D.N.I.S. News Network - The lack of awareness, prohibitive cost of medical treatment and meagre government funding have made life difficult for an estimated 50,000 people affected by Hemophilia in India. The permanent blood disorder and unavailability of adequate support facilities have a disabling effect for people affected by it.
These issues came to the fore on the World Hemophilia Day observed on 19 April 2006 in different parts of the country, including the National Capital where a public march was staged to attract attention toward the issues and needs of Hemophiliacs.
Executive Director of the Hemophilia Federation-India (H.F.I.) Ranjit Mookerji blamed the Government of not showing any apparent urgency to address hemophilia. Activists, doctors and parents claim that the little known blood disorder is recognised as being as dangerous as A.I.D.S. and Thalassemia.
Stating the reason for this apparent apathy, Mookerji said: “Because Hemophiliacs are lesser in number in comparison to people suffering from other deadly diseases, the Government has refrained from taking interest in the matter.”
“No budgetary allocations are made for hemophilia. We petitioned the Central Government through the National Human Rights Commission (N.H.R.C.) but it fell on deaf ears,” Mookerji was quoted as saying.
"Hemophilia patients deserve fair treatment from the Government in keeping with the right to life incorporated in Article 21 of the Constitution," said Vinod Khanna, President of the Hemophilia Society of Delhi, who is also a hemophiliac, was quoted as saying by a newspaper.
Most government hospitals do not have stock of the essential blood clotting factor concentrates that has to be administered to the patients immediately so that their lives can be saved. Factor concentrates cost about eight to twelve rupees per unit. In each episode, a Hemophiliac has to be administered at least 250 to 1,000 units twice a day. This is simply out of reach for many people living in poverty or even with modest means.
Apart from administration of factor concentrates, the focus needs to be shifted to early intervention through diagnosis and pre-natal screening, prevention of bleeding episodes, and in the event of bleeding, proper treatment, including surgery and physiotherapy.