HYDERABAD: “Telangana State can be the first state in India to be completely thalassemia-free. It is possible and we can do it,” said Chandrakant Agarwal, president of the Thalassemia and Sickle Cell Society, which is an organisation that has been providing free-of-cost treatment to people with these genetic diseases for almost two decades.
The organisation was started in 1998 by parents of children with thalassemia. With much struggle and after putting in their sweat and blood in the development of the organisation, they have now reached a stage where 3,500 children get free treatment.
The biggest achievement of the organisation is to have completed about 84 Bone-Marrow Transplants (BMTs), which is the only cure for the disease, all of which were done free of cost. The organisation runs 5 centres that not only provide free diagnostic services but contribute to research around the disease as well.
“My granddaughter is now 24 years old and she is doing well. We, the parents of thalassemia children, started in 1998 when we had to look hard for blood banks to get blood for transfusions and for hospitals to get beds. Initially, Chiranjeevi and Lions blood bank supported us. Gradually we met individuals who not only donated land to run our society but also machines, beds, and other equipment. Since then, we have not looked back,” said Chandrakant Agarwal.
Besides providing free treatment and counseling, the society also runs awareness camps. “We are working aggressively on prevention for the last two years. We have started centres in Mehbubnagar and a few places in Karnataka as well. We have permanent staff in government hospitals. They take samples of all the pregnant women who come for consultation in the first trimester of their pregnancy. Through those samples, it is identified whether the woman is a carrier or not. If she is found to be a carrier, then her husband is also tested for the same,” informed Agarwal.
If someone’s Hb (Haemoglobin) is found to be less than 9 grams, they are recommended blood transfusion immediately. “We are also doing HLA typing, which means that we take the sample of the patient and their siblings. If they match, we recommend them BMT. We get these transplants done in Bengaluru,” said Agarwal. With each transplant costing around `15-40 lakhs, the organisation got all 84 of them done for free.
From providing treatment that includes regular blood transfusion every 15 to 20 days lifelong, compulsorily giving expensive chelation medicines, and even subcutaneous injections, if required, the organisation has also supported patients in providing BMTs, all without parents having to shed a single penny from their pockets. “This was all possible through the support of the Telangana government and CSR donations. Bajaj Electronics took all the responsibility of getting the transplants done,” he said. To make the state free of thalassemia, according to Agarwal, the government needs to make only one major intervention, which is, to ensure its early detection.
“My only request to the governments of Telangana and India is to make the HbA2 tests compulsory for all pregnant women who come to any government hospital or private gynecologist for check-ups during their first trimester. That would help us track the disease and prescribe treatment accordingly,” appealed Agarwal.