Kolkata :Hemophilia is a genetic and life-threatening bleeding disorder. Even with a minor injury or cut, in Hemophilia, a patients’ blood does not clot normally due to the absence of clotting proteins called Factors. In the absence of adequate care, recurrent and prolonged bleeding into joints and muscles can lead to permanent disability and bleeding. Bleeding in the sensitive organs can lead even to death. The only possible treatment is infusion of life saving drugs called Anti-Hemophilic Factors (AHF), which are costly and neither produced nor readily available in India. (1 unit of Factor costs around Rs. 10-12 and in any bleeding episode, a person needs 500 to 2,000 IUs in one shot which amounts to an expenditure of Rs. 5,000 to Rs. 20,000 on an average per factor infusion).
Abhijit Ganguly spoke to Vikash Goyal, Vice President (Development), Hemophilia Federation (India)
Q)What is the incidence of hemophilia in India?
A) Not only in India, Globally the incidence of Hemophilia is 1 in 10000 males.
Q)What are the early symptoms of hemophilia ?
A)Bruises and blueness in all parts of the body where a little pressure is applied or minor injuries happens and prolonged bleeding in minor cuts.
Q)How difficult is it for children with hemophilia and their families dealing with hemophilia?
A) Financially it is a very expensive and lifelong problem with no cure.Socially, since it is a genetic disorder from mother’s side it has resulted in a lot of divorces.Emotionally it drains the family due to continuous fear of bleeding.
Q)Most people suffering from the disease are from the lower socio-economic groups and avoid the treatment as it incurs high expenditure. What is the way out?
A) Long term treatment is possible only if government help on prophylaxis basis.It will help the hemophillics from not becoming disabled.
Q)It is said that only 15% of Hemophilia patients are registered in India. Your take on this.
A) It is true, but as awareness is increasing ,the percentage is becoming better.
Q)How does the Hemophilia Federation help persons with hemophilia cope with the disorder?
A) Hemophilia Federation India helps in advocacy at the Medical and Government level.Helps in identifying undiagnosed PWH.Helps in giving some financial support for educating the PWH. Providing factors which we manage to get from CSR support of companies and the World Federation of Hemophilia. We also counsel the PWH and their families.
Expert take :
“The concept of comprehensive care in Hemophilia is nothing new. Decades back it has been proven that multi speciality comprehensive care can even prevent deaths and improve school attendance. As West Bengal has State Thalassemia Control Programme in place, a bit of tweaking can lead to establishment of a well coordinated hemophilia care programme including prenatal diagnosis and prevention.”
–Dr Prantar Chakrabarti
Professor and Head,
Department of Haematology,
NRS Medical College, Kolkata
Recently,Hemophilia Federation of India (HFI) organized the 4th Musculoskeletal Workshop with sponsorship aided by Novo Nordisk Haemophilia Foundation (NNHF) in Kolkata.The aim of the project was to improve the physiotherapy and MSK resource for persons living with hemophilia (PWH) in India. It was conducted Dr. Pamela Narayan, a Global Expert on Physiotherapy with respect to Hemophilia. . In our country, factors are very expensive and inadequate for the current demand. As a result Physiotherapy is the only inexpensive way to treat and PREVENT joint/muscle bleeds in Hemophilia.