17 April 2012
By Umesh Isalkar
There was no injury, yet sixyear–old Sujit (name changed) developed bleeding inside his brain. His is a case of classic haemophilia where the patient bleed from anywhere in the body. Such persons must spend extra to get Anti–Haemophilia Factor (AHF) injections to cover the clotting deficiency.
"Sujit came to us on Monday morning. On suspicion of intracranial (inside the brain) bleeding, he was immediately infused 500 units of AHF injection and referred to D Y Patil Medical College and Hospital for further investigation and management," said paediatrician Sunil Lohade, vice–president of Haemophilia Care Centre at Lohade Hospital in Chinchwad.
Over the next 10 days, he will need about 7,000 units of AHF injection, costing about Rs 70,000; his parents are poor and cannot afford his treatment, Lohade added.
Sujit will get his injections for free from the Haemophilia Society of Maharashtra, Pune chapter. "However, there are around 700 haemophilics registered with society and free AHF to each of them every time they need it is not possible, Lohade.
For the last 20 years, the society has been supporting haemophilics in western Maharashtra without any financial assistance from state government. Philanthropic organisations and generous individuals have helped purchase of AHF for poor haemophilics.
"There is little awareness about this disorder, which affects one in every 10,000 men globally," Anil Lalwani, ex–president of Haemophilia Federation of India, said.
Lalwani, a haemophilic, set up the Pune chapter in Chinchwad in 1992. It is one of 64 chapters in India affiliated to the New Delhi–based Haemophilia Federation (India) which is linked to the World Federation of Haemophilia (WFH).
Though haemophilia seldom crops up in women, they are often carriers. Care and precaution has to be taken when there is family history of haemophilia which has no cure, but treatment is crucial for the survival of a person with haemophilia.
“In a haemophilic, the clotting factor may be less than one per cent. About 25 per cent of PWHs suffer from deficiency in Factor IX (known as the Christmas disease), while the rest suffer from deficiency of Factor VIII or Classic Haemophilia," Lohade said.
An AHF injection costs Rs 10 per unit and a person with haemophilia requires 1,000 units every alternative day depending upon the impact of the injury or the severity of the disease. Hence, caring for a single afflicted person could cost a family around Rs 1 lakh a year.
Pharmaceutical companies extracted AHF through fresh blood, but ran the risk of getting infected blood. The practice has been stopped now. HFI campaigned for synthetic preparation of AHF and made them available at subsidised rates. This prevented HIV infection among PWH.HAEMOPHILIA IS...
Agenetically transmitted disorder that affects coagulation of blood, resulting from a deficiency of the clotting factor. The result is spontaneous or trauma–related bleeding, typically in large joints or muscles. If untreated, life–threatening haemorrhages can result spontaneously or from trauma to the head or to the internal organs.