Serum Thalassemia Prevention Federation
Thalassemia is the commonest single gene disorder in world population today. The commonest type seen is Beta Thalassemia. Beta Thalassemia occurs widely in a broad belt spreading from Mediterranean and part of North & West Africa through Middle East and Indian subcontinent to South East Asia. Each year 2,00,000-3,00,000 severely affected homozygotes or compound heterozygotes are born in the developing countries. India has the largest number of children with Thalassemia major in the world – about 1 to 1.5 lakhs and almost 42 million carriers of ß (beta) thalassemia trait. About 10,000 - 15,000 babies with thalassemia major are born every year in India.
With the present population of over one billion people it has been calculated that there are about 30 million carriers in our country. According to the government estimates about 205 lakhs of Thalassemic children are there in our country that require regular treatment of which approx. 1 lakh children are below poverty line. With current principles of therapy, i.e., regular blood transfusions to maintain Hb at 10 gm/dl and regular Iron Chelation Therapy to remove excess of iron overload, the cost of therapy varies between Rs. 80,000/- & Rs. 1,00,000/- per year per child. The cost of Chelation is between Rs. 30,000/- & Rs. 50,000/- per year per child with average life expectancy of 25 – 30 yrs. About Rs. 30 lakhs are required for treatment of a Thalassemic child. An expenditure of Rs. 700 crores will be required for proper treatment of all Thalassemics.The only cure available is Bone Marrow transplantation that will require Rs. 8 lakhs to Rs. 10 lakhs per case. The only way to reduce this psychological and financial burden on the family, society and country is to prevent the birth of Thalassemics.
Many countries in the World like Cyprus, Scily, Italy, Greece & Sardinia have eliminated this disease from their population through genetic counseling and prenatal diagnosis. Hence, it should be emphasized to undergo screening list for Thalassemia Trait in order to prevent the birth of Thalassemia children.
Thalassemia has no root cure, but it's growth rate can be retarded only by mass awareness and simple blood test. It is in the context on May 28, 2006 Sri Sanjib Acharya has initiated the federation lead by interested & socially intellectual individuals from different segments of society / social organizations to arrange pre-marital detection and counseling to safeguard against Thalassemia.
• To make people aware of Thalassemia.
• To increase life expectancy & enhance the quality of life for those impacted by Thalassemia.
• To make a positive contribution to the world of Thalassemics by arranging regular blood transfusions & aggressive management of chronic iron overload.
• To eradicate Thalassemia from the society.