World Thalassemia Day is observed every year to remember the direct and indirect effects of thalassemia disease. Now in India also various programs of Thalassemia Day; Also activities are happening and these activities are happening at government and private level as well. However, the fact remains that due efforts are not being made to ensure that no baby is born with thalassemia. That is why 12 thousand thalassemia children are still born every year in India. While drawing attention to this, Dr. Fital Medicine expert. Prashant Acegaonkar said, ‘In India, there are more than five crore thalassemia disease carriers, i.e. ‘thalassemia minor’ people. If both the husband and wife are ‘Thalassemia Minor’ then the child born to them may be ‘Thalassemia Major’. Importantly, every thalassemia major requires transfusion every 15 to 30 days throughout life. Along with blood donation, different types of medicines have to be given; Other types of care also have to be taken. Although it is mandatory to provide blood to such patients free of cost, the actual blood transfusion procedure, other medications and ancillary costs are also incurred. In fact, the responsibility of such patients is very big and the patient and his family often have to work hard. Therefore, it is necessary to take full care of such patients; But it is necessary to make a concerted effort to ensure that children with thalassemia are not born. As part of these efforts, if every pregnant woman is tested by HPLC, it will be clear whether the pregnant woman has Thalassemia Minor or not, and the birth of a child with Thalassemia Major can be prevented as per the wishes of the parents,” added Dr. Acegaonkar said.
There is also a great need for genetic testing
If both the husband and wife have ‘Thalassemia Minor’ then genetic testing can clarify whether the child born to the pregnant wife is ‘Thalassemia Major’ or not. If genetic testing reveals such a possibility, parents can also decide on medical abortion. Experts also pointed out that such genetic tests should also be available in the government system.
Local administration can take decision
‘Thalassemia minor’ can be diagnosed by HPLC test and hence such tests should be done at national level in all government hospitals. It really requires a strategic decision. However, although the decision is yet to be taken at the national level, the decision of the local administration can also be taken at the district level. Every pregnant woman in Parbhani district was tested and because of this some thalassemia children were saved from being born. In fact, until a strategic decision is taken at the national level, such a decision can be taken at the local level in other districts, said Dr. Dr. Prarthana Shah said while talking to ‘Mata’.
While thalassemia is widely recognized, there is a need for policy decisions to prevent children from being born with such a serious disease. However, since there is no concrete effort in that regard, every year 12 thousand thalassemia patients are born in India.- Dr. Prashant Acegaonkar, Fital Medicine Specialist
HPLC testing has been facilitated through the Thalassemia Society. However, such a facility should be made available in all government hospitals at least now, so that our suffering is not shared by others, this is the role of the society.- Anil Divekar, Secretary, Thalassemia Society