A few days back I came across a unique situation when one of my acquaintances, a hematologist by profession, introduced me to a school teacher hailing from a village in north Kashmir just near Line of Control. The school teacher narrated his painful stories, which, I think, are unheard of so far by a common man.
Some 15 years back he was a contended man as he had all those means which are essential for living a peaceful and prosperous life. But things took a U-turn after he was blessed with a son. It was the onset of miseries for him when the new born was diagnosed with hemophilia. During all these years he lost most of his assets – land, jewelry, etc. on the treatment of his son. The school teacher told us heart rendering incident about around 12 children in his village who too were hemophilic and died for want of medicinal support. Today there are six hemophilic children left in the village.
Hemophilia is a hereditary genetic disorder that impairs the body’s ability of blood clotting or coagulation. Hemophillia A (clotting factor VIII deficiency) is the most common form of the disorder. The hematologist told me that hemophilia occurs mostly in males. Only under rare circumstances do females actually have hemophilia.
The school teacher sought my attention to an eight-year-old boy who was ‘cautiously’ watching others of his age playing football on the roadside. At an age when children play rough and tumble games, this boy, named, Mansoor 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. He is one among the few unlucky male children suffering from hemophilia. He knew even a small nick meant death for him. The emotional and physical trauma of being a hemophiliac was visible on the face of this innocent boy.
The most common treatment given to these patients has been the infusion of fresh frozen plasma (FFP). But that has affected many people and created other dreadful diseases like HIV and Hepatitis. Many such patients have developed frozen joints and are now dependent on crutches and wheel chairs.
Basically, these hemophilic patients need injections of Factor VIII, which is a costly medicine and the parents of these children are too poor to afford it. The on-demand requirement of this injection per hemophilic children is 10,000 international units per annum. The cost of per unit is Rs.12 and varies according to the market scenario.
In the past, the parents of these children have been managing the injection by disposing of their valuables. Today, they have almost exhausted their valuables and have no such means to afford this injection. Even as the villagers with the help of a local doctor approached many organizations like UNICEF, WHO, Red Cross and other non governmental organizations for assistance, no one bothered to support them.
We have hemophilic society in Kashmir and the data with them reveals that there are 328 hemophilic patients in Kashmir. The organization has been keeping track of these patients, but cannot meet their requirements fully for lack of financial resources. The state government has recently kept this injection available free of cost at SMHS hospital only. The patients in Kupwara, Baramulla or any other far flung areas at the time of bleeding have to be shifted to Srinagar for treatment, which is a huge risk for them and the patient can die an the way to hospital. So the need is to make this injection available in every district of the state.
Nothing has been done to save these ‘blood lovers’ from the dreadful disease. There is much to resolve with regard to hemophilia care. We must have Hemophilia Treatment Center (HTC) where hemophiliacs and other bleeders can go for treatment and medication. However, there lies a huge responsibility on the civil society. We need to contribute towards welfare of these hemophilic patients, particularly to those who have no means to fall back upon for treatment. Our social organsiations and non governmental organizations need to run a humanitarian programme that donates clotting factors to them. We only can save these poor hemophiliacs and bleeders from the clutches of death. Understanding and awareness of this disease can help hemophiliacs live normal healthy lives. Government needs to allocate money for hemophilia treatment in the coming budget and should include it in its health agenda.

Lastupdate on : Fri, 16 Sep 2011 21:30:00 Makkah time
Lastupdate on : Fri, 16 Sep 2011 18:30:00 GMT
Lastupdate on : Sat, 17 Sep 2011 00:00:00 IST