Haemophilia Society Chapter in Mumbai, organised an awareness camp at KEM Hospital to discuss issues related to haemophilia including treatment, care, and management followed by a felicitation ceremony for the students suffering from haemophilia.
Dr Chandrakala, Additional Professor, Department of Haematology, KEM Hospital led the discussion and threw light on the disease burden of haemophilia in Mumbai. The event witnessed the presence of 370 haemophilia patients and their family members along with the members of the society.
The incidence of haemophilia A worldwide is 1/10,000. According to the latest study by World Federation for Haemophilia, almost half of the world’s haemophilia population lives in India and almost 70 per cent of people with haemophilia (PwH) do not have adequate access or knowledge about the treatment.
Presently, there are approximately 1200 registered patients suffering from haemophilia in Mumbai and KEM Hospital has been providing comprehensive care for many years to the patients. With government’s support since last year (January 2014), the hospital now provides free factor treatment, routine & emergency care and performs complex knee/hip replacements and brain surgeries enabling patients to lead a normal life.
Elaborating on the current situation of haemophilia in Mumbai Dr Chandrakala said that the government has been extremely supportive over the past two years by making haemophilia treatment available and providing high quality anti haemophilia factors available to the patients. This has considerably improved the well-being of haemophiliacs in the region.
People with haemophilia are more susceptible to blood transfusion acquired disease like HIV/HBV/HCV. The risk of infection through blood products can be minimized substantially with the introduction of genetically engineered clotting products like recombinant factor concentrates.
Dr Chandrakala supported the statement and added, “Prophylaxis is the standard of care in haemophilia as it prevents the joint deformity, decreases morbidity and mortality. Thus, there is a need to start prophylaxis in our patients and also protecting the haemophilia population from viruses like HIV, HBV & HCV, which are unlikely to reduce without universal use of recombinant factor concentrates for haemophilia care”.
Stressing on the need to build more haemophilia treatment centres, she further added, “Considering the rise of incidences of haemophilia, we request the government to further safeguard haemophilia population by strengthening infrastructural support and building more such treatment centres so that patients have immediate access to factors available at the nearest district hospitals, as patients cannot travel far when they are bleeding”.
The awareness camp ended on a positive note and a felicitation ceremony for the students suffering with haemophilia. The haemophiliac students from 10th and 12th grade of school as well as the graduates and postgraduates (academic year 2013-14) were honoured by the society and KEM Hospital collectively.