Ankita Chakrabarty/ Zee Research Group/ Delhi / @AnkitaChakraba
When most of the children in the age –group six –ten years are busy playing and enjoying their childhood to the fullest; Amit Shankar (name changed) is lying on a hospital bed being administered blood transfusion for thalassemia. This is a common routine for the six year old for he has to visit a blood transfusion clinic every three –eight weeks to maintain his haemoglobin level.
Shankar lives to tell the tale of agony and despair of one lakh thalassemic patients in India. The disease is rearing its ugly head in the country as about 10,000 thalassemic children are born every year.
Giving out the latest data on the disease, Minister of State for Health & Family Welfare Abu Hasem Khan Choudhury told Lok Sabha on March 8 that government had no specific strategy for genetic counseling and treatment for genetic diseases. But the harsh truth is that young Shankar and many like him might well have escaped the disease, if only his parents had undergone a simple test before marriage.
Reiterating the view, Dr. Gitanjali Sharma, marriage and relationship counselor from Delhi, says, “When a couple comes for pre –marital counseling, I advise them to go for blood tests for the detection of genetic blood disorders like thalassemia if any. There have been several such instances when the couple has decided not to proceed with the alliance if any one of the partner was found to be affected with any of the genetic blood disorders.”
Thalassemias are inherited blood disorders. "Inherited" means that the disorder is passed from parents to children through genes. Thalassemias cause the body to make fewer healthy red blood cells and less hemoglobin than normal. Each person can be either of the following three: Normal, Thalassemia Minor and Thalassemia Major. Thalassemia Major is a serious blood disorder. A person with the thalassemia major has insufficient haemoglobin, the critical oxygen carrying component of blood.
Detailing the crucial facts about the disorder, Dr. V.P Choudhury, former head of hematology at All India Institute of Medical Sciences (AIIMS), warns, “ In India about five crore people are carriers of thalassemic gene. If a person with a thalassemia trait marries another such person, the offspring has a 25 percent chance of developing full blown thalassemia.”
Thalassemia is 99 percent incurable; however, it is 100 percent preventable. Endorsing the view, Dr. Choudhury formerly with AIIMS says, “Screening is what the need of the hour is. Every lady who is pregnant should be given a thalassemic test but unfortunately most of the pregnant women in India go for Antenatal check –ups after 15-20 weeks of their pregnancy which is too late for saving a thalassemic child.”
The health ministry body-ICMR- has helped to set up prenatal diagnostic facilities for haemoglobinopathies in five centres in the country in the states of Maharashtra, Gujarat, West Bengal, Karnataka and Punjab.
Concurring with the view that government needs to do more, Dr. Lona Mohapatra, head of department of laboratory at Rockland Hospital, Delhi, says, “Thalassemic patients need to go for blood transfusion every month, and the rates of blood transfusion vary from hospital to hospital, it is at this point where the government should interfere and should sanitise the rates.”
Emphasising on developing better and improved infrastructure facilities at pan India level, Dr. Choudhury asserts, “ Awareness is an issue but what is most intriguing is that if good facilities are not available at every hospital for screening purposes , then the general public will also not feel provoked to go and get their tests done for thalassemia.”