National Thalassemia Welfare Society (NTWS) in association with Delhi Legislative Assembly observed 32nd International Thalassemia Day at Conference Room, Delhi Vidhan Sabha. Mr Ranjit Singh Hon’ble Secretary Delhi Legislative Assembly inaugurated the event. Guests of Honour was Mr Hansraj Ahir former Hon’ble MoS Home Affairs Govt of India. Around 70 doctors and nurses from different medical institutes of Delhi NCR had a brain storming sessions for more 4 hours to improve the management of thalassemia. Approx. 50 Thalassemia warriors had a close interaction with experts to find ways to improve their quality of life.
Thalassemia is a serious inherited blood disorder requiring lifelong repeated blood transfusion for the survival. Thalassemia major patients carry high risk of getting infected with hepatitis B, hepatitis C and HIV due to transmission of these infections by repeated blood transfusions. Dr JS Arora brought into the kind notice of Hon’ble secretary that though the necessary machines were purchased by Delhi Govt last year for started testing of donor’s blood by advanced testing known as NAT (Nucleic Acid Amplification Test) in Delhi Govt hospitals. It has yet to commence. He requested hon’ble speaker to use his good office to get it initiated on priority basis. It will drastically reduce chances of transmitting Hepatitis B, C and HIV in thalassemics
Sh. Ranjit Singh hon’ble secretary in his inaugural address said that thalassemia is highly prevalent in this part of the country, effective steps have to be taken to curtail it. He assured that he will discuss it within the health committee of Delhi Legislative Assembly to ease the life of thalassemia patients and prevention of this dreaded disorder
DR JS Arora General Secretary national Thalassemia Welfare Society in his address said now we have standard guidelines on thalassemia management and prevention. We have to bring knowledge into practice. Only small steps at institute level are needed to implement these in letter and spirit. Cost of treating a thalassemia child is approx. Rs. 50,000 to 2 Lac/annum. If left untreated the life span may be restricted to 1-5 years. Dr JS Arora General secretary of National thalassemia Welfare Society said that thalassemia major who get adequate blood and optimum iron chelation can live a near normal life.
Sh. Hansraj Ahir former MoS Home affairs said that he will discuss at the highest level to make all chelators are available and accessible to each and every patient
Dr Swaran Anil in her inaugural said that with dedication of our medical fraternity now our Thalassemia warriors are enjoying better life. She appealed the civil society to donate blood regularly so that our children should not face shortage of blood. She thanked the nurses and medical fraternity for the passion they have shown in caring our children
Mrs Vinita Srivatava NHA said that E Raktakosh portal has made blood available and accessible across the country.
Mr TD Dhariyal former Deputy commissioner Govt of India and Delhi State Commissioner for Persons with Disability, enlightened that thalassemics under RPWD Act 2016 have many benefits including reservation in education and non-discrimination. He said like any other disability thalassemics can report state disability commissioner if they face any violation of their rights.
5 crore Indians are Thalassemia trait, who carry the affected gene but don’t show any symptoms. The problem arises when both husband and wife are thalassemia carriers, then in each pregnancy there is 25% chance of giving birth to a child, who will require life-long blood transfusions for survival. This condition is known as thalassemia major. 12000 to 15000 new thalassemia majors are born in our country. Birth of a Thalassemia major child can be prevented by knowing thalassemia carrier/trait status before conception or early pregnancy.
Dr JS Arora General secretary of National thalassemia Welfare Society requested Hon’ble speaker to get a bill passed in the Delhi assembly to make Thalassemia screening mandatory in pregnant women.
If husband wife both are not thalassemia trait or one of them is trait them no precaution required child will never be thalassemia major. If both, husband are thalassemia carriers then in each pregnancy there is 25% chance of giving birth to a thalassemia major child. In such case after genetic counselling antenatal diagnosis of thalassemia can be done in fetus at 10-11 weeks of gestation. If the fetus is thalassemia major the lady/family has the option to abort it, which is legal. Antenatal diagnosis facility is available free of cost for all at Lok Nayak hospital.
