Hemophilia Not On India’s Health Budget
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.
Kudos to India
The World Federation of Hemophilia (WFH), has apraised the presence of a strong national–level hemophilia body and a well–organized network of treatment centers in India, saying due to these, 12% of all probable hemophiliacs in the country get accurately diagnosed. Compared to this, in Indonesia and China, which have higher gross national products than India, only three and two per cent respectively of all hemophiliacs are correctly diagnosed, WFH president Brian O’Mahony said here yesterday.
“Their resources are limited, but they make very efficient use of what they have,” O’Mahony told the World Hemophilia Congress referring to the Delhi based non–governmental organization, the Hemophilia Federation India (HFI).
A Nick Could Mean Death
By A Staff Writer
At an age when most six year old play rough and tumble games, Ketan Phadke cannot indulge in any such activity. He cannot jump or run and must keep away from all hard surfaces and sharp edges for a nick or a scrape could turn life threatening. Ketan is one the few unlucky male children suffering from hemophilia, a genetic disorder wherein the blood does not clot. As a result even a small scrape could result in profuse bleeding and if unchecked, could result in the patient bleeding to death.
There are more children like Ketan who must suffer both the emotional and physical trauma of being a hemophiliac. The disorder occurs only in males and women are carriers. Says Rashid Leelani of The Hemophilia Society of Maharastra, Pune Chapter, “It is easier for children and their parents in bigger cities. In villages, the kids die before they can even reach us, or they become crippled. And sometimes a family might never even come to know that their son died because he was a hemophiliac.”Leelani, himself a hemophiliac knows how tough life can be for someone growing up with hemophilia. Says Hemant Padke, Ketan’s father, “We have to child–proof the house. The child must avoid contact with all hard surfaces and sharp edges like knives, so we have to take precautions. There can be heavy bleeds with just a milk tooth falling out, and if the bleeds aren’t taken care of, the child can bleed to death.”
Then, there is the psychological trauma as well, especially when the children become adolescents. “These kids often feel that they are a burden on their parents because of the expensive medication and treatment which must be taken rather often. But most kids don’t really survive that long either,” declares Leelani simply. The truth is harsh. And life is full of occasional hurts and falls. Even a nick of the shaving blade can be dangerous. Besides, the medication required to counter this can become prohibitively expensive. Then there can also be internal bleeding which often occurs in the joints which feel hot and spongy because of the blood which has accumulated there. So patients must also undergo physiotherapy to prevent their muscles from being under utilized and to prevent bleeds.
“There is no cure as such, but the disorder can be controlled. Hemophilia occurs when either Factor 8 or Factor 9 – factors necessary for the clotting of blood plasma are deficient or missing. As a result, the blood doesn’t clot when there is a cut and keeps flowing. When the same factors are administered in the form of medication, the blood clots and stops flowing immediately, than it’s a miracle,” says Leelani. But the Factor 8 medicine which is imported is expensive. It costs Rs. 5 per unit and since the number of units to be injected depends on the body weight of an individual, an initial shot of a 1000 units costs Rs. 5000. For a minor operation like a tooth extraction, the costs of medication could go up to Rs. 10,000 on an average. Not many people can afford that. Which is why the Hemophilia Society also keeps a stock of Factor 8 shots available to patients at cheaper rates. “Sometimes, there can be a deficiency in the stock. When the war in Bosnia was going on, much of the stock was diverted there, so we faced a crunch here. Then, there might be policy shifts advocating more stocks to other developing countries. So the demand and supply never really balances. Then dollar fluctuations also have to be taken into account,” says Leelani.
There isn’t exactly a government policy here either. “When a disorder occurs in only one in 5000 males, the numbers don’t really match up to people with heart disease or pertinent factors such as rural health which are more important. There are roughly 8000 patients in Maharashtra” says Leelani. And for those who develop an inhibitor effect to the Factor 8 medicine, there is almost no hope. An inhibitor occurs when a patient who has been taking Factor 8 develops a resistance to it and continues to bleed. Seven–year–old Amol Patil is an unlucky child who developed an inhibitor. The medication to counter this is so expensive that his father cannot afford it. Feiba costs $1 a unit and tries to bypass the inhibitor and attack the wound directly. Even then there is no knowing that it will work for Amol. “What can I do? I’ll try to save him as much as possible. But a one time administration, costs Rs. 70,000. He has stopped going to school now because there is a lot of internal bleeding and even moving his limbs is painful. I don’t know how long he will survive,” says Tulsidas Patil, Amol’s father. This has been a double tragedy for Amol’s family. Amol lost his three–year–old brother because there was no awareness about hemophilia ten years ago.
The disorder does cause a traumatic upheaval in the family’s life. But newer technologies are being researched and some are proving to be beneficial. Radioactive Cynometomy burns off the spongy tissue inside the joints which are prone to heavy bleeding. But this can only be performed once. Then with any blood related disorder, there are the dangers of infection. “The blood is screened for HIV. But Hepatitis B and C could be transmitted,” says Leelani. It’s a risk these patients must take. There might be no cure, but as Leelani puts is, “Awareness can help control it to a large extent and one can learn to live with it.”