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    Thalassemia and Safe Blood Transfusion in India: Patients' Advocacy Groups Promise Uniform Legislation

    Create more awareness about thalassemia and help people with safe blood transfusions.

    By Subhasish Dutta
    Wed, 07 Dec 2022 12:29 PM (IST)

    THALASSEMIA IS an inherited blood disorder that causes the body to produce less haemoglobin than usual. In India, the disorder has become very common. Many thalassemia patients are becoming infected with transfusion-transmittable infections (TTIs) on a daily basis.

    Given the nature of the problem, the TPAG, in collaboration with ASSOCHAM, organised a roundtable discussion on December 2, 2022, in New Delhi. Mr. Manish Sisodia, Deputy Chief Minister of the National Capital Territory of Delhi, formally launched TPAG on September 16, 2017. The goal of this initiative was to compile all of the facts and perspectives on safe blood transfusions in India, with a special emphasis on thalassemia patients. The discussion has brought together all of the experts from the policy-making fraternity at the federal and state levels, as well as medicine, blood banking, advocacy, corporate society, and the thalassemia patient community.

    Extensive discussions took place at the roundtable about the need for a uniform law for blood transfusion services that ensures compliance with internationally accepted safe blood practises such as voluntary blood donation, NAT blood screening, pre-filtered leucocyte-depleted blood, and extended cross-matching, to name a few. "In collaboration with TPAG (the Thalassemia Patients Advocacy Group), ASSOCHAM (the Associated Chambers of Commerce and Industry of India) will develop an advocacy paper on the key suggestions regarding safe blood transfusions," said Dr. Amita Mahajan, Senior Consultant, Deptt. of Paediatric Oncology and Hematology, IP Apollo Hospital, New Delhi.

    Dr. Anil Kumar, Additional Dy. Director General, Directorate General of Health Service, Ministry of Health & Family Welfare, Govt. of India, said, "About 10,000–15,000 babies are born with thalassemia major every year in India. 95% of the treatment cost of Thalassem is out-of-pocket for the patient. The government has introduced the eRaktosh blood banking software for data management and integration.

    Ms. Anubha Taneja Mukherjee, Member Secretary, TPAG, said, "TPAG is grateful to the National Blood Transfusion Council (NBTC) for including TPAG as a special invitee to the NBTC." This will allow us to bring on board our first-hand experience in pursuance of world-class legislation on blood.

    Mrs. Shobha Tuli, Secretary, Thalassemics India, echoed the sentiment and urged the policymakers to place "as much emphasis on the management of surviving thalassemics as on the prevention of thalassemia." Both TPAG members, Mr Anuj Wadehra and Mr Viresh Piplani, emphasise the importance of using safe blood practises such as NAT screening and pre-filtered blood.

    Dr. Androulla Elfetheriou, Executive Director of the Thalassemia International Federation, shared international best practises and discussed working with Indian policymakers. She also pointed towards the mandate of NAT by Germany in the 1990s!
    Dr. Seema Kapoor, Director Professor at the Division of Genetics, LNJP, and MAMC, shared the initiatives in store for making Delhi a safer place from the perspective of transfusions.

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