Just 20% in state have access to Hemophilia treatment

Though treatment for haemophilia is free of cost at government hospitals in Karnataka, just 20% of individuals suffering from the condition have access to it.

According to Vikash Goel, president, Hemophilia Federation (India), a large population is still undiagnosed, leading to complications and untimely deaths. "Even the medical fraternity is not aware of haemophilia and its diagnosis, especially in rural areas," adds Goel.

In Karnataka, the treatment for haemophilia was regularised in 2017. About 2,645 patients are treated free of charge in government hospitals at a cost of Rs 15 crore per year. Dr Swatantra Banakar, deputy director, blood safety, Health and Family Welfare Service, says the number of patients is increasing every year. "The treatment is for life where blood factors are given in the form of injections. The drugs are mainly imported, procured through tenders," he adds.

According to Dr Cecil Ross, a haematologist at St John's hospital, early diagnosis and access to treatment are giving children a near normal childhood. "Proper physiotherapy plays an important part in ensuring that they remain active and healthy. The current standard is to treat all children with regular replacement therapy — prophylactic infusions of clotting factor concentrates to prevent bleeding," he says.

There is a need to create awareness about haemophilia through education, knowledge sharing and information exchanges, says Dr Anoop P, senior consultant in haematology and pediatric hemato-oncology, Apollo Hospitals. "If haemophilia is not diagnosed early, the repeated bleeding into joints, bones and muscles may lead to synovitis, arthritis and permanent joint deformities. The bleeding itself can lead to wasting and atrophy of muscles," he points out.

What is haemophilia?

Haemophilia is a bleeding disorder where the person suffers from defective clotting protein and requires external blood factors to avoid bleeding in case of an injury. Based on the clotting factor the disease is categorised into haemophilia A and haemophilia B. Patients with severe haemophilia A constitute nearly 70% of the sufferers. It occurs in one in 5,000 males while haemophilia B is seen in one in 20,000. Though considered an inherited disease, around 30% of patients do not have any history of family members with haemophilia, making it very difficult to identify the condition.