Thalassemia Major is an inherited blood disorder that poses a significant health burden in India. This disease is genetically passed to the children from their parents. Children affected with Thalassemia Major hardly live for 20 to 25 years and require frequent blood transfusions.
This condition is characterized by less haemoglobin and fewer red blood cells than normal, which causes severe anaemia. Due to this, the patients have to rely on frequent blood transfusions all their lives at a frequency of almost every 15 days. The affected children may not show symptoms up to 1-2 years of age, as they have foetal haemoglobin. However, as they grow up, the formation of haemoglobin in their bone marrow is insufficient. From the time of birth, considering the age and weight of a Thalassemia Major child, blood transfusions are given to normalize the haemoglobin levels, every month. As the age increases, the frequency of blood transfusions also increases, which can be anywhere between 15 days to 2-3 times in a month.
In order to help the Thalassemics and their families who have to bear the expenditure of blood transfusion all their lives, the National Blood Transfusion Council (NBTC) of India took the initiative to provide free blood transfusion to such patients in the year 2014. Bodies like the Indian Red Cross Society (IRCS) have taken this initiative seriously to ensure the availability of blood to affected individuals. However, patients living in urban areas have better quality of life due to ease of access to blood transfusion and related therapy. On the other hand, the lack of blood transfusion facilities and added transportation costs may pose a significant challenge for patients living in remote areas.
During blood transfusion, it is necessary for a parent/guardian to be present with the child. This further adds to the existing challenges, especially in the case of people who work on daily wages.
Blood transfusion is life saving for Thalassemics but it comes with certain negative impacts on the body. Frequent blood transfusion leads to the accumulation of iron in vital organs like the liver and heart. In order to control this, chelation therapy is required, which costs approximately Rs 8,000 to 9,000 per month.
Another challenge associated with frequent blood transfusions is the possibility of transmission of deadly blood borne infections such as HIV, Hepatitis B and Hepatitis C. Reports suggest that upto 45% of Thalassemia patients may get infections like HIV, HBV or HCV in lifetime due to transfusion of infected blood. Although the screening of blood is mandatory in India, every now and then we come across cases of Thalassemic patients getting Transfusion Transmitted Infections (TTIs) through infected blood. This highlights the limitation of serology-based blood screening assays which are mandatorily used across India.
“In order to win the battle against Thalassemia, public awareness is the key. A concentrated awareness not just about the disease but also about the importance of safer blood supply is very much required.”