To deal with thalassemia, the focus of the government and society should be on prevention rather than cure as treatment for this blood disorder is very expensive and cumbersome, doctors say.
Thalassemia is an inherited blood disorder transmitted from both parents to children, resulting in reduced hemoglobin, due to which the body’s red blood cells, which carry oxygen to all the cells of the body, are not able to function properly. This leads to anemia, which makes the patient feel tired or short of breath. Severe anemia can damage organs of the body. Additionally, repeated blood transfusions lead to iron overload which can cause organ damage if not managed adequately. India has the largest number of children with thalassemia major in the world at 1-1.5 lakh. About 10,000-15,000 children with this blood disorder are born every year in the country.
Dr (Prof.) Pravas Mishra, head of Haematology & BMT, Amrita Hospital, Faridabad, said avoiding the birth of a thalassemic child is the only feasible solution to the challenge. “When a woman is pregnant, she should be screened for this disease. If she is found to be a carrier, the husband should also be tested. If both are found positive, then a test is required on the unborn fetus. If the fetus is found to be affected, then the parents can consider the option of abortion and avoid the birth of a thalassaemic child. Since thalassemia is a genetically transmitted disease, the child would either be thalassaemic or a carrier. A carrier child doesn’t suffer from the disease.”
Mishra said: “It is important to reduce the burden of thalassemia. The only permanent cure for thalassemia is a stem-cell transplant, which is very expensive, costing Rs 12-15 lakh. This is possible if a matching donor is found within the patient’s family, which happens only in 25-30% of the cases. The rest of the patients have to wait to find an unrelated donor. The ideal time for undergoing a stem cell transplant is before the patient enters their teenage. In later years, there is a risk of suboptimal responses due to iron overload in the body.”
Thalassemia patients need repeated blood transfusions, sometimes quite frequently in a month. Getting good quality blood, and as often as required, is a big challenge for them, according to the doctor. “Several thalassemia societies today exist which try to help patients by connecting them with local blood banks and government medical colleges where they can get free blood transfusions, but this remains inaccessible for most patients. Thalassemia and sickle cell anemia are now part of the national program, so there is a lot of awareness among the Government to tackle this disease,” he said.
Because of a lack of awareness in society about how thalassemia is genetically transmitted to the next generation, mothers commonly continue to get the blame if their children suffer from this disease, according to Dr Pravas.
“Women in India get a lot of blame for anything related to children, be it the inability to give birth to a son, or the children suffering from any health problem or mental disorder. The same is true for thalassemia. Many women also keep blaming themselves for not giving birth to a healthy child. People do not realize that for a child to be born with thalassemia, both the parents need to be thalassemia patients themselves, or the carriers of thalassemia genes. The child has to inherit faulty genes from not one but both parents to get the disease. So, blaming the mother for thalassemia in children is a result of ignorance and social prejudices, especially in smaller cities and towns,” he added.
