To mark the occasion of World Haemophilia Day (April 17, 2013), Haemophilia Society, Ranchi Chapter organized an awareness camp and discussion session for the patients on Haemophilia and its management.
The awareness activity aimed to raise awareness about the Haemophilia disease, its diagnosis and available treatments providing them total care through continuous education, training and rehabilitation.
In the camp the speakers also made an appeal to the government to take notice of the haemophilia patients who are in dire need and require support.
It was discussed in the camp that in Jharkhand there are around 5,000 patients registered who are suffering with haemophilia disease and 350 registered patients in Ranchi alone suffering from this disease burden.
The discussion apprehended that the major challenge is treating poor as most of the patients are from poorest of poor background.
“Not only we want to raise the awareness about the Haemophilia disease among physicians and the public but would like the government to support us with better infrastructure for better treatment of patients when life threatening disorders like Haemophilia is concerned.
Till date, patients have been not receiving safe clotting factors by government and our concern is that they will continue to support patients so that high purity factors of treatment can be made available to the haemophiliac patients.
The next step would be a creating more awareness about the disease and providing comprehensive psycho-social care mechanism for the PWH in the state," said Santosh Jaiswal, Secretary Haemophilia Society, Ranchi Chapter.
Members of the group and society, Haemophilia patients, their families and friends attended the awareness camp.
Dr. Amar Verma, Assistant Director of Genetics, Rajendra Institute of Medical Science, Ranchi said “Haemophilia is the oldest known uncommon genetic bleeding disorder that disrupts the blood clotting process. In India, It is estimated that with population more than 1000 million, at least 60,000 persons suffer from severe haemophilia. To ensure quality life to patients suffering from Haemophilia Safe and Efficacious Clotting Factor concentrates should be made available for patients to manage the bleeding episodes.”
He further added that Use of blood bank plasma based therapies is a risk for developing transfusion transmitted infections like Hepatitis B, Hepatitis C and HIV.
Biological products such as Clotting Factor concentrates have specific requirements for definitions of quality which must be recognized when procuring such products to ensure safety and efficacy of these treatments Current manufacturing processes of Clotting Factor Concentrates have ensured practically no or very low risk of viral transmission of transfusion transmitted diseases.