“HFI appeals to the Government to increase awareness on hemophilia and create a separate fund for Hemophilia treatment”
Kolkata, September 19, 2014: Hemophilia Federation (India), Kolkata Chapter, organized its AGM at Kolkata to create awareness about Hemophilia and a discussion session for the Hemophiliacs and its treatment. Swami Sevaratananda, Medical Superintendent, RKMSP,VIMS, Kolkata, Renowned soccer player, Subrata Bhattacharya, Member of Parliament, Sultan Ahmed, , Ms. Cheryl D’ambrosio, President, My Girls Blood , USA were some of the key attendees along with other leading Hematologists.
The event began with the discussion around the deformity, burden of Hemophilia in India at large. With more than 200 Hemophiliac patients participating at the AGM, there was a discussion on the need for the state government to intervene further and address the situation with initiatives like opening up comprehensive Hemophilia Day Care Centre in every Medical College of West Bengal.
In West Bengal alone, there are around 1200 registered Hemophiliacs suffering from Hemophilia which involves a high cost to manage the needs in order to be preventing crippling deformity. The major challenge for these chapters is to treat the poor as most of the patients are from poorest of poor backgrounds. Hemophiliac patients lack access to medical facilities. It is the need of the hour to make safe factor concentrates as the safest available treatment option to the patients. This patient awareness
activity is a step forward to appeal to the government to facilitate more funding for factors.
On the occasion, Dr. Kanjaksha Ghosh, President HFI & Director, National Institute Of Immunohematology, ICMR, KEM Hospital, Mumbai said, “While we thank the govt. for providing free factors, we request them to provide separate fund for hemophilia therapy. The next step is to ensure that the treatment is immediate & adequate. In West Bengal, the major issue like many other Indian
states is the lack of awareness and infrastructure. Lack of required factor concentrates & reliable laboratory facilities are a major concern. This needs to be addressed. We are hopeful and appeal to the state government that keeping in mind the need of Hemophilia patients in the state, government will soon take some action to address the gaps. It is the need of the hour to provide highly purified factor VIII and IX concentrates as the safest and pure treatment option”.
Statistics state that more than 75% of Hemophilia population in India cannot even afford the basic treatment. There are many PWH who are yet to be diagnosed; many cannot even reach to a nearby hospital for a minimum basic treatment. Also, there are many who still get treatments with whole blood transfusion and not aware of the existence of high quality and safe factor concentrates. Many unfortunate PWHs get infected with the blood born viruses like HIV, HCV & HBV. Most people with Hemophilia in India have little or no access to proper care and treatment.
Present at the event, Ajoy Roy, Regional Council Chairman (East), Hemophilia Foundation (India) s aid, “The current data in the region is alarming and it shows that there is an urgent need for availability of safe factor concentrates in every hospital of West Bengal including sub divisional hospitals as treatment to address the well-being of the patients in Kolkata and West Bengal. I am confident keeping in mind the need of Hemophilia patients in the state, government will soon take some action to address the gap.”