctors could successfully perform surgeries on 114 patients between 1984 and 1999 without major complications, Srivastava said. “Experience at CMC has shown that it is possible to reduce total factor consumption for major surgeries in severe hemophilia patients to around 300 iu/kg per procedure from the usual 600–1000 iu/kg used in advanced nations,” he later told.