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.”